## 556: What’s the difference between “can’t” and “I’m scared, don’t wanna?”

Dear Captain Awkward,

I’m a 25-year-old living at home with my parents; I received a BA in English/Creative Writing about two years ago, and I haven’t done much of anything since then. I’ve been struggling with depression and anxiety (especially social anxiety) for practically my whole life, and a couple months ago I was also diagnosed with Asperger’s. On top of that, I have some physical health problems: tons of food allergies that cause a lot of digestion issues and Fibromyalgia. These all make my daily life pretty difficult. I’ve been seeing a therapist for about a year, but I feel like I haven’t made any progress.

I have very little energy to do anything; I sleep late every day no matter what time I set my alarm clock for, and every day I take naps for two hours or more even if I set an alarm to try and force myself to get up sooner. Most days I stay at home, but on days when I have to leave the house, I come back home later completely exhausted for the rest of the day – sometimes for more than one day. So it’s really difficult for me to find the energy to force myself to do things, not to mention the motivation.

I haven’t written anything since I graduated, and I can’t get myself to draw anything either (I took plenty of drawing classes as well and for a while I thought about starting a webcomic, but I just don’t have the energy or the motivation to keep up with something like that). I also don’t have any social life, because I never made any real friends while I was in college, and I’ve lost contact with all of the friends I had in high school, so I’m pretty socially isolated.

I’ve been working on getting a driver’s license, but it’s slow going. For the past month and a half, I’ve tried doing yoga for about ten minutes a day, but I don’t think it’s made any difference in my health. My primary care doctor doesn’t have any other suggestions.

With all of this, I don’t know if I could handle holding down a job. I can’t imagine ever having the energy to work for five hours or more at a time. My parents want me to try and apply for disability to help pay for my college loans, because they’re paying for them right now and it’s hard on them. But my parents have always been very overprotective, and I worry that they’re not pushing me as hard as they could be to do better. I want to someday be able to live independently, but I’m not sure what kind of job I could work or how I could make that possible.

I guess this is my question: How do you know the difference between being completely unable to do something (like get a job) and being scared or finding it difficult?



Dear Exhausted:

I’m so sorry you are dealing with so much exhaustion and physical pain right now. That’s going to affect everything else in your life, so be really nice to yourself as you figure out what “normal” feels like, and don’t underestimate how constant pain and fatigue is getting in the way of your mojo. It matters a lot in terms of what’s happening right now.

You say of your parents “I worry that they’re not pushing me as hard as they could be to do better.” Your parents can support you, financially, logistically, emotionally, and it sounds like they are. That’s nothing to sneeze at, and it’s good to be grateful and do whatever you can to treat them well and develop an adult relationship with them. But the time for your parents pushing you, or otherwise shaping the person you’ll become, is over. Biology has dealt you some shit circumstances, and the global forces of Economics are certainly not helping, but you’re 25. You push you, or no one pushes you.

Do I Even Want To Be Pushed? Toward What? and How? and At What Pace? are questions worth chewing on over the long term.

In the short-term, you can take some baby steps. You can try some things out.

1. Apply for benefits. From what I know, applying and getting approval can be a somewhat long and arduous process in itself, but do the paperwork and get the ball rolling. If something magically improves between now and the time the benefits kick in, great: You’ve got good problems. If not, that money is for you. Use it without shame. I suggest dividing it into three piles: 1) Goes to your parents for your student loans & general upkeep, 2) Smaller amount = Weekly pocket money for you 3) Savings account for you for the future. Do not underestimate the benefit that having a little money of your own can have on your feelings of independence.

2. Ask your doctor for a counseling referral. Even if you didn’t have a history with depression and anxiety, managing chronic pain & exhaustion and the process of rebuilding a life for yourself in your hometown (not to mention the big scary questions of The Future) will be easier with a better sounding board. Edited to add: Sorry, I meant to say ask for a NEW counseling referral. It is okay to break up with your therapist! Script: “I think I would benefit from trying this with someone else. Can you give me a referral?”

3. Seek out other support resources. One that comes to mind: ChronicBabe, a site for young women with chronic illnesses. Two recent posts are: How To Cope With Isolation?  and How Do I Increase My Sense of Self-Empowerment? which both sound up your alley. There is a 2000+ member forum of posters. I’m not a regular reader or member, I can’t speak to the community’s culture or promise you’ll like it there, but I know the site owner Jenni a little bit from real life, and she is a friendly, encouraging soul. It’s a starting point.

4. Keep doing yoga. Maybe it won’t ever show dramatic results for your health. But if you are able to handle it physically, I have to think that moving your body for 10 minutes a day every is a good thing. It’s valuable as ritual. It’s valuable as process. It’s valuable as structure. It’s something you can control when everything seems out of control. Try to enjoy those 10 minutes for their own sake.

5. Find out if any childhood friends are still local. It’s completely normal to lose track of high school friends when you go off to college or move away from your hometown. It is not weird to call old friends or find them on social media sites and say, “I’m back in town, are you around? Want to have lunch?

Keep initial visits short and light and see if the spark of friendship is still there. Do you still have stuff to talk about? Is it fun to spend time with them? And assume nothing about who the person is or what they want now. “She probably won’t want to ________, so I won’t even bother asking” is you filling in your worst fears for another, totally separate person’s free will. You can’t control whether you’ll still like these people, or they’ll like you, or whether they are even around, or whether you will be friends. You can control: seeking them out, issuing an invitation, and seeing what happens.

If you can’t visit in person, a phone call or Skype session catching up with someone can still be pretty great.

6. Study something. There are a jillion free online courses in the world. Lynda.com requires a subscription fee, but has excellent nitty-gritty skill based tutorials in software that could benefit a creative person with some drawing and writing skills like yourself. Look, here’s a free class exploring social issues through comic books that’s happening right now.  Here’s a brief compendium of free online writing classes.  If you have a laptop you can literally do whatever it is from your bed, at your own pace. Aim for one hour every weekday to start, and schedule that hour at the same time every day. If 30 minutes, or 15 minutes is more manageable, do that instead. A small daily habit and ritual of working is better than a marathon. If you need to stop and sleep, sleep. If you need to take a day off to rest, rest. If you hate it, quit and find a different class.

Three reasons to take a class of some kind right now:

  • Structure. You haven’t been writing or drawing in a while, you say. Well a class will have assignments, and feedback, and a community of other people doing those assignments. It will give you a framework for getting started again, without the pressure of having to come up with a project from scratch. It will give you a framework for picking up some marketable skills and a recent portfolio of work for when you are ready to seek out employment. You need to get back into the habit of making & doing something. This is a low-stakes way to start.
  • Pleasure. Think about something new. Explore an interest. Pleasure matters.
  • Answers. Two questions that really suck when you are ill/unemployed/otherwise at a loss are “So, what do you do?” and “What did you do today, sweetheart?” They are routine, well-meaning, nearly unavoidable, and yet every single time they can shock you with how quickly the abyss of crushing fear and insecurity opens up under your feet when you hear them.“I moved home for a while to deal with an illness, I’m taking classes in ______.” “I worked on my class project today.” Take that, Abyss.

I could suggest more stuff, but honestly, that’s probably enough to chew on for right now. In six months, when you’ve got a little bit of a routine going, here’s what leveling up might look like over the course of a year or so:

  • Joining a regular MeetUp or hobby group to meet new people. Get out of your house to do something fun with new people once/month.
  • Taking out all the writing & artwork you’ve ever done and sort through it. What themes are there? Can you see moments that you really developed and grew as an artist? Could something be polished and submitted somewhere? If nothing else, remind yourself that you are a maker of things, that you’ve made things. The person who made those things is still right here, with you.
  • Start looking at job listings for freelance writing, copyediting, illustration gigs. See what kind of skills & portfolio pieces are required. Target your online study so that you are creating those kinds of pieces. When you feel ready, apply for some work. Do the work.

Don’t worry about all that right now. Apply for benefits. Find a new counselor. Keep doing yoga. Seek out an old friend. Take a class. Work on some aspect of those things a little bit every day. Make a start.

187 thoughts on “## 556: What’s the difference between “can’t” and “I’m scared, don’t wanna?”

    1. Since she doesn’t mention that, I assumed she was in a country with universal healthcare.

      1. Well, universal isn’t always precisely universal. For example, in Canada, most doctor and hospital visits are covered. But prescriptions, optometrists, and dentists have to be covered by additional insurance. Long term therapy and physical therapy also require additional insurance. It’s definitely something to look at. I know I’m covered by my parent’s plan until I leave school or turn 25, whichever happens first. After that, I have to either find another source of insurance or start paying for my prescriptions out of pocket.

  1. Longtime reader, first time commenter…

    LW, I completely feel for you. When I was 23 I had a year in which I pretty much couldn’t do anything, I was struggling with PTSD and also physical illness and just generally not OK enough to hold down a job or study. For what it’s worth, it took a few years but eventually things turned around and I went to graduate school and now at age 41 I have a job that I love in which I am very successful. I completely agree with all the advice here, and all the steps recommended. One thing that worked for me in particular was trying to make sure that every day I did something that I found enjoyable. Maybe read a book, or go outside for a few minutes, or maybe watch a movie, or see a friend, or go to a lecture about something interesting. It was hard to do, because I kept feeling like my scarce energy and resources should go to something Practical and Productive, but deciding on purpose to use some of it for something fun every single day made it much easier to get through, and also to remind myself that there are things in the world that give me pleasure.

    Good luck with it, LW.

    1. I love this advice. It’s easy to see anything fun through the guilty, shame-y lens of “SHOULD.” No. Do something you like every day.

      1. ::nods:: My anxiety is really really good at convincing me that self-care is weak-willed indulgence that I don’t deserve. It has taken quite a bit of work to realize that. I still don’t always succeed but I’m getting better and identifying this particular jerkbrain trick.

    2. I kinda feel like this is even more important for people with a disability than it is for people without one (for whom it is still important, of course), because daily life and feeling bad about the things you can’t do can be *such* an energy suck. I have a congenital myopathy and I know from experience that prioritising myself over things I have to do can be really hard, because I feel lazy and self-indulgent when I spend the afternoon knitting rather than sending out resumes or doing the dishes or whatever. But the thing is, when I have little energy to begin with (physically, sometimes mentally which is sometimes caused by the physical tiredness!), an afternoon knitting gives me peace of mind and mental energy (plus socks, hats, gloves, scarves etc). It’s just being nice to myself and actually making good use of the energy I have.

      I personally think that one of the hardest parts about having a disability is feeling like you have to account for why you can’t do stuff or why you haven’t done stuff while at the same time you *were* able to do that other stuff (for example, why can I spend an afternoon sewing but can’t I work fulltime). I used to feel bad about not being able to pull my weight, as it were, as if I was letting society in general down. Especially, I think, for people who showed promise by being smart or creative or whatever, since you also feel like you’re letting yourself down – “I used to be able to do that, why can’t I anymore??” A cousin of mine who was born with paraplegia, put it well when I complained to her that I had been able to go to highschool full time and why was I not able to work full time now. She said that back then, we had been asked to function on teenage energy level, meaning school, social stuff and maybe sports or whatever, but with some leeway if you were physically not up to it and (hopefully) with the support of our parents. Now we were supposed to be on adult level, meaning having a load of responsibilities and expectations which we just can’t fulfil. We have to support ourselves now and that’s bloody tiring! And sadly in the steady stream of Things That Have To Be Done (why can’t the dishes stay washed for once???), other activities fall by the wayside as they seem less important.

      LW , please know that being creative *is* important and allow yourself to do something nice for yourself. Put it into your routine, even. I put reading every day for half an hour into my daily routine, and am seriously thinking putting knitting into my routine as well since it calms me down and is just a half hour of sheer me time without any expectations except finishing that book or that sock.
      The flip side of that is to please ask for help. The truth is simply that you need it (and trust me, I put off asking for financial benefits for YEARS because “I did perfectly well without it”. And then when I finally applied and got them, what do you know, a weight fell off my shoulders). Please don’t feel too proud or like you’re letting down the side or whatever. Asking for help is another way to be nice to yourself – plus it takes some weight off you so you can have more energy to spend on things you enjoy. 🙂

      (Wow this got long.)

      1. Yes to all this. I’ve got CFS and while I can still work (albeit part-time) and do chores around the house, it is really hard to accept the limitations, especially compared to what I used to be able to do. I know the utter exhaustion and inability to focus and how depressing that can be. If you haven’t already heard of it, look up the spoons concept. I’ve got this many spoons of energy for the day and I HAVE to keep a couple spare in reserve. Okay, now what can I do with the remaining spoons? Get up, shower, dress, breakfast, etc. Social interaction can be draining (even good ones), don’t underestimate the energy needed. Really important – be kind to yourself and no beating yourself up about things you have no control over.

  2. I think the LW says zie has been seeing a therapist for a year but it’s not helping… but the LW is showing classic signs of major depression, so maybe it’s time for a different therapist? A different therapy approach? The letter doesn’t give details about meds, which is fine, but if meds are in the picture, they should be tweaked and if meds are not in the picture maybe some can be introduced to see if they can help with the exhaustion and sleeping so the LW can feel like there is even an option to start small (which I agree with)?

    1. You’re so right, I meant to say, ask for a NEW counseling referral. Post updated.

    2. re meds, given LW has Asperger’s then that can be complicated. For some reason meds can react differently with spectrum-dwellers and have to be minutely tweaked.

      1. Please listen to emmeline about meds, but also consider them if they are possible.

        I have chronic depression. Your symptoms sound so familiar! The dragging exhaustion was one of my depression symptoms, as was lack of motivation and enjoyment in life. Meds helped me enormously. The exhaustion lifted and I found that life was so much less hard.

      2. Yes to this.
        Meds may or may not work, but even if they do they can take a lot of work and time to get right, It’s a process.

  3. I am dealing with almost the exact same problems as Exhausted. I don’t live at home, but my parents are supporting me, and I have fibromyalgia, digestive issues, depression, and intense anxiety issues. It’s also often difficult for me to figure out the line between “I actually can’t” and “I just need to suck it up and face fear/discomfort and do what’s necessary.”

    I would second the advice to be kind to yourself – maybe sometimes you’re just giving into the fear and need to push yourself harder, but so what? Even people who are relatively physically and mentally healthy have trouble with adjusting to adulthood responsibilities, and you’re dealing with so much shit that most people don’t have to deal with, so if you’re fumbling to figure out what you’re actually capable of, that’s completely understandable. Just keep gently pushing yourself to do things, without scolding yourself when you fail.

    And oh, ugh, that stupid “what do you do?” question. I don’t understand why it’s considered polite small talk. There are so many reasons (especially in today’s economy) a person might have for finding that question incredibly uncomfortable. I want to burn the phrase from the English language. I’ve finally begun to teach myself not to feel ashamed or defensive or compelled to explain myself – I just tell people I’m dealing with health issues and can’t work outside the home right now.

    Two bits of advice that may or may not be helpful, depending on your body and other factors:

    – I’m currently on a med cocktail of 100mg Savella twice a day, 20mg Lexapro once a day, and about 1200mg Gabapentin spread throughout the day, and these have helped me enormously. (The gabapentin has been especially helpful with my anxiety, even though it wasn’t prescribed for that, it was prescribed for pain.) I still can’t work outside the house, but they’ve made a huge difference in my outlook. If you haven’t been prescribed anything, I’d suggest asking your doctor about those, or others. (Although be aware that Savella has a high side effect profile (I didn’t have problems, but a lot of people do), and if you try that one, make sure you’re given one of those starter packs that ups your dosage really slowly.)

    – Yoga is great, and it’s a part of my exercise routine, but weight lifting helps me ENORMOUSLY with pain and weakness issues. I know you’re thinking, “Weight lifting?! How could I possibly do that in this state?!” but the key is to start with really light “girl” weights, low reps, and short duration. I’d advise starting with 3 – 5lbs, exercise for 5mins, rest for 2, exercise for 5 more mins, and then stop. That’s how I started and now 3yrs later I can workout for an hour – an hour 1/2, taking short breaks after each set, and I can deadlift 80lbs for 5reps, and I’m still getting stronger. Not only has this affected my physical health, it was remarkably psychologically empowering to find myself lifting more weight than I thought would ever be possible in my life (especially since I also have spina bifida).

    If you’re interested in starting a routine, I learned the basics from about.com (http://exercise.about.com/cs/exerciseworkouts/a/weight101.htm ) and just searched on youtube whenever I felt I needed to see a particular exercise in more detail. Also note that with fibro, if you take longer than a 1 week break from exercise you’ll need to ease back in – I crap out every winter due to SAD, and it takes me a month or more to get back up to where I left off.

    Wow, that was kinda TL;DR! I hope it’s a little helpful though.

    1. I really wish people wouldn’t call the 3-5lb weights “girl weights”. They are light weights; you pick the correct weight for the exercise you’re doing and your current strength.

      It’s as bad as calling pushups from the knee “girl pushups”.

      1. I never heard of them as girl weights; I’ve always called them “cookie weights” which I like a lot better. Because cookies = yum.

        Also, weightlifting has lots of different purposes! When I was running, we deliberately lifted really low weights, because we wanted to build endurance, not strength. Don’t feel like you have to “go big or go home” – get the right weights for the job and be proud of getting out there and doing it, even if it’s only for 1-5 minutes.

    2. Seconding all of this! I’m also dealing with an assortment of anxiety, pain, and motivation related issues, and it’s tough to differentiate between “couldn’t succeed if I tried, so I didn’t try” and “could have succeeded, but didn’t because I didn’t try.”

      For me, therapy is the #1 most helpful thing. LW, if your therapist isn’t helping you, you can definitely find another one that will be better. Sometimes you need to try out a few therapists before you find one that you really click with, so it’s ok to explore a bit. I found my therapist through the local Jewish family centre (I’m not Jewish) because they’re a low cost option, and I know that there are Catholic organizations that do similar work without proselytizing. If cost is a concern, try one of those routes.

      #2 is having a bottle of 1mg Ativan at my disposal 24/7, so that I always have the option of taking it when I’m feeling excessive anxiety. I don’t take it on a regular schedule, or even every day, but I do take it often and even when I don’t take it I feel much better just having the option available to me. I’m not on medication for depression or ADHD right now, but I know I’m healthier with those medications. So if you’re also currently off a medication that used to help, it might be time to look into trying again, or trying something new.

      #3 is regular exercise. I’m not an outdoorsy person, so an inexpensive gym membership at the YMCA is my preferred option. I started weight training about 2 months ago and contrary to what I’d assumed before, it actually helps with my auto-immune related joint pain instead of making it worse. Building bone density and growing muscles is a good thing for everyone of course, but especially for people with health problems like mine. (Of course I don’t know if that’s necessarily applicable for you, LW, but it might be worth a try.) Working out makes me feel stronger and more energetic, and I sleep better at night. Also, and I know this sounds ridiculous and petty, I enjoy the smugness I feel after going to the gym. I don’t brag about it or anything, but I feel really accomplished and proud of myself. I also do yoga (yay yoga!) and making Sun Salutations a part of my morning routine has really improved my motivation in the mornings.

    3. Short detour on the “what do you do?” question: I hate it too (I was unemployed for some time last summer, it was super awkward), but “hi, please contextualize yourself” doesn’t make for good small talk with most people.

      I try to say things like “what do you do when you’re not doing this?” (ie, this swing dance event, this language group meet-up, etc.) so people can talk about what else they do in their lives, but what phrasings do you folks use and like? Aim is not “what do you do that makes money,” but more like “hi, I just met you, what conversational doors shall we open?” Especially in a way that allows people in the LW’s current situation, or similar, to give an answer that feels good.

      1. You know, “what do you do” doesn’t *have* to refer to “what do you do for a living.” “Well, right now I’m reading this nice book.” “I’ve gotten really involved in binge-watching Game of Thrones.” “My goal is to run a 5K.” Whatever.

        1. Yes, this! I think most people ask this question because they simply want to start a conversation and it’s a socially acceptable way to do that. If I asked someone what they do and they said, “Right now, I’m really enjoying learning how to knit!” or “I’m accumulating too many books” then I have a jumping off point for further conversation (“I’ve always wanted to learn how to knit but being left-handed it’s hard” or “What’s the best thing you’ve read recently?”) Yes, there will be some people who push you to say what you do for a *living,* but they are then the socially clueless ones (particularly in this economy) and you don’t need to be the slightest bit awkward in saying, “I’m currently not employed, but what do *you* do?”

        2. I generally say something like, “What have you been up to lately?” (Generally with people I know at least casually) I feel like it opens the door to talk about hobbies and other non-work things.

          1. I like that so much better than “what do you do”! Sometimes I’ll volunteer something about myself first, “I’ve had a really [busy/hectic/boring] week, how’s your week going?” because I think it seems less intrusive that way.

      2. My mum was once complaining about my dad’s relative lack of interest in socialising (I mean, obviously he shouldn’t have to do it if he doesn’t want, but she finds being practically his whole support system pretty draining sometimes) and said “I don’t know why he just can’t walk up to people and say ‘WHO ARE YOU AND WHAT IS YOUR PURPOSE?'” After I stopped laughing at the idea this was a standard small talk I wondered if maybe it should be. I have actually said it few times though obviously I had to explain why if I didn’t want to freak people out.

        For serious, a friend suggested “What do you do with your time?” which allows someone to tell you about their work or their passions or both as they wish.

          1. Dooooo it.

            You do get pretty interesting answers. “My purpose is to be an illustrator.” (she wasn’t currently an illustrator.) “My purpose is to look after her (i.e, the aspiring illustratior).”

      3. While I share most people’s dislike of “What do you do?” (even though I have an easily explicable job), I find variations of the question like “What do you do with your spare time/when you’re not doing this” etc to be very awkward because I don’t like ambiguous questions. I have trouble working out what people mean and how I’m supposed to answer. I sometimes feel like shouting “What are you REALLY asking me?!” in response.

        I get that it’s a well-intentioned variation but might still make some people feel they are being put on the spot. I don’t have any conditions or disorders that I know of; I’m just very, very awkward.

      4. I usually just say “Anything exciting happen lately?” People usually take it and run with whatever’s been going on [usually on the good side] and provide a jumping off point that way for conversation.

      5. I was asked this once by a woman at a party, while I was between jobs. I replied, “Flirt with beautiful women.”

        She asked, “They pay you for that?”

        I said, “They should.”

    4. Holy crap! I don’t have fibromyalgia, I’ve been working out for years, and I can’t deadlift 80 lbs. o.o Good work, basketface! That’s pretty epic.

  4. I can relate to you, Letter Writer, though I have not been diagnosed with anything – maybe because my family insists there is nothing wrong, or maybe I’m scared to go and find out what it could be. It is so important to try and find the things you enjoy doing, and keep standing up every time you’ve fallen down. And those two things are SO hard when you’re feeling pressured, alone, terrified, and fatigued.

    Even with the most supportive family, we humans are likely to put ourselves down when there is no need to do it. Imagine a bright future with a job you could like, and work in small steps towards that dream. 🙂

    1. Sissa, re: family trying to tell me there’s nothing wrong (well, they never went THAT far, but they never wanted to accept that my issues were “serious”), it was EXTREMELY validating for me to have doctors diagnose me with actual mental and physical illnesses. My parents, although they never mean to (and my mother has finally realized she does it and is actively working on it), don’t take me very seriously, but when a smarty-pants DOKTAR says it, they’ll suddenly believe me.

      Don’t be afraid to go to the doctor, if going to the doctor is an option for you. It can be a real help when people try to invalidate your struggles. (Although also note that it took me ages to get diagnosed with fibro – the depression and anxiety they were happy to diagnose me with right away, but physical health issues of the sort I have are always hard to pin down.) Also, if you really DO have a serious health issue to be afraid of, it can only help to start treating it right away.

      1. basketface – it’s funny how our nearest and dearest close their eyes from our issues sometimes. Logically I know I should go to our “family doctor”, but… there’s always a “but”, isn’t there…? … I live in another country nowadays (and have for 5 years now), and I’m not comfortable talking about my issues – in my mother tongue or in my third language. It’s weird how this excuse keeps me from seeking some kind of validation on what I suspect a mild-to-medium strength depression, and me being an introvert…. Sigh.

        I figured I could work most of this on my own, and I have for many years now, but I suppose help from a professional wouldn’t hurt. 🙂

        1. Sissa, do you have anyone on Team You that you can ask to give you some validation re: doctor’s visits to counteract your family? I have a family that belittles my health problems as well, and it’s led to incredible self-doubt about visiting doctors as an adult. The thing that’s helped me most is having some friends who will give me positive encouragement about seeing doctors, serve as a sanity-check when I’m not sure whether or not I need to go to a doctor, or just give me validation to counteract my family (“Your pain is real. You are not imagining this or being a wimp.”). If there’s someone you trust who you can ask to do something similar, it can be a huge help.

          1. Yeah, I dealt with similar belittling-of-issues for a while growing up, but now I live with my fiancé, who was super-encouraging about the importance of seeing a doctor when my anxiety went from “medium” to “EVERY NOISE IS A BURGLER.” It’s so important.

  5. I just want to say, LW, I. Feel. You.

    I am 22, aspie, depression/anxiety/fibromyalgia sufferer, and arts student, and I feel you so much!

    There is something underlying in your letter that I wanted to comment on, because I feel like you’re suffering from it without necessarily knowing. Your string of non-started project ideas like art and webcomics is something you have in common with so many arty disabled/very eccentric people (me included) and it is beginning to worry me the extent of pressure we’re putting on ourselves to be successful in this very niche way. I understand where it comes from, i.e. when you’re unable to do conventional work and you’re bursting with an inside knowledge of the most intricate and unfair ways that the world works for disabled people, you feel like you ought to be able to do something to educate people and which looks relatively easy. Just like people ten years ago used to say “Wow, my life is so crazy they should make a sitcom about me!” people are now saying “Wow, my life is so crazy I should start a blog.” Starting and maintaining a blog works for some people, but it is hard work and requires some big asks from people with social anxiety, etc (like getting comments about your personal life and work from total strangers). Many people use blogs for communication and self-empowerment but in the last few years it’s started to seem like we (disabled people who aren’t currently working, etc) feel useless unless we’re writing a blog about our disabilities.

    You are not under any obligation to “earn” your right to be a disabled aspie artist by doing the whole successful blog comic (or insert similar) thing. Just like being depressed and handsome and wearing a big coat doesn’t mean you have to be a poet, being disabled and socially kooky doesn’t make you good webcomic material, and I know it feels like we have to be educating people about our situations and making ourselves culturally valid to offset our feelings of helplessness, but… no. That is not a thing. Disability blog culture is great, if your disability doesn’t make such things hard for you, and it sounds like yours does.

    I would imagine this comment might look a bit weird to those who aren’t in our situation, but, please, LW, don’t put extra expectations on yourself. Do writing and art to please yourself, not to get frustrated with and use to prove yourself to strangers.

    And thanks, Captain, for the Chronic Babe link!

    1. Oh wow, I’m not the LW but thanks for commenting, I need to chew on this for a bit. I have a sneaking suspicion that I’m somewhere on the autism spectrum, and I have diagnosed ADHD and anxiety, and I really, really relate to what you’ve said here.

    2. I think this is a really valuable comment (disabled/mentally ill allistic writer here). I know I grew up being praised for my academic achievements and especially my creative endeavours. What I took away from that was the idea that everything I did had to be excellent and praiseworthy, that the point of my art was to get people saying they liked it, and that of course I should be happy to proudly display everything I make. Which is a real hindrance! So yeah, LW: let yourself work for yourself, if you want. It’s okay if you experiment and don’t end up with an audience-ready piece. Let yourself play; let yourself fail. You don’t lose worth as a person or an artist if you don’t have something to show for your work. It can just be a private tryst between you, your pen, and the paper.

      1. When art becomes a thing that you need to get absolutely right, it’s just piling on more pressure. This sounds like a very good time for the LW to just play – experiment with new skills, learn a new technique, sketch out a dozen ideas without feeling the need to produce The Perfect anything.
        The Amazing Kate, who organises the London Awkward meetings is bringing new craft-related stuff every month; and I notice in myself a certain reluctance to _just be bad at it_ because if you’re never (or not for many years) done something, how *would* you be brilliant? But, yeah. Brainweasels. They take many shapes, including green play dough.

    3. “Just like being depressed and handsome and wearing a big coat doesn’t mean you have to be a poet”

      That line made my night! And also reinforces that creativity can contribute to the world in small and big ways that don’t necessarily earn someone a living.

  6. I don’t know what going through most of that is lie, LW. But I do know about finding yourself Not Drawing after you used to draw all the time, and how rough it can be to get back into the habit. You’re too tired to do something big, why bother making something small, what if it doesn’t come out, eh, I’ll start tomorrow, maybe.

    “Structure” like Cap says, is a great word here. There’s lots of different variations of this, but the one I’ve noticed recently, http://toerning.tumblr.com/post/79289091165/wow-you-guys-so-many-people-expressed-interest-in , The Easy and Hard 20-Day Sketch Challenge, seems like a good place to start. Each day, there are two options for a kind of sketch to make, one easy, one harder. No rules about how it has to look or what it should be of, or how much time you need to spend on it. If you feel up to it, give yourself 30 minutes. Put a TV show on and sketch the prompt for the length of the show. It doesn’t matter if you finish or if you’re satisfied. In fact, give yourself permission to make some rubbish sketches–that’s how you get back into it. You don’t have to do every day, or be in it for the long haul. Just for 30 minutes. Or 20 or 10.

    If it works for you, there’s lots of other fun prompt-lists to be found online. It’s what I use when I find myself in that “ugh, I don’t want to draw today” mode.

    Best of luck with the everything. This is just the only part of it I know enough to talk about.

      1. Seconding the coloring! It’s my bare-minimum-creative-outlet activity as well… something I’m capable of when all I want to do is zone out and watch tv, and even knitting seems like too much effort. Speaking of which, I haven’t colored for awhile, maybe I should see about doing that. Hmmm.

        Anyhow, I have been doing this for long enough, off and on, that I’ve spent a lot of time looking for coloring books I like. I have a whole list of coloring-for-adults things in a blog post I wrote awhile back.


  7. I would also suggest to try swimming or at least getting in the water. I know a few people who have different kinds of physical challenges (recovering from cancer, arthritis, physical injuries from accidents) who have found it very helpful. Even just getting into the water and moving around gently can help. Some places have water exercise classes if this ends up helping you. For some people, gentle swimming (just paddling around) is like a moving meditation. And find a place that has the water heated enough so that it is very comforting and soothing.

    1. For most people, water is very, very easy on the joints and bodies (which is why older people tend to gravitate towards water activities.) I don’t know anything about fibromyalgia (sp?), but I do know whenever athletes get bad injuries, their workouts get moved to the water to avoid pain/making things worse.

  8. Something that helped me when I was being diagnosed with depression is getting a full (and I mean FULL) set of bloodwork done. Thyroid issues, vitamin D deficiencies, these all can “help” depression suck the soul out of you. If you haven’t had something done recently, you might want to check on that. It’s not fun, but carpet bombing my vitamin D deficiency helped my depression a lot.

    1. Seconding the Vitamin D/thyroid recommendation. My vitamin D had always been fine, but I moved from Southern California to a much less sunny region 18 months ago, and it *tanked*. I thought it was other things; the stress of moving, leaving a program I loved, my father’s death. All that was bad enough, but the almost nonexistent vitamin D (and my old endocrinologist had my thyroid WAY too high) was just draining the life out of me.

      1. I know that the LW said that their doctor is out of suggestions, but many doctors don’t think to test thyroid or Vit D, and you are so right, either of these issues could be part of the exhaustion. Good suggestion!

      2. I live in AZ, which is probably the sunniest place on the planet, and I never thought vitamin D would be a problem for me, but it turns out I’m very deficient. And also hypothyroid. So yes, I would third the recommendation to get tested. And recognize that the AACE (in the U.S.) changed their guidelines on what is considered a “normal” range for thyroid hormones (making it much narrower than before) but many doctors/labs haven’t adjusted. It’s good to talk to someone who is well-versed in thyroid issues as even sublinical hypothyroidism can lead to depression and very low energy.

    2. Seconding this very much! Having iron/vitamin D/thyroid/whatever levels be way off can really exacerbate being depressed and exhausted. Fixing those, if you have them, isn’t a magic bullet but it will mean you’ll have one less thing dogpiling on you to make you feel worse, and at least in my experience “fixing”=take X pill Y times a day, which is doable.

      Also, for me anyway knowing something was off helped because instead of it being like, “Why the FUCK am I SO FUCKING TIRED ALL THE FUCKING TIME,” I had a concrete thing that I knew was making my other health problems worse, so I didn’t beat myself up as much because it became “My level of XYZ is off so I am taking supplemets to fix this” and not “I am a failure who can’t even get out of bed like a normal person.”

    3. Yes–I had hypoglycemia undiagnosed for a long time, and it was just making everything worse, and no one thought to check for it (because I had very atypical symptoms) until I figured it out myself. Incredibly simple/easy-to-fix things like blood sugar or vitamin deficiencies can have drastic consequences.

      Full blood panel. Insist on it.

    4. This happened to me too. I got really sudden depression one day for no obvious reason, and with no prior history at all (not even family history). The school counselor said it sounded medical, and sent me to the doctor. They did some blood work, and it turned out that, after living in the cloudy Pacific NW for 3 years, my Vitamin D had gotten alarmingly low (the doc sounded a bit freaked out, actually). My iron was also low, but that had happened before, while the Vitamin D thing (like the depression) was new, so I think the depression was more likely due to low Vitamin D. In any case, a few months on prescription strength iron and D supplements seemed to make the depression go away, and I’ve been fine for a year (now taking OTC supplements to keep the problem from returning).

      I know not everyone’s depression has such an easy fix (unfortunately), but it’s certainly worth checking out.

    5. Yes! THIS! Hypothyroid mimics the scenario above, never enough sleep, no motivation, lethargy, and then guilt,anxiety on top of it for not getting anything done. I was atypical body type for hypothyroid issues, and *several* doctors didn’t even think to check. Amazing change when I finally got diagnosed and on proper meds.

      1. Yesssss…I actually had my thyroid completely removed, and after some traumatic events had assumed that my being tired and spacey was just due to depression and such, because that would be completely understandable. Turns out it was also due to the fact that depression made me much more likely to forget to take my thyroid meds, and so my TSH was 12. It should be between 0.1 and 1 for a thyroidless person. Nobody’s should ever be TWELVE.

        1. I believe mine was 19 (with thyroid) when I was diagnosed after a blood panel done as part of a routine physical. 😀

        2. Yeah too high is as bad as too low, for different reasons but often with similar results. Tired and depressed sounds like LOW thyroid to most people, but high can do exactly the same thing!

          For example, it took an internet message board to clue me in that my dose was too high (also totally thyroid-less here. Solidarity!) when someone said that their nails kept breaking. I had no idea that was a side effect. They were all appalled that my endo never checked my nails, which at that time were constantly breaking and driving me nuts because I already cut them way short.

          The new endo has been taking me down a dosage level every single visit for over a year now, that’s how overdosed I had been.

      2. Yesss. I recently had my thyroid removed, so my endocrinologist has given me a very detailed rundown of the symptoms of hypothyroid (and hyperthyroid) so I know what to pay attention to as we experiment with finding the correct dosage for my shiny new thyroid hormone meds. Hypo symptoms paradoxically include being tired all the time but having difficulty sleeping, as well as depression, sadness, frequent crying for no apparent reason (or for what seem like silly reasons), and general lethargy, like Lisa said. It’s worth looking into, if somehow your doctor has missed it.

  9. Just a logistical thing: if the LW does indeed apply for and obtain financial benefits, depending on where they live, putting money into savings may not be that feasible. Disability programs, at least where I live, do not like people to have a lot of resources. For example, if you have more than $2500.00 in the bank, your Medicaid/SNAP benefits can be shut off. I’m not sure what the resource limits are for other areas, but it’s worth looking into so that LW does not end up saving some money and having it backfire.

    Also, in a lot of places, those who are eligible for disability benefits are also eligible for Vocational Rehabilitation services at no cost. Depending on where the LW is in their decision to try for a job or not, a VR specialist can be of great help in accessing employment opportunities that are feasible given the LW’s situation. They do everything from career interest assessments to vetting potential employers to helping with resumes/cover letters. There also may be funds available to assist in returning to school if that’s what you want or even to purchase interview outfits and job uniforms. One of my former clients was on disability for PTSD and depression and when she felt ready to return to work, Voc Rehab paid for her to take a phlebotomy course and also paid for her scrubs and other equipment. It’s a great resource if it exists in your area (I realize this reply is US-centric and I don’t know where LW is from, but I figured I would share just in case).

    1. Opening an savings account in her parent’s name could circumvent that. She could transfer the money into her name when she’s ready to go off services.
      I had to go on services in my mid-twenties, and it helped me tremendously, but I really had to learn to work the system in a way that was not natural to me at first.

    2. +1. Unfortunately public benefits can be super complicated. It might be worth looking for a legal services hotline of some kind to help navigate that particular minefield.

      1. Yes, do. I’m a Social Security benefits lawyer, so I know how complicated it can be and how the particular facts of your situation are greatly going to affect the advice someone can give you. Most places have a legal aid agency of one sort or another. You might have to call around a bit to find yours.

        Also, with the Obamacare rollout, more people are able to qualify for Medicaid than previously. That might help with some costs.

  10. Please give yourself credit for the 10 minutes of yoga a day! Maybe think of it more as a visual promise to yourself to take care of your own needs and value your body than as a treatment that may or may not work.

    Rituals MATTER. I have cyclical rather than constant mental problems, so I cannot speak to your exact circumstances, but I know that in the lowest parts of my cycle any tiny bit of regularity and initiative on my part make me feel more in control of my life and more kindly toward myself (what you take care of, you love; what you love, you take care of: it is a vicious cycle!) I am talking as small as: taking my antidepressant and my iron supplement every morning at 8 AM. GOLD STAR FOR ME, I CAN ACCOMPLISH THIS ONE THING WITH REGULARITY AND DEDICATION.

  11. Hey Exhausted! I graduated from artschool a little more than two and a half years ago, and like you, my graduation was followed by two years of doing pretty much nothing, isolating myself socially, and generally having pretty much a depression. I think my situation was never quite as severe as what you’re describing, but I showed many similar symptoms. I relate and feel for you.

    I’ve been able to get healthy again about 6 months ago, and I’ve been doing really well since. Here’s a couple of things that made a difference for me. Not everything may work for you, but hopefully, some things will.

    – Look up Stephen Ilardi on youtube and google. He’s a professor who researches depression, and I found his lectures and methods very helpful. You could start here: http://www.youtube.com/watch?v=drv3BP0Fdi8, and here: http://www.youtube.com/watch?v=7HDFEbsGRlA

    – Make yourself a routine, things that you want to do every day. And – this is very important – be *realistic* about it. They can be very small things at first. Be really honest with yourself and what you think you can handle, rather than ambitious. Making a routine and failing to keep it up is demoralizing. Making a routine and actually sticking to it is very uplifting, no matter how “minor” that routine seems. The next 3 points are basically suggestions for your routine.

    – Google “baby [animal]” once a day. Baby elephants, baby seals, baby dolphins, baby whatever. It’s very silly but it works so just do it.

    – Leave your house every day. Just do it. It doesn’t matter if you end up not doing anything at all. It doesn’t matter if all you do is take a 30 min walk. Just leave your house at least once every day.

    – Keep doing Yoga, or find another physical activity that fits you better. For me, it was running regularly. Everybody has certain sports that they have an affinity to. Find your sport, and do it regularly, if only for a few minutes.

    – Make grocery shopping, cooking, and eating your hobby. It’s a way of taking care of yourself, being creative, working with your mind and your hands, learning and experiencing new things, and bringing some joy to your life. Now, I don’t know if this is even possible with your health conditions. But doesn’t your condition mean that you need to be hyper aware of food anyway? For me, there was a period of time when, beacuse of my depression, I was so cash-strapped that I had to become hyper aware of food, or I’d starve. This forced awareness was a burden at first, but then “obsessing” about food became like a hobby to me, and a source of pleasure. I’m still *very* conscious of food, eventhough I’m a little more flush again. And as a result, I’m eating more healthy and having fun with it.

    – Be social. I can’t really help with any concrete advice on how exactly to go about it, so this is maybe not really helpful. But I can’t stress enough just how important friends and being social are for our mental health. Also, be aware that there are different “qualities” of social interactions. Actually meeting somebody in person is the “highest quality” of social interaction. Phone and video-phone conversations, and hand written letters, are “medium quality” social interactions. Texting, chatting, facebooking, and e-mailing are “low quality” social interactions. Now, *all* social interaction is good and will help, even the “low quality” ones, but try to go for “higher quality” whenever possible. Eg, call somebody instead of texting them.

    As I said, those are just things that worked for me. Not everything may work for you, but I thought sharing won’t hurt. I hope you’ll get better soon.

    1. Also, be aware that there are different “qualities” of social interactions. Actually meeting somebody in person is the “highest quality” of social interaction. Phone and video-phone conversations, and hand written letters, are “medium quality” social interactions. Texting, chatting, facebooking, and e-mailing are “low quality” social interactions. Now, *all* social interaction is good and will help, even the “low quality” ones, but try to go for “higher quality” whenever possible. Eg, call somebody instead of texting them.

      This is *extremely* person dependent (for me, phone conversations are emphatically “low-quality’) and as stated seems like it could feed into some really problematic social pressures and assumptions (especially for people with ASDs).

      1. Agreed. I NEED meatspace social interactions to be happy but my boyfriend is perfectly fine Skyping with friends around the country and playing $mmorpg with his guild friends.

      2. Also, it might be useful to substitute “intensity” for “quality.” If I’m looking for intense engagement with a friend, then a face-to-face meeting is ideal. But sometimes I want connection without such intense engagement. For those times, e-mail, where I can take as long as I want to think of a response, or scrolling up my Facebook feed, participating only when I have something to say, is more relaxing.

        1. I really like “intensity” instead of “quality”. I still think that more “intense” social interactions have a more positive effect on our mental health, but sometimes we just can’t handle “intense”. I’m an introvert, so I know.

      3. I agree, especially for people with ASD, this assumed heirarchy of quality of social interactions may not apply. I think it’s something to keep in mind, but not in such a prescriptive way. You have to think about what is quality for you and what is easier/more challenging for you.

      4. Yep. Also, for someone with social anxiety (or at least, for me with social anxiety and also probably Aspergers) this kind of hierarchy seems like a really great thing for the jerkbrain to latch onto and create even more worries and shoulds and make a person even less functional.

    2. I like your ideas!

      Baby red pandas!

      When I was pregnant with my second son, I was so exhausted that I couldn’t sit upright for more than 10 minutes at a time, for months, so I spent most of them in bed. My social life pretty much consisted of hanging out on MUDs, which are text-based games like MMORPGs. I had one for conversations (everybody there had known each other for years) and another one for wandering around and exploring, by myself. There are even more places to hang out socially online now, with an avatar, not all of them with a game environment.

    3. Seconding the “find your activity!” I know lots of people love yoga – but it honestly bores me.

      Exercise of any sort makes me feel good, but endurance sports, anything involving water and sunshine, and dancing are so much better for my mood than anything else. (Turning on my Lady Gaga Pandora station and dancing around the house actually makes housework bearable for me.)

      Maybe you’ve tried lots of things and yoga is your favorite, but if you haven’t, maybe consider slowly trying other things, like powerwalking around the house twice or doing a basic salsa step to one song.

    4. I love the idea of scheduling a daily baby animal break. I might just set an alarm on my phone. :3

      Like other commenters have said, I don’t think the hierarchy of social interaction works quite the way you describe for a lot of people–for some people IRL interaction, phone, and video communication are overwhelming and overstimulating. And that group, and people on the Autism spectrum, overlap quite significantly. Text communication can let you decide just how much or how little you want to engage, which keeps it from being too much.

      However, something that I really would recommend if at all possible is physical contact with humans or animals. It affects us on a very physiological level–positive, welcome, wanted touch counteracts our body’s tendency to leap into fight-or-flight mode, which is really good with something like anxiety where you’re basically marinating in stress hormones 24/7. It also has proven benefits for blood pressure, the heart, and the gastrointestinal system. This is why babies in NICU are massaged and cuddled as part of their treatment.

      Which, it can feel weird to ask as an adult child, but asking your parents if you can seek them out for 15-20 minutes of cuddling every evening can reeeaally help. Or dancing together, or getting a back rub/massage, or having your hair/nails done, or getting a shave. Or seeking the family pet out for a skritching session or synchronized nap.

    5. These are all great suggestions. But I’d add ‘Don’t beat yourself up if you only manage to do these things two out of three times, or one out of three.’

      When you do something healthy/constructive, give yourself a big high five. When you don’t, just do your best to drop it from your mind and focus on what you could perhaps do next if you felt like it.

      1. Everybody is different, but in my case, this wouldn’t have been good advice, since I tend to be a little too forgiving with myslef on that front, and before I know it, I’m not doing my routines anymore, and I’m back at doing nothing at all. That’s why I say: be *very” realistic about your routines… but stick to them!

        Also, I should have written but forgot: LW, give yourself credit for the yoga that you already *are* doing regularly! That’s awesome!

  12. One thing that struck me was the “completely exhausted for the rest of the day – sometimes for more than one day.”

    I know it might sound defeatist to people who don’t face these sorts of problems, but you should, at least for the time being, factor this into your decision-making. So instead of getting down about the “problem” of not being able to do much or anything at all after you go somewhere or do something, plan for it.

    That way you can’t overcommit yourself by organising an outing or some social event the day following a therapist appointment. You make sure that those sorts of things are separated by 24-36 hours. You keep control by pacing yourself instead of allowing yourself to feel let down or controlled by bodily weakness/fatigue/pain.

    I’ve had to do this for quite a long time now and it’s sort of automatic, so I don’t think much about it until someone proposes something on the day between two existing commitments. But it makes life a lot easier.

    1. This is great advice.
      I’m just now starting to do this and it has been a game changer in feeling more competent and in control of myself.

    2. Yes, this. I have a cogenital myopathy, and the most important lesson I had to learn was how to distribute my spoons throughout the week. It’s still hard for me sometimes (combination of ‘but the other people can do this just fine!’ guilt and a hyperactive mind who wants to do all the things all the time preferably RIGHT NOW) but I’m learning.

      Push your limits bit by bit, but be realistic and be nice to yourself.

    3. Yes, this is really important. I struggle with this and I don’t have any chronic medical things – I just haven’t figured out how to manage the various facets of my life after a big change. It’s really hard! I can only imagine how much more crucial *and* difficult this would be if you are also dealing with a chronic condition on top of it. Be kind and patient with yourself.

    4. Great point. I used to have a friend who had made a fine art out of figuring in rests and naps during her day – she knew exactly what her limitations were, and she had worked out what would help her – from tools to furniture to scheduling (… and then I’ll sit in the van for fifteen minutes, and THEN I’ll go into the shop…). Not fighting means that you can use the time and energy you _do_ have better. And most people (parents probably, sigh, excepted) don’t care *how* you achieve something, and they need never know that you take a rest here and buy pre-chopped vegetables there because the difference between ‘do all the preparation’ and ‘open bag’ means you actually have the energy to cook the damn things.

      1. “the difference between ‘do all the preparation’ and ‘open bag’ means you actually have the energy to cook the damn things.”

        This is so true.
        My dad called it half-assing things, and had a room full of unfinished projects, and art that was never ‘good enough’ to show anyone. I like this way better.

  13. I’m inclined to agree with those above that you should consider trying a different therapist if you feel you haven’t made any progress. But I’d also add that it’s very much okay to ask this therapist or the new one to help you create this structure and/or encouragement you think you might need. Your therapist’s goals with you are going to be mostly what you indicate you want them to be. Make sure whoever you’re seeing knows that this is the sort of direction you want; they’ll help you think through whether these are good and realistic goals for you and work with you on finding ways to make it happen.

    Maybe you need some sort of outside party to help; the term “life coach” is so hackneyed but there are surely folks you can find that will help you in that way – a little more hands-on and encouraging than your therapist and less personally invested than your parents. I’d make sure you get your therapist’s help in setting this up so you don’t get someone who pushes you inappropriately. But sometimes we need these disinterested professionals.

  14. Sometimes, putting things in place as if a crisis is going to last can be the very thing that helps you get out of it sooner. With a lot of illness and disability-related stuff, the power of positive thinking is drummed into use to the extent that we can see steps like getting benefits, equipment and accommodations as giving in. In fact, these things free up energy, time, money and other resources that might be better spent on improving our lives.

    Something that might help on top of other advice is to give yourself a timescale – like six months or a year – and think, “This is the situation I have to live with for X period of time. How am I going to make this period as comfortable and enjoyable as possible?”

    If your health improves, if something really interesting comes up, then none of the Captain’s advice is un-doable. Work with what you’ve got right now. Good luck!

  15. Suggestion from personal experience: If the LW is taking an antidepressant, they may want to ask their doctor about trying a different one.

    The LW’s description sounds so much like my experience on certain SSRIs. The technical term for it is “hypersomnia.” I felt like I’d always just taken a sleeping pill — I always felt a pull towards sleep, and it got physically painful to fight it for very long. I slept 12-18 hours a day, and even when I was awake, I was too sleepy to do much more than sit on the couch and stare at the TV. I felt so guilty and angry at myself that I couldn’t just wake up and get things done. My partner got frustrated and angry with me, too. I was in graduate school and should have been doing lots of research and writing. I worried that maybe I was just scared and trying to avoid my work, and my partner totally thought that was the case.

    I told doctors that I had trouble getting up in the morning, but for a couple years, I felt too embarrassed and guilty to tell them the truth about how much I slept. I thought it was a personal failure, and I just needed to try harder to be a responsible person and get up in the morning.

    Finally, I got fed up. I told my psychiatrist the exact truth about how many hours a day I slept, how many naps I took, and how little I was able to get done in my daily life. He told me that being that tired all the time was not normal, and was something we could work on. He sent me for a full panel of bloodwork — tested for anemia, vitamin D deficiency, thyroid problems. It turned out I was severely vitamin D deficient, so now I take supplements.

    And he also realized that hypersomnia can be a side effect of some SSRIs, and asked me if I wanted to try a different med. I did. On the new med, I can actually wake up and function. My energy is still not 100%, but it’s maybe 75% — instead of about 10%, which is what it was before. (Also, my partner accepted that my sleepiness had been something I actually couldn’t control.)

    So yeah. Definitely ask for a new counseling referral. If you’re on any meds (not just antidepressants), ask whether they could be contributing to your exhaustion, and ask if you could try a different med or a different dose. And as I learned, it helps to be very specific with your doctor/counselor about exactly how long you sleep, how many naps you take, what you are and are not able to do. “I’m tired and I have trouble getting up in the morning” seems to sound less serious to a doctor/counselor than “I slept for 14 hours straight every night for the past two weeks. Each day I was awake for about 2 hours, then I needed another 2-hour nap. I went to the grocery store on Tuesday for half an hour, but then I was exhausted and needed an extra nap that afternoon and on Wednesday.”

    1. Seconding this.

      Two people with the same diagnosis can respond very differently to a medication. Also other illnesses can be affected by the meds in unpredictable ways.

      Mental health professionals will usually start with the drug that works the best for the most people with your condition, but a good one will know that X% of people won’t respond well, and be prepared to work for a solution that fits you.

  16. Hi LW,

    I know you’re not me but the depression, anxiety, fibro plus other stuff combination is also my story. I don’t know where you live but if you’re in the UK, getting disability benefits doesn’t prevent you from working if/when you feel well enough to do so. Please do get your benefits, they are there for people just like me and you. We deserve them. no matter what other people think.

    I also get something called Adult Social Care which involves people coming into my house to help me cook, to wash myself and to keep my house clean. I strongly recommend looking into your options for something like that. I didn’t think I’d be eligible for this kind of help but I’ve just been approved for long term care. Even if your parents are helping you with much of that stuff, you may still be able to get some help to give them some time off. This too isn’t “giving up” or any of the negative things people might say about it – this support exists so that people like me / us can live our lifes instead of just surviving them.

    I am your age and I know it’s scary to think “but what if I can never work full time?” but working full-time / at all isn’t necessary for a good life. See what financial stability you can get hold of from benefits and similar and then do stuff that you *want* to do and maybe some kind of part-time or flexible work will come along.

    1. I’d also like to add:
      Make sure you’re taking stuff for the pain. As scary as it is, be prepared to ask for dose increases and/or to try other medicines. Some chronically ill people boast about not taking anything for the pain but you don’t have to be like that and I really, truly suggest taking stuff for the pain because *pain is tiring* and more so than most people realise.

      The things really, really helping me are mainly:
      Pain relief
      Financial Security
      Social care
      My cane
      Disabled friends on twitter

      in that order.

    2. Yes!

      I put off getting benefits out of pride, but once I did it was so helpful!

      If you are in the US it isn’t an easy system to navigate, but there are a lot of great people who are invested in getting you set up with the resources you need to figure out how life is going to work best for you.

      I went off benefits over a decade ago, and will probably have to go on them again before retirement age, but right now I am contributing emotionally and financially to my family in a way I could never have done if I hadn’t taken advantage of those resources when I was younger.

  17. I have this horrible triggering thing that is happening ot me right now in a dance class. She is making us do yoga. I hate yoga, not because there is anything wrong with yoga, but because I totally suck at it in a way that makes me feel hopeless and pathetic. I can’t touch my toes because of my size, plus I have major flexibility issues in my ankles that make things like “now rock back on your heels and stand” or “step into downward dog” a thing I cannot do.

    Like, I can’t. And I probably never will be able to. But because I”m a big fat person, I feel like people look at me, struggling to just fucking stand, and think “Man she’s just not trying hard enough” or some other horrible thing about how much I suck.

    I’ve had a lot of times in my life where fitness professionals have stood over me and told me that I CAN do it and I just need to PUSH MYSELF. And the scars of all of that just keep coming back to haunt me while I am failing repeatedly at yoga. Because sometimes you can’t, and having someone tell you that you can and you just need to try harder, has been, for me, really traumatic. Just admitting that you can’t do something totally sucks, so to have someone push you and tell that you CAN do it and you’re just lying to yourself. Well… that is the most unpleasant.

    The nice thing about Yoga, which I still hate, and you cannot make me like, but I totally respect your enjoyment of, is that it allows you to modify things to make it work for your body. If you have a good teacher and a comfortable environment you can modify poses and use tools to still get the same benefits.

    This is also the nice thing about life. Maybe some days you can’t, but what you can do is arrange your life to make things easier for yourself. You can put things up on blocks, lean on a chair, sit on a towel. You can start things, and finish them later, you can find things that give you joy, and use them to motivate yourself.

    Should, can, try harder, are for me, the WORST motivators. They just make me angry. Especially when you feel tired or down finding things that you WANT to do matters so much. And it’s not just about the end game “I make a webcomic and become a famous web comic maker and make money.” It’s about finding something that you enjoy enough that you would enjoy doing even if no one else ever appreciated it. Something that you do just for you. And if you decide to share it, that’s great.

    I know that you will get some great advice here f, and I hope that you can find a way around can’t and should. (I also recommend coursera, for some great free classes, that have a little more structure. (If you want that, I NEED it.) )

    1. Oh, man, can I just say, crummy yoga instructors (and fitness instructors in general)! I’m not sure which makes me feel worse, having one stand over me and insist that I CAN! DEFINITELY! DO! IT! TRY HARDER!, or being in a class where I can’t do something and the instructor very pointedly doesn’t look at me wobbling around or struggling and never offers any modifications or help for people who are having a hard time with a move or pose.

      And I actually enjoy yoga, generally, even though I’m not very good at it. Sometimes I wonder how many people are put off by bad instructors.

      1. I looove “mean” instructors or workout buddies – but I definitely know people who don’t!

        Instructors are like doctors or candy bars – you gotta shop around until you find one you like and it’s perfectly okay to love Kit-Kats but refuse to ever buy Skittles.

        1. I totally love a teacher that will push me to do more reps or to work harder. I need that, because I am lazy as fuck. I had a trainer for a while who was great at that, and he would give me the total side eye if I got lazy.

          HOWEVER when someone says they can’t do something, not in a “I can’t do another rep.” but like I am physically incapable of doing a handstand and it would be great if you would not tell me I can repeatedly in front of this group of people and make me feel like shit. That’s not like “empowering” mean, that’s like “Public humiliation because I don’t know how to accept that other people’s bodies have limitations” mean.
          And also “I’m going to push you into probably inuring yourself” mean.

          There are just some things that people’s bodies can’t do at that time, and telling them to just try harder is likely to lead to serious injury. It’s totally cool to be like “here are some things for working up to this.” (We’re working on doing the splits, because LOOOOL. But we’re working on it, no one is yelling “DO IT RIGHT NOW.” And I’ve encountered a lot of fitness people like that in my life.)

          1. Ah. I don’t think I’ve ever been in a class where I’m incapable/risking injury by trying something (minus a few impact issues that I let instructors know about beforehand.) So I’ve honestly never been pushed to do something I can’t do: the impact thing is from a common athletic injury which people understand/respect and I don’t fear getting hurt from trying other things – I’m generally hardy, able-bodied, and minor injuries remain minor.

            I do have friends who are similar in able-bodied-ness to me and don’t respond well to harsher methods; whether or not they can do the workout, they’re left feeling pretty awful and need a totally different approach, which is what I was thinking of.

            But being told to do something you know you can’t or that has an unacceptably high risk factor – no matter how everyone else in the class handles it – sounds awful. (And I don’t know about you, but I would probably already have a hard time accepting my limitations and appreciating my body for what it can do, which would make the situation even worse.) Good instructors and coaches work around people’s limitations, not through them.

          2. I went to a fantastic gym which pushed you but accepted your limits. For example, while trying to do bicycle crunches (invention of the devil), I knew I wasn’t very good at them, but I tried. The woman next to me was doing it as if it were the easiest thing in the world and I felt particularly useless. And when the instructor for the class came around, he looked at me doing my best at them and said ‘Great job’. It felt so good to be considered on my own physical merits that it still makes me happy now. There is a huge difference between pushing to improve and pushing past someone’s limits…

      2. I know I certainly was. The only two yoga classes I ever took ended with a neck injury and a strong sense that my instructor wanted me out of the class because I’m fat. So yeah – try many different exercises/activities and find the ones that work for you! For me cycling, running, swimming and weight lifting are all great, and yoga is something I won’t touch with a ten foot pole. :-/

    2. So much this. I have really tight hamstrings to the point where I have never ever in my life been able to touch my toes. Now overweight and with fibromyalgia, those toes are even farther away than ever. Compassionate yoga teachers taught me modified poses and how to pace against my own body. Not what I should be able to do but what my body is up to today. And if it is too hard to get into a full class or do a real routine, I can still do a hip opener in bed to ease the pain of needing to sleep too much… Back stretches… Stand on one foot for a little while, which both eases the pain of standing and gently builds both strength and balance. Do a lying down eagle twist since a standing one makes me dizzy but a lying one makes my spine feel so much better. Puppy Pose instead of the dreaded Downward Facing Dog.

      And that lesson can be applied to other things. I start new things gently, mindfully, and ramping up in a way that pays attention to how my body feels. Not how it should feel, not how it felt before I got sick, and not how it felt last week when I was having a worse or better day. How it feels today. This isn’t very natural to me; I used to push myself very hard and think of mind over matter. But it is sustainable and lets me build myself up better than pushing against my new limits and then suffering backlash ever did.

      I started out walking halfway down the block and home, when I could. Now l can walk 20-30 minutes a day, every day. That’s even more precious given that I had to rehab back into it again after breaking a foot and being too weak after years of fibro to use crutches, so I had to rehab walking out of a wheelchair. But the first time through made the post-break rehab easier, and the bits and pieces of yoga classes I’ve managed came into play for getting my balance, flexibility, and strength back.

      I may never do regular yoga classes again, but that modification mindset, and the cultivation of self awareness, are lessons I will keep forever. I love walking so my thing is structured around that.

    3. This right there is why there’s only one yoga studio I’ve been to that I’ll go back to a second time–and that’s the one where the instructor kept saying, “Don’t push yourself if it feels unnatural; accept your body for what it is doing, not what you think it should do.” If one of us was struggling or had serious physical problems with a pose, she’d be right there to provide a bolster or block. There was none of this “just try harder” bullshit.

      1. And my dance teacher is TOTALLY not pushing me like that. But she’s a DANCE teacher. And she’s super skinny and fit and all that, so she has like no idea what to tell me to do. Fortunately the internet is full of curvy yogis, and my sister is a yoga instructor, so I’ve ordered some blocks and I”ll keep trying, but for whatever reason it is just super triggering for me.

        Like, I am so far past needing someone to stand over my shoulder and tell me I suck. I do it to myself, because I’ve had so many people do it to me. It’s just like “don’t say CAN’T if you were a better human you’d be able to do this and you wouldn’t be making excuses.”

        And then it makes me miserable. The thing is, sometimes you can’t. and that’s fucking okay.

        1. I guess I have more of the fear response in the dance scenario than yoga. I just started a new dance class, and it’s fun, but it’s very hard to explain to a teacher, “Yes, I KNOW I am doing this step wrong, but you need to GET THE FUCK OUT OF MY FACE because A. I cannot do better than I am doing right at this moment and B. you are making me afraid of you, which will decrease the likelihood of me EVER being able to do what you are asking.”

          1. B. you are making me afraid of you, which will decrease the likelihood of me EVER being able to do what you are asking.”

            I HATE that feeling. So much. It’s pretty much my natural response when I’m trying to do something unfamiliar and not-quite-natural to me (which for me means anything that involves interaction with other humans) and when I have someone standing over me correcting me in unfriendly tones…it just makes everything worse.

          2. Yeah my dance studio is in general pretty low key. A lot of it involves using your body in unnatural ways, so it’s really about finding how your body works with the moves and what works for you. I’ve never had a teacher really “Correct” me in anything but a gentle way. Like “You need to tuck your pelvis more and focus on driving the energy from here.” or things along those lines. Having someone tell me I was WRONG would also freak me out.

    4. Aw, dangit, shinobi42, that sucks.
      I’m sorry you had such crap experience with fitness professionals. As a yoga instructor, I’m especially sorry about the yoga instructors who were anti-helpful to you. I just want to say it doesn’t have to be that way.
      For one thing, if my students don’t get what they need from practice with me, if everything we do “sucks” for them — I consider that my failure, not theirs. For another thing, I’m not gonna tell anybody else what they “should” do–they know themself better than I can, and I’ve got no reason to insist they do one thing instead of another, because yoga isn’t about being able to stand on one foot or fold over and touch the ground or whatever—so adapting your practice to your needs isn’t cheating or using training wheels; it is appropriate. The oldest known text about yoga even says, rather than try harder, to take a posture that feels steady and comfortable: “Sukha sthira asanam.”
      Coming back to the LW, I think, like Shinobi42 seems to, that this is good advice for more than just yoga. In modern Western culture, accomplishment is greatly valued, and there is a lot of free-floating judgment about it (which we soak up and apply to ourselves more or less, regardless show much or little is directly expressed to us by others). But there is nothing wrong with being gentle with yourself, scaling your challenges to what you can realistically do without comparing it to what you “should” do, allowing yourself to take advantage of any resources that can make struggles easier. If you need to hear it from an authority figure, this wise guy Patanjali from one of the older mystical traditions we have record of said so sometime around the year 200BC.

      1. Yes, that was 100% my point that got lost in complaining about bad yoga instruction from non yoga teachers. You have to find what works for you, so important.

    5. Oh I hear you on the flexibility issues. It was only doing yoga a while that I could FINALLY touch my toes! And six months on, I can only touch them for a second and then I bounce back up. ACK. I’m actually pretty athletic aside from that, but my flexibility has been a MASSIVE issue for me as far back as my memory goes. And for years and years, people would be horrible about it, “straighten your legs, come on, at least TRY,” and I would be trying! Sweat would be rolling down my face, I’d be shaking, I would be in pretty bad pain AND STILL NOT GETTING ANY LOWER. For me it’s being told that I wasn’t trying when I really, really am. I’d try SO HARD, it’s incredibly crushing.

      So unsurprisingly my flexibility became a source of massive SHAME. I try to joke about it but I’m not sure people realise how much it bothers me when people say “oh wow, you can’t even do this?” and then bends some way effortlessly.

      Sorry if it seems like I’m derailing, I just felt the need to say something. Another guy I know once said “yeah, I’ll break before I’ll bend.” YOU ARE NOT ALONE ON TEH FLEXIBILITY.

      1. OMG, word. Even when I did ballet and gymnastics as a child on a regular basis I had a hard time doing even a lot of “normal” flexibility things. I recently started doing equestrian vaulting, which is … kinda like trick riding, but someone else controls the horse from the ground? Anyway, it has a lot of gymnastics elements and flexibility is definitely desirable. The coaches I’m working with are mostly great (and mostly used to teaching beginner kids and having adults and older kids be more advanced than I am) but sometimes they act like I’m just not trying to keep my leg straight or my hips not tucked enough or w/e and it’s like, no, no, this is literally as far as it goes! Please stop acting like I need to try harder because I don’t! Instead, give me other ways to improve flexibility, don’t just yell because I can’t do it!

        And I have similar shame about it, so, yeah, it’s frustrating. But there are lots of us nonbendy people!

      2. I’ve never been particularly flexible either, and despite being in sports where we did stretching for most of my childhood/adolescence, I never seemed to get any better.

        Yoga was the only thing that made a difference…. but it took a LONG time. Like, a solid month of going nearly every day before I noticed improvement, and months after that of several times/week before I started hitting big milestones for me… reaching past my toes, etc. Now I’m actually one of the more flexible people in low-level classes, which is pretty crazy to me. But again… took a long time to get there.

        I just wanted to chime in and add this because I always got the idea that improvement should come faster, and if it didn’t, well then there was something just fundamentally wrong that meant I was never going to be flexible, so I may as well stop trying. I’d even had fitness instructors say things like “do x every day for 2 minutes, and in a week or two you’ll see big improvements”… which is so not the case. I can do ordinary stretching for 5-10 minutes EVERY DAY and not really get anywhere… I needed the long, sustained active stretching I do in 30min+ yoga sessions to start seeing improvement. So don’t give up just because it takes longer than you feel like it “should” to improve, and don’t feel like *you* are failing. If you are showing up and trying, you are succeeding.

        1. Totally. For the really tight muscles it might actually take YEARS of yoga practice to notice a real difference, and even then there are obviously some differences between people. I have been practicing yoga for 5 years and forward bends are still relatively hard for me. Thankfully, I’ve always had good teachers and my yoga practice has made me happy about my strengths and way more forgiving about my weaknesses. But I hear everyone complaining about crummy yoga teachers, it can be difficult to find a good one.

    6. I would venture to say that in most classes yoga people are way more concerned with not fucking up their own shiz than with what you’re doing. I imagine this is especially true in a class where the focus is not yoga but a different type of exercise. I used to have this same self consciousness about yoga because I am not bendy at all – like when I started I could touch just above my knees. It helped me a little to think about the people who were doing it right and where that meant their eyes were. Anyone in a successful downward dog or forward bend is staring at their own bellybutton or the floor respectfully and literally cannot see you. It helped me feel less awkward about those poses.

      1. Rereading this it came off maybe a bit preachier than I intended. Of course you have every right to hate yoga and I have met yoga teachers who were jerks! I only thought to offer a strategy I’ve used to maybe get through these moments a little easier since you seem to enjoy the main activity of dance class and it’s a necessary evil.

        1. Yeah the women in my class are all lovely, and I’ve been studying with them for over a year. So I don’t feel like they are judging me, they are all super nice and encouraging. But this just brings up 100000 bad memories of really bad experiences. It is not something I am currently able to rationalize away, which is like, EVEN MORE FRUSTRATING. I appreciate the thought though.

  18. Hi LW, wishing you best of luck here. I have only two things to add to the great advice here:
    1) Coursera is another great place to find free online courses from well-known universities around the world.
    2) When you start to think “I can’t do anything”, remember you completed a B.A. That’s a great accomplishment your health problems/jerkbrain can’t take away.

  19. you rule! thanks so much for shining a light on how our site can help babes like this. i love the comment thread, too – such great advice. HUGS!

  20. Oh wow, does this post ever hit me where I live. I’m 30, and up until I was 28, I had to rely on my parents’ help to support myself, which sucked majorly. I also struggle with digestion issues (IBS), fatigue, depression, anxiety, migraines, adhd, etc., etc. And most of the time I have no idea where the line is between “can’t” and “don’t want to.”

    I think this partly has to do with the way I was brought up. My parents tried to tell me what to do, and I usually fought them by not doing whatever it was, so I never learned how to motivate myself. But I think it’s also a common thing with depression. When you’re depressed, you don’t just feel mentally shitty, but physically as well, and there’s not really any way to separate the two into neat categories. I spend a lot of time just feeling (metaphorically) paralyzed, and without motivation it’s hard to do the things that would help me have more energy, so it’s a self-perpetuating cycle. And I can’t tell the depression-exhaustion from the IBS-exhaustion or the exhaustion that comes from having a cold. (Seriously, a couple of weeks ago I thought I was having a really bad depression day, and it turned out I was coming down with something.)

    I will say that I had serious doubts about my ability to hold down a full-time job, but once I got into the rhythm of it, I got used to the long days. I’m still tired when I get home, but not much more tired than I was when I was working part-time. Not saying this will be true for the LW, but it was a relief to me.

    I’m going to read all the responses to this post once I get home tonight, if I’m not too tired 😛

  21. I wonder if the OP would benefit from art therapy, if available where they live? This could be helpful with mental health issues as well as being an outlet for creativity, and just get you drawing again and creating something, with the focus on self-expression and without worrying too much about whether it’s “good art” or not. The fear of creating something not-very-good can be paralysing in itself – even for those lucky enough to have good health.

    On the same topic, see also this great quote from Ira Glass (via Sally McGraw’s blog) on art, the creative process and the fear of failure: http://www.alreadypretty.com/2011/07/style-evolves.html

    1. The therapist I have been seeing happens to be an art therapist. Art has been a hobby, not a vocation for me, and I have felt benefit from this therapy. In my experience, it is a mixture of standard talk therapy and making art. I don’t know what other people’s experiences in art therapy might be, but here are some of the things we’ve done.
      — Drew a representation of my life and who I am
      — Drew a genogram (family tree but showing closeness or tension in relationships)
      — Created pictorial representations of stressors on the left and management techniques on the right
      — Doodled while talking
      — Colored a representation of my inner state, then did a relaxation exercise, and repeated; I could then see, not just feel, the difference
      — Played with yarn while talking about family. Afterwards, I realized it was soothing because it reminded me of my grandma’s knitting.

      If you can’t find an individual art therapist who would work with your insurance, there are some times group sessions. My practice has a once-a-month 2 hour Saturday session centered around a theme.

      I imagine that an art therapist might be particularly understanding and able to talk (and art-make) your way through anxieties and feelings specifically related to being an artist.

      All the best to you, LW!

  22. Oh. One thing I forgot. I’d recommend a book to help you get realistic about the conditions you’re currently suffering from. I only have the old edition and it’s packed away in a box anyway. Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness by Donoghue and Siegel.

    It’s a bit of a downer to read the whole thing at once. But when you have two or more of the conditions they deal with – one per chapter, thankfully – it’s a bit of a relief to realise that it’s something you can learn to live with even if you can’t get rid of it/them straight away. (Or ever for some conditions.)

    And I should add my voice to those people mentioning pain control. And just how tiring, completely draining, chronic pain is. If you can find a medication that helps you for a day or two at a time, it is really energising for those days or just for one event or outing. Even if you have to “pay” later it’s worth it.

  23. Dear LW,

    During periods of full on misery like the one you’re going through (and the one going through now), I’ve found that structure and leaving the house help enormously. For me, exercise begins the process of reducing my fears and paralysis, while leaving the house, even if only for a few minutes, allows me to experience beauty and pleasure.

    I’d also like to add a vote for medication. For me, and I stress this because people react differently, taking the correct anti-depressant has been enormously beneficial. The intrusive thoughts and carping voices recede to manageable levels. I’m better able to moderate some of my anxieties. All of this helps me to get past the paralysis that has crippled me.

    Please note that I first took anti- depressants in my 40s. It’s made a huge difference, I wish I had taken them 20 years ago.

    Gentle hugs

  24. Oh, LW, I am so sorry you are struggling like this. I am also in the grip of a pretty bad depression — and what you are talking about sounds very similar — so I really feel for you. This sucks. It sucks SO much. Like a regiment of Electrolux.

    Everyone so far has had really good suggestions in terms of concrete things like exercise and getting a therapist who is on Team You (I am also trying light therapy with really annoying blue lights that shine into my face for half an hour every morning, but I cannot recommend them in all good conscience because so far I have not seen any Life Improvement).

    My only concrete suggestion is that if you are not allergic, contact with furry creatures seems to help a lot of people. If you do not have pets yourself, there are many options for volunteering at shelters, and they are often quite helpful about arranging things so that they can work with you for, say, limited hours or whatnot. A town near me also has events like “Public Puppy Petting” in order to socialize puppies, which is delightful and you don’t even have to call anyone (I loathe calling people, personally) or make any commitments, just show up and pet cute puppies. There may be events like this near you.

    I am also losing my job in the near future (I love my job, too) and I plan to do this if people ask me “what I do:” I will look them in the eye and say, deadpan, “Crocodile wrestling.” This is not untrue. Getting out of bed in the morning requires a certain amount of crocodile wrestling when one has depression.

    Also, I try to give myself credit for doing things. If I wind up crying on the couch in the afternoon, at least I did work and laundry in the morning. Or I got up and fed the cats, gold star for turning off the furry snooze alarm! It’s so easy to focus on things I didn’t do — and I am still in the habit of giving myself very long to-do lists, which is fine when I am not depressed because I get most of it done and I am sure to get the rest done tomorrow — but when I am depressed all I can think about is how I am a FAILURE for not DOING MORE. What is actually helpful is patting myself on the back for the things that get crossed off, not hating myself for the things that are still on the list.

    As long as one is alive, there will still be things on the list. That is the nature of the to-do list. It is the zen of lists. Sometimes reducing the list to one thing helps.

    I think the worst part of the depression is the part relating to the job. You asked, “How do you know the difference between being completely unable to do something (like get a job) and being scared or finding it difficult?” The problem is that we cannot actually know. I have been job searching for a long time, trying to find a job for when my current one of limited duration is over. I have had zero luck. I cannot know whether this is my fault, because I am depressed and not doing the search as well as I might — or whether I am depressed simply because I cannot find a job (and possibly for other reasons we won’t go into now). Job hunting is really hard right now, it is scary, and it is depressing in an of itself, whether or not you were depressed to start with. This is… horrible.

    In my case, the only thing I have been able to do is to accept that I will never know whether I cannot find a job (there are none) or whether I am just too depressed to do it (I might have done it if I were better/more impressive/dyed my hair/didn’t look at cat pictures on the internet when I should have been job hunting). I just have to plod forward and keep trying.

    And I am not going to lie to you: this is fucking hard. Be gentle to yourself. Don’t blame. Sometimes I think the worst part of depression is the self-blame.

    There are a lot of good writers on the Internet who have dealt with depression, but one of my favorites is Hyperbole and a Half. If this will let me link:

    A lot of her work (Including the famous strip “Why I’ll Never Be an Adult”) applies to depression, really.

    1. About the impossible to-do list: I have fallen prey to the to-do list. I have started to also keep a ‘done’ list. Some of those things are off the to-do list, but sometimes stuff just comes up. That way you don’t say ‘oh no i wasted the day!’ you have concrete evidence of what you spent the day on. If that includes a whole season of a trashy show, fine. But there is usually something ‘productive’ in there that you did but didn’t think about unless you made a note of it.

        1. I usually try to start lists with things I have already done, because it makes me feel more accomplished!

  25. I have a similar situation – I don’t have chronic pain, but the rest sounds pretty much like I could have written this letter. One thing that did help me when I was having difficulty writing is changing my medium – I find I write better when I have ‘contact’ with the words either via using a pen and paper or a manual typewriter. So yeah, experiment with different mediums, fonts, programs, pens, paper, et cetera, and see what works. (If you do go the pen and paper route, put the work in a waterproof wallet because I recently had my notebook get wet and lost half my work, which was discouraging.)
    Also, I found setting goals like “do a bit of writing every day” rather than “do 500 words every day” helped – even if you just wrote “Elspeth sat down by the fire” well, you got some writing done, and if you’re having a crap day then it’s not intimidating.

    1. Yes yes yes.

      And have a journal that makes you feel good, but isn’t so pretty that you feel guilty writing nonsense or trivial details of your day in it, and journal a little bit every day. In pen.

  26. The captain’s advice is fantastic. I want to emphasize Meetup.com as a fantastic avenue for rebuilding a social life from scratch–it completely changed my life. (I’m anxious and don’t meet people/make friends well at ALL). One thing I might recommend for you, based on your interests…look into local book clubs? Some meetups *are* a book club, while others *have* a book club (as in, my local Sci-fi fan group also contains a book club) that meets separately. These tend to meet only once a month, you get to treat yourself to reading a new book, and then you chat with people about it over coffee for an hour or two. Low-key, pleasurable, mentally stimulating.

    Another suggestion that may or may not apply…you said you stay at home most days…as in, don’t leave the house at all? You might find that spending time outside boosts your energy–I find that lack of sunlight SEVERELY enhances my depression and affects my energy levels. I don’t mean that you have to go *out*, just maybe sit outside in a chair with a book on a nice day? It may or may not work for you–I’m solar-powered, but not everyone is. But when I’m depressed and unemployed (like right now..) I have to make it a rule for myself to go outside, every day, for ANY reason, because it makes the difference between holding the line and getting worse. I know you’re probably getting a billion and one suggestions on what to do, when you’ve probably been over it all with your doctor anyway, but, I figure this is an easy one to try. 🙂

    1. This.

      As part of my divorce, I was diagnosed as situationally depressed and advised to see a therapist. I did, and after a while realized it wasn’t the therapist that was making me feel better — it was getting out of the house and driving to the city without a toddler for a couple of hours.

      Similarly, in terms of the people suggesting think small, when my baby was first born and I was recovering from a c-section my goal was literally to brush my teeth every day. (Obviously, and feed and diaper the child.) That was it. I think it was two weeks before I even committed to getting dressed.

  27. LW. The thing that helped me most when I was deep in the bowels of depression was to get out of bed, shower, get dressed, and go for a walk. Every day, no matter what.

    You have different issues, but the point is to set yourself a minimum. Once you’ve met your minimum, you’re not allowed to beat yourself up. If you feel like doing more, great! If not, go back to sleep, you’ve done your job as a human being for the day.

    Depression brain tells you that you are hopeless so why bother. That if you were a better person you would just… blah, blah, other people deal with worse, blah, blah, it’s not that bad, blah, blah, bootstraps. Depression brain is a shithead.

    When you catch yourself being mean to yourself, take a deep breath and think about something you enjoy. It’s too soon to try to argue with Depression brain, so just practice derailing it for now.

    We like binary stories about triumph over adversity, and it’s easy to get caught in the trap of thinking that being an adult means having a partner/fancy job/nice house/401k, in spite of your illnesses. That personhood is a award you win for overcoming your hardships to fit the norm.

    That’s BS. Being an adult is about getting up and showing up until you find something worth striving for. Everything else follows from that.

  28. I’m not sure if my comment made it through, so here’s the gist of it.


    I feel for you. When I’ve been paralyzed by pain and misery the things that have helped most were: exercise, appropriate medication, getting out of the house.

    Exercise- for the endorphins, for the structure, for the improvement, however small, to my morale and health

    Medication- for the freedom from intrusive thoughts and the space that gave me to DO things

    Getting outside- for the experience, if only for brief moments, of beauty and joy

    My heart goes out to you. Gentle hugs.

  29. ## 556: What’s the difference between “can’t” and “I’m scared, don’t wanna?”

    Great advice as always – but I’d still like to hear the answer to the title question.

    1. My answer would be that when it comes to practicalities, it doesn’t matter.

      If there is a Thing you want to do and you’re not doing it, there is a temptation to try and sort it into a box of Unable (= phew! I have an excuse!) or “scared, don’t wanna” or variants like “too lazy / too useless” (= the problem is my inherent crapness, and the solution is Be Less Crap.). In practice, that approach almost never gets you of the starting block: if it was going to, it would have done by now. All it really does it provide you with an endless dilemma and an opportunity to beat yourself up on the days when you’re convinced that it’s Scared Don’t Wanna, or Cos I’m Useless, which just saps more energy and makes you less likely to Do The Thing. It’s not motivating.

      So better questions are:

      What is the Thing I want to do? Why do I want to do it?
      What’s stopping me doing it at the moment? What are the barriers? Why is it hard?
      Practically speaking, what would I have to change about the Thing to make it easier?
      Can I tackle any of those barriers?
      What’s my first step?

      (This is very roughly the GROW model – you can google it!)

      If the barrier is that it’s overwhelming / too big / scary / don’t know where to start, it doesn’t matter whether it’s a perceived energy deficit or a real energy deficit – the problem is that it’s too big and overwhelming, or too amorphous, or your ambitions vastly outweigh your motivation to get started or whatever. In either case, the first solution might be, “what is the smallest unit of Thing I can commit to, that I realistically can and will do? How can I motivate myself to do that?” It might be breaking it down it might be finding out about classes, it might be setting a deadline or creating some kind of structure by joining an online community….whatever it is, find the smallest unit of Thing and try it. Maybe you just need that starting push to propel you into more Thing, or maybe you need to keep doing that tiny unit of Thing until it becomes a habit, and then you can start to think about increasing the unit of Thing to the next level. Maybe you discover that despite all your long-held ambitions if doing Thing, you don’t actually like or enjoy Thing.

      Maybe you discover that you energy limits do actually prevent you from doing Thing, even in the tiny unit, which is a sad thing to learn, but at least you tried and now you know. (Maybe you can find a smaller unit of Thing that does work.) But at least you’ve taken a step, which is more than you ever did when you were trying to divine the difference between Can’t and Don’t Wanna.

      I know the advice about “break it down into smaller steps” advice is cliched, but it’s one of those things that’s really cliched for a reason: it is how most achievement is done. You don’t know which is Can’t and which is Scared Don’t Wanna until you try.

  30. You say your parents don’t push enough. It seems to me they are pushing in the most gentle and caring way they can. They want you to get support so you can one day (soon) live on your own and support yourself. They are probably worrying what will happen when they get older, as it is already hard on them now.

    As others have commented, get support, get all the resources you can, then do something you feel you *can* do instead of pushing yourself to be “normal” (whatever that is) and achieve something that will only make you feel inferior. Set small goals. Goals that only mean an hour, then two, then a few days. With every achieved goal you’ll get to know your limits and find self-esteem. And that all it needs.

  31. LW,

    I’m an artsy type person who also suffers from fatigue due to a chilhood illness. I’ve found crafts like knitting really help on days I can’t move. It’s a nice creative activity that, unlike say painting, has little set up and mess. You can do it in bed easily. It’s nice for those days where you have 0 energy and you can’t get out of bed as the product is tangible, even if it’s just a shapeless blob.

    I’m sorry you’re going through this.


  32. (fwiw I’m unemployed, adhd, depression/anxiety, 31 y/o living with spouse)

    The time for being “pushed” is past, Letter Writer, and it will never return. And trust me that is an excellent thing. The person or people doing the pushing? They don’t know when is enough. They don’t know when is too much. They never will.

    You will. It’s hard. It’s so hard. I don’t always get it right but I am learning and you are learning.

    One of the most valuable things I have ever done is to “give up”. Wipe the slate of expectations clear for yourself. Now. What *can* you do?

    You say you oversleep every day and nap for several hours in the afternoon. What if, for now, you schedule that in? Block that in in your mental daily calendar. Set yourself a regular wake-up alarm which is around the time you seem to naturally crawl out of bed after sleeping through or snoozing all your “should” alarms. Stick to *that* one. Schedule a 2 hour afternoon nap every afternoon and stick to the 2 hour nap.

    Schedule a full-on rest day after an outing. Work out a schedule which fits what you are doing NOW and be strict with THAT.

    Practice following your own rules: once you can follow your own schedule and stick to it and get up when your alarms go off and rest when your schedule says “rest” and play when your schedule says “play”…. well then you can try, gently at first, to tighten those rules. Try pushing yourself. Get up half an hour earlier every day for a week (heck, even people who don’t have chronic pain and fatigue find it difficult to get up earlier than “normal” so give yourself a few days to get used to it!). How do you feel? Does your afternoon nap stretch out even longer? If so – maybe you really do need that extra half-hour. That’s okay!

    Try (I know it’s hard) to stop comparing yourself to the way you used to be or the way your parents are or the way you think you “should” be. Try and work out what you really need and work with that.

    Good luck!

  33. I like a whole lot of the Captain’s advice, LW, and, as I also have an Asperger’s diagnosis, a few other things that have also helped me are:

    -Make sure you’re getting enough sunlight. Getting up in the morning and from naps can be a huge issue for me, too, both for “hard to transition” reasons associated with autism, and because my room doesn’t get enough sunlight in the morning. If you don’t have one and have space for one, consider getting a light box. Being exposed to morning light is the single biggest factor affecting everything about how I feel and how focused and productive I am when I wake up in the morning.

    -Something you HAVE to do. It doesn’t have to be a job, but it should be a real commitment, that will serve as an overwhelming provocation to getting out of bed/out of the house. I realized this when I noticed that somehow, I got far *less* done on days that I had all to myself than on days when I had to be somewhere by a certain time, because that expanse of unstructured time invited procrastination and dawdling. Any kind of “I actually have to be there” commitment might give some minimal structure to your time and make it easier to break down the rest into “I can get these specific things done in this number of hours that I have free before I have to go somewhere.”

    -List-making. I keep a list of all the things I need to get done in the middle-to-long term…and break those things down into smaller steps if necessary (usually), and make a list every night of what I need/want to get done the next day. If you have to start *really small* just to be able to check some things off a list, that’s okay…some days mine start with “Get up! Make tea! Eat breakfast! Go for a walk!” It’ll give you some momentum for bigger things. And a list of things I need/want to write. The things I want to write for my own blog, the things I promised I’d write for another blog, letters and thank-you notes, resume updates, whatever. Checking things off lists is satisfying, and you’re likely to start doing stuff, even relatively minor things, to get to check a thing off a list.

    -If you can drink coffee…coffee is good for executive functioning.

      1. Caffeine in general is. Yes, this is widely reported among the autistic people I know.

        And ibuprofen is good for sensory overload.

        There’s, like, a LOT that the medical/mental health professions don’t know about actually being autistic.

      2. I have ADHD, which essentially is a disorder of executive function, and which is treated by prescription stimulants. I know other people with ADHD who self-medicate with coffee. For totally neurotypical people, caffeine just makes them wired, but depending on your neuroatypicality, it’s possible that stimulants can slow you down and make you calmer and less scattered. There are people with ADHD so bad they process cocaine as a downer. It really is a “which way is your brain wired?” thing.

        1. My little brother is dyslexic and swore as a student that a weak joint helped his head slow down and process information better. Fortunately he managed to find a job that is mostly physical doing stuff and someone else to type up his reports, as marijuana and working on construction sites really wouldn’t have been a good combination!

      3. Yup! Many prescription ADHD drugs are stimulants, and otc ones like caffeine work on the same principle.

  34. I just wanted to mention that hitREC●rd (hitrecord.org) is a good collaborative community to get involved in for creative and artsy people. I think it requires some social interaction as well, which can get tiresome, but also might help with isolation if you haven’t done much social stuff in a while. They have a lot of short projects and drawing projects!

  35. Volunteering helped me figure out some of this for myself. Volunteer commitments are still a commitment, but they can vary so much in their scope and nature. I was able to get volunteer gigs doing stuff that I loved in contexts that worked with rather than against my physical limitations.

    This was a really great way to find out that I need certain accommodations in a work place, that I don’t actually have any interest in teaching, etc. Plus if you don’t have much recent work history, it is something you can put on a resume if it turns out that paid work is what you want. If paid work isn’t for you right now, it is a valuable way to stay connected to your community and keep using your skills. (This was so important to me when I was feeling really isolated.)

    I am doing paid work now and one of the things that has surprised me is how much my stamina for this kind of work has increased over time. Volunteering can be a lower risk way to see if that will happen for you. If you commit to one hour a week as a volunteer, it is easier to offer to stay late and help with something that needs doing and see how it works for you without committing long term to more hours.

    I also like the routine and sense of purpose. Plus it’s nice to have a distraction.

    Of course this is all my own experience and your circumstances may mean that this isn’t the right option for you. That is cool. Do what helps you feel best.

    Good luck, LW. It’s a tough thing to figure out and I hope you can find your answers.

  36. One more thing–your Asperger’s diagnosis sounds fairly recent?

    You might need to assess whether something you’ve been doing your entire life is, consciously or subconsciously, expending a lot of energy to “pass” as normal or to suppress your natural body language or expose yourself to more sensory stress than is good for you. If so…doing those things is *incredibly* energy-intensive and draining, and a lot of autistic people suffer breakdowns or burnouts from doing it, sometimes even younger than you.

    And if you can…gently, gradually, non-judgmentally…allow yourself to stop that…it would probably have positive effects on your sleep quality and overall health.

    1. Yes. Trying to be ‘normal’ is exhausting.
      It took me a long time to realize that while I was hyper-critical of myself for being ‘weird’, nobody else was looking that hard.

      When I respond to something in a way that people weren’t expecting, I just smile and laugh. Most people are willing to forgive any awkwardness with the assumption that I was trying to make a joke that didn’t land and move on with the conversation.

      With friends and close acquaintances, I’ll laugh, then strip down what I meant to say to it’s most basic form, and say it again being sure to include the parts I left in my head before. This has the effect of making me seem earnest and trustworthy, and is great for communications at work too.

      Spouse will ask me what I meant, give me time to formulate it, and be patient while i process out loud until I find the best way to communicate it with nuance, so he gets the most honest version of me.

  37. Dear Exhausted,

    Your letter was one I could really relate to, in fact, feel that I could have written 20 years ago. And I want to acknowledge how unfair it is to be chronically ill so young, right when you might expect to be having fun doing stuff or getting a good handle on your game. But that isn’t what life hands us sometimes, and boy, does it ever suck.

    Please be very nice to yourself.

    I had FM, severely disabling FM from my late 20’s to mid 30’s. I could not blow dry my hair I was so tired. That tired was not in my head, regardless of the fact that there was no real reason other than exhaustion and pain. Those are reasons!

    It sounds to me like you are on the right track with yoga, and the Captain’s suggestions about a therapist who does help you is spot on. Getting on disability is something that can really help, and bringing money in regardless of if it is from a traditional job or from federal insurance is empowering and does wonders for how a person feels.

    So, at 28, I was bedridden, full of pain, fatigue, anxiety and grief, doing not much but coping with pain. After five years, doctors pretty much chalked me up to Not Getting Better. But you know what? I did. And have since done lots of fun things. I moved to Spain and to Mexico. I learned acting. Got a teaching certificate. Learned Spanish. Sold my paintings. I now have two businesses. No one, not even me, thought I could do anything like that. But it happened. Very very slowly. And I look back two decades later and see that it happened because of that ten minutes of yoga. (Ok, for me, it was 5 minutes of walking, which over a few years became 30…which over a few years became an hour.)

    The hard part of having this kind of chronic condition, imo, is that the therapies are so individual. What works for you? For me, meds made it worse. That is not the case for everyone. Acupuncture helped a lot. Diet also. But to really say what healed me? That 5 minutes of walking. The change was so, so slow that it was imperceptible. But I have to tell you, the first time I spent an hour walking around Madrid (yay! Disability insurance! Couldn’t do much of anything, so thought I might as well do nothing in a place where i could passively grow, by change of environment) was a magical Wow I Am Able To Walk Around !! Moment.

    Sure, my parents didn’t want me to go. They wanted to set me up in a rocker on the patio for the rest of my life and make sure I was ok. But that was not very interesting…

    Exhausted, you sounds like a cool, creative person. So right now, while you are in such pain, I do encourage you to not beat yourself up for not fitting in with the So What Do You Do crowd and just relax into being your own unique and awkward self on a skybridge to your very own brand of awesome.

  38. My hopefully-not-too-long list of suggestions:

    1. If your current therapy/medication regimen isn’t making you feel better, CHANGE IT. I spent far too long on the wrong medication until I got on one that fixed my jerkbrain but good. Don’t be afraid to tell your therapist you need to see someone else; they’re trained to help you with that. The same goes for whatever medication you may be on for pain/fatigue management. This feeling of being tired and overwhelmed may be medically treatable, or it may even be caused by a medication you’re currently taking. Take a serious look at changing up your treatments.

    2. Get out of the house. It’s hard to feel energized if you’re sitting still indoors all day, and ten minutes of yoga isn’t going to cut it. Your physical disabilities limit what you can do, but even a walk around the block–slowly if you have pain issues–will get your blood circulating. Get fresh air and sunshine. I work mostly from home, and it took me a while to learn that I need to get out of the house every day or I’ll get cabin fever. Go to a park, a coffee shop, anywhere that’s not your bedroom.

    3. Find your limits. What’s the line between “can’t” and “don’t wanna”? No one can draw that line for you. All the disabilities you’ve been diagnosed with have extreme levels of variation, so only you can determine if you’re “can’t hold down a job” depressive or “okay with the right treatments” depressive. And the only way you can make that call is by testing yourself. Don’t beat yourself up for needing rest or extra time to finish tasks. Work out what you need, work it into your life, and keep going. Ideally, you want to carve out a life that makes room for your needs but still allows you to get shit done. This is both possible and worth it.

    4. Get shit done. I’m going to be blunt here: it’s hard to feel good about yourself if you’re not doing good, and right now it sounds like you aren’t doing anything that makes you feel positive, productive, and proud. Ease back into doing stuff. Don’t worry about long-term goals for now. Focus on getting one thing done every day.

    The Captain talked a lot about creating a schedule, and I couldn’t agree more. Depressed and directionless minds benefit from structure. Keep a to-do list of achievable goals, even if it means starting small (“out of bed by dinnertime: check”). Schedule activities. Allow me to humbly suggest some:

    — Exercise/fresh air/change of scene. As detailed above.
    — Some form of productive self-care and/or helping out around the house. Someone above suggested cooking, one of my personal favorites. Or it could be cleaning, or gardening, or knitting. Preferably something with a low-impact physical component and visible end results.
    — Writing time. For this I have specific instructions. Set aside a period of time each day–start with 20 minutes and work your way up to an hour–for writing. There are a couple of ways to do it. Lynda Barry, the great cartoonist, advises that you write steadily the entire time without stopping. Daniel Pinkwater, the great writer, advises sitting in front of a blank page or computer monitor until inspiration strikes. No music, no TV, no Internet. Edit later. This is the only known cure for writer’s block and nine-tenths of the secret to being a successful writer.
    — Drawing time. Look into drawing classes and sketch groups in your area. Drawing is a good social activity, so this will double as a way to get out of the house and meet people.
    — Volunteer work. You worry about your ability to hold down a job, and you’re fortunate enough that you don’t have to support yourself financially at the moment. May I suggest volunteering your time to a worthy/interesting cause? Unlike with a paid job, you can set your own hours and decide how much or little to do. I owe almost everything good in my life to volunteering at a museum. No joke.
    — Wearing pants. Putting on pants every day is the key to being productively self-employed. If you can manage that, you’re halfway there.

    1. I will disagree with your pooint on ‘writing time’. ‘Writer’s block’ (as opposed to being stuck’ is an anxiety issue: when you stare at the page and you *can’t write* (and cry and have a panic attack at the thought of even going there and…) – forcing yourself to do it might bring out some words, but it’s not going to help you associate writing with fun again, and it’s not going to keep you writing for the long run.

      The less you work at reducing anxiety, if anxiety is what blocks you, the longer it will take you to go back to this thing you once used to love. It took me five years to rediscover that yes, I really used to love coding *and it can still be fun.*

      If you can look at a blank page and be inspired by it, good for you. But the only time I look at a blank page and write is when my head is overflowing with words already; otherwise it won’t work. I spin scenarios in my head (and depression can seriously interfere with that!) when I am walking, swimming, driving or cycling-in-safe-places – and when playing tetris-style games. Give me a game where I’m moving little tiles or boxes around and the busy part of my brain gets bypassed and I get into ‘the zone’ much better, so any time you see me playing Bejewelled and suddenly stop to scribble a few lines you are seeing me _work_, and if I stopped playing around I’d be less productive, not more.

      So there’s no ‘one size fits all’ and the LW needs to work out what’s working for _them_. Here ‘follow your bliss’ is not a bad idea: if something makes you feel like shit and makes you feel worse, don’t do it. If it makes you feel inspired, do more of it. This doesn’t mean you should avoid _hard_ stuff: but you can tackle hard tasks and love it or mindnumbingly easy ones and feel no sense of achievement at all because they’re too easy or the wrong kind of task.

    2. I just want to second the volunteer work. It is less pressure and less structured than a job, and comes with less expectations. However, it also can give you job skills and references for later, introduce you to new people who have similar interests as you (without a lot of social pressure), and build confidence as you gain new skills.
      Like the previous poster I owe a lot to volunteering at a museum. My experience there got me a job and shaped the direction of my education. I met great people, but since it was a professional environment I didn’t feel like I had to socially interact with them more than minimally unless I felt like it. Because I was there once a week I could build connections at my own pace. I was going through a period of depression at the time, but volunteering was the highlight of every week. It gave structure to my day and I always ended the day having learned something new and feeling like I accomplished something.

  39. I’m constantly tired and achy, even if I haven’t done anything, largely because of physical issues and chronic pain, so I know how you feel there. I sometimes feel like I shouldn’t be working a job where I am around people, and sometimes feel that I can’t and constantly worry about getting fired, because of these issues and a few others. The key thing to keep in mind here is: A. You are not alone. B. You have the support of people that love you, and C. As the captain put it, be kind to yourself. Don’t push yourself too far – you could end up hurting yourself, physically or emotionally, and you don’t want to deal with that. Keeping up a routine is a good thing – I try to get up at the same time every day, go to bed at the same time, and do a little bit of writing or something that makes me feel productive. If I just feel like I absolutely can’t, I usually have a nice cup of tea and read. Still feels productive, but it’s not something strenuous and it helps me relax and be calm. Find something that helps you be calm and feel good! ASMR videos, if they help you (I highly recommend them), rain sounds or something like that can be nice background noise, or something to focus on if you need it.

    Take care of yourself, first and foremost.

  40. Please be very careful about setting up a savings account. It can be used against you when dealing with disability-generated income.

  41. I have two suggestions for the LW. I’m married to someone with chronic pain and fatigue, so these come from them. First of all, there is fairly recent research that shows that ritalin or other drugs that treat ADD/ADHD can help alleviate chronic fatigue and pain. My partner has been trying out ritalin for the past few months, and it’s dramatically reduced the pain and the fatigue so they can actually function for a couple of hours a day (before the ritalin, basically, no). It’s also nice because it’s a medication in which they can take more if needed, to help them get through a longish day, but less on regular days.

    I don’t know how ritalin might conflict or work with your personal situation, but it might be worth asking your doc about it.

    My second suggestion is really an extension of the Captain’s excellent advice. If you ever attend a time-management seminar, they talk about ways to accomplish things, and how to avoid procrastination. One of the best suggestions I ever came out of such a seminar was if I wanted to accomplish something, (like say, writing a story or doing some drawing), was to do it for 20 minutes a day. It didn’t matter how much got done during that 20 minutes, but that I focused on it for 20 minutes. You can go over 20 minutes, and that 20 minutes can grow to longer. But I wanted to emphasize, to the part of your jerkbrain that may feel 20 minutes isn’t enough or why can’t you work longer or any of that, that this is a technique that is taught to people who are healthy and aiming to be conventionally successful (whatever that means), and they still may struggle with it.

    Jedi hugs.

  42. I can’t urge this strongly enough: GET TESTED FOR A SLEEP DISORDER. Sleep apnea is incredibly common. You can have it whether or not you are overweight, and you can have it even if you are absolutely convinced you sleep soundly. (Humans are very prone to sleep apnea due to the structure of our windpipe that allows speech. It’s kind of like bipedalism being so bad for our lower backs.) If you do have apnea, THIS IS SOMETHING THAT CAN BE FIXED. Getting used to sleeping with a CPAP machine is a bit awkward, but the feeling when that perpetual fog begins to lift is indescribable.

    1. My dad has sleep apnea (he’s not overweight or underweight; I guess he’s weight?) and he got a CPAP at age 60 and he feels so much better. He was always tired, though energetic, beforehand, and now he’s still energetic but not tired.

      But yeah, he’s been the same weight since reaching adulthood and my mom says he’s had it at least since they’ve been married.

    2. Following up on that, I have sleep apnea and resisted getting a formal evaluation or CPAP machine for sometime because 1) I had been oversold on A) the connection between weight and sleep apnea and B) the feasibility of losing large amounts of weight with reasonable measures, and 2) I expected to have certain specific problems with it, which I did in fact have and needed corrected for as follows. LW or other readers, if you are diagnosed with sleep apnea, there are two things you almost certainly will want to do:

      1) request that the doctor write you a prescription explicitly specifying “patient’s choice” for the type of mask to be used, unless there is a specific medical reason why only a certain design will work well for you. There are several, with important differences. For example: I have narrow sinuses and a great deal of difficulty getting enough air breathing only through my nose when awake, and the medical supply company my insurance contracts with obstinately interpreted my doctor’s original broad recommendation that I be given a mask with a “gel cushion” as only permitting a specific model…which only fit over the nose. I explained the obvious problems with this, but the staff were adamant that the facility would LOSE ITS LICENSE IF THEY DIDN’T FOLLOW THE “RESTRICTION” they imagined in my prescription. By the time I was able to get through to my doctor and convey his “Wait, WTF?” to them (which produced quite a change of tone, let me tell you….), my insurance had insisted I try the mask for a week to see if I could make it work (I couldn’t) before I could replace it. Needless to say, it didn’t and I finally got a full face mask, which worked “okay” but was designed in a way such that it pressed/rubbed on the bridge of my nose in a way that gradually produced an inflamed sore there (I still have a scar, several years later), and I had to have another model switch.

      Which leads to 1a: as an aside, my admittedly limited experience with medical supply companies (specifically, with Apria) is that they are not accustomed to patients who are informed about, think critically about, or advocate assertively for their wishes and interests with regard to, their conditions or treatment options. I don’t want to discourage anyone from seeking appropriate treatment for medical conditions, but it’s worth being aware of and prepared for this.

      2) There are two specific features not all CPAP machines have, for no reason I can imagine, but which I would expect to be desirable for most users and which you will probably want to at least bring up with your prescriber. The first is a “ramp” feature, which gradually elevates the pressure over a period of a few minutes, up to the working pressure; this helps you fall asleep while feeling like you’re breathing “normally.” The second is an auto-adjustment feature which momentarily reduces the input pressure when the machine detects you exhaling, making it easier to breathe out normally; I found I slept much better after I had my CPAP machine swapped for one with this feature, since otherwise it felt like my breath was “trapped in my lungs.” The usual designations are something like “Auto-Flex” or “APAP”; your provider should have more information about this.

      1. The difference between a traditional cpap and what you are describing, where the machine only exerts pressure on inhale, is an order of magnitude of money. The second is actually called a bipap, as it has two pressure levels, and most insurance companies require that a traditional cpap be attempted for a period of time before a bipap can be considered, which occasionally requires another sleep study.

        … I do billing for a DME company, sorry. It’s unfortunate that we have to work with the insurance companies’ often labyrinthine and nonsensical rules, but those puppies run a year’s rent.

    3. Yes, PLEASE get tested for sleep apnea. I had it for 2 or 3 years without realizing it — my descent into exhaustion was so slow it felt normal. Also, I had this idea that a) sleep apnea was like a character weakness and b) the treatments for it didn’t work anyway.
      What changed my mind was an intern at work who had to finish her internship early because she needed sleep apnea treatment. She was so accomplished and confident — it hit me that it was “okay” to have sleep apnea, and that treatment was possible.
      When I was diagnosed, I was told that every two minutes during sleep, I stopped breathing for 10 seconds or more. No wonder I was always tired! The CPAP machine is wonderful and really saved me — I’d forgotten what it felt like to have energy again.

      Regarding fibromyalgia, I had that in my 20s and then it went away. Another poster here had the same experience. So it might also go away for you, too. One thing that helped me a lot back then was those HTP-5 supplements (or GABA or tryptophan). And now there are lots of FM sites that have great info on treatments.

      Best wishes to you, and feel better soon.

  43. LW, I’m so sorry that you’re having a hard time at the moment. You have a lot of things to deal with, so it’s no wonder that you are finding things hard. But I know how a situation like yours can make you feel hopeless – I’ve felt a similar way. I am also 25, with depression/anxiety and some degree of chronic fatigue. So far, this year has been going well for me, last year was very difficult and involved a couple of stays in a mental hospital. I’m partway through a degree which feels like it has been dragging on for eons. (Good on you for getting your BA! That’s a real achievement). One of the hardest things for me to deal with has been the relentless guilt and high standards that my brain insists on imposing on me. I feel like I should be working, should not be relying on my parents for money, that I’m not contributing to society, that I’m not fulfilling my potential…. Lots of critical thoughts.

    There are a couple of things that have helped me in this area. Firstly, talking to other people who are in a similar situation can provide some perspective. I went to a group therapy program for a few months, but there may be other groups in your area, or on the internet. I found that this helped me change my perspective on what I was dealing with. With my own issues, I would often dismiss them as something minor, or a personal weakness I should be able to overcome. But if I heard someone else talking about their own life, I could feel compassion, and understanding that this was a real problem that was hard to deal with. I think this has been the thing that has most helped me develop kindness to myself.
    The other thing I have found helpful is a therapist whom you connect with. I changed therapists, after spending some time with one who was very nice but just not really helping me. I didn’t realise what a difference it could make to really click with a therapist, to talk to someone who gets how my mind works. I know that there are barriers to changing therapists – finding someone good, asking parents to pay for appointments, guilt about leaving your old therapist – but if this is something that you could achieve, I think it could really make a difference. Even if there are lots of steps and it all seems like too much trouble (a thought I often have), just take it a little bit a a time.

    There are plenty of other great suggestions in the post and the comments. My only other piece advice would be to take things slowly. Maybe try one new thing for a week, and see how it goes, before adding another. And best of luck!

  44. I am sending you Jedi hugs, LW, and the Captain’s advice is excellent, as always. I see my younger self in your letter, and hopefully some of the things I’ve learned may help you.

    I was born with cerebral palsy on the right side of my body (fairly mild and manageable on its own). I went to university and worked throughout, and then I went to grad school overseas. It was awesome, and life was proceeding according to my very carefully-laid plan! I returned home, ready to go back to my old job while I figured out what to do with two English degrees, and feeling pretty chuffed. But a week after I submitted my thesis, I went for a walk to the supermarket and got hit by a car. (On my left side, just to even things out.)

    The car accident knocked me out flat. My injuries triggered my body’s inherent cerebral palsy responses, and everything became a giant feedback loop of pain. I couldn’t sleep, and I became depressed, especially as weeks turned into months and I still wasn’t “better.” I had to stay with my parents, which was challenging for everyone. I had no energy and no will, and it took me a long time to adjust to what my new life would become.

    Now, almost nine years later, I have a place of my own, a job, cats, and I am happy, even with the chronic pain. I have a cocktail of medications that works for me, a team of doctors and therapists, and a massage therapist that all help keep me on my feet. Most of all, I’ve finally been able to forgive my body for not being as “functional” as I used to think it should be. That’s a really hard lesson, and it took me years to accept my new “normal.” But now I’ve even come to think of pain flare-ups as my body’s way of warning me that I’m doing too much…and I better darn well listen to it and rest!

    As others have said, finding a therapist that fits is a godsend. Yoga is great, too, even for ten minutes a day. For me, yoga doesn’t always feel like it’s “doing” something tangible, especially since some days I can’t do anything beyond putting my legs up against the wall, or rest in child pose. Not exactly an abs-of-steel workout! But it’s become a time and a space where I can just relax, and listen to what my body’s telling me. I’ve tried swimming, too, and it was great for no-impact movement, but I’ve never really been keen in the water, so it was a bit of a chore.

    Getting outside every day, whether a short walk around the block or just sitting outside on the patio, really helped me. I made an effort to get out of my pyjamas each day (even if I was just changing into yoga pants!). Volunteering can be a great way to get yourself out the door – I found a theatre company that I loved and started volunteering there about 9 months after my accident, and I continued for three years. When I found a part-time job I had to ease out of volunteering, but it was such an important part of my recovery. I made new friends in a low-pressure environment and had a lot of fun. It made me feel part of the world again.

    I also relied a lot on my online friendships. They kept me feeling social even when I couldn’t get out of bed. I felt isolated from a few of my old friends, who couldn’t figure out why I couldn’t just snap out of it and go zip-lining with them on a weekend getaway. But I also gained some amazing new friends, online and in real life, who understood my new reality and were there for both a good cry and a good laugh.

    I also want to sing the praises of a good nap. They are a huge part of my self-care. Naps are important scheduled events in my life! Sleep is when your body heals itself, mentally and physically. Barring depression-related oversleeping or other medical causes, don’t beat yourself up for napping. In the first couple of years after my accident, one active day could easily knock me out for 3 days. Gradually, after another few years, I could recover from a busy day in 2 days. And then I also got better at gauging the level of activity my body could handle, so I could balance things a little and not get too burned out…or at the very least, not be surprised when I burned out after a crazy day! These days, I’ve got a pretty good rhythm going, with naps and down-time built into my days off. If I work or do too much, I can expect my body to protest, but the recovery time is much shorter than it used to be, and I don’t resent the pain the way I used to.

    Life isn’t kittens and rainbows (though there are kittens!), but I’ve learned to work with what I have and let the rest go. Expectations – our own, our loved ones’, societal – can be so hard to overcome. Be gentle with yourself, take baby steps, and reward yourself for your accomplishments, no matter how small. They build up, and and you will find your own path.

    I wish you all the best.

  45. My brother lived in circumstances similar to LW’s for almost a decade. Couldn’t work, couldn’t get up in the mornings, was always tired. There was a lot of discussion about whether he couldn’t or didn’t want to “do better” etc. and it was very hard for him. Sadly, at a certain point it was kind of accepted that this was just how things were with him. Finally it turned out he had always been wrongly diagnosed, he got on the right sort of medication, and his life got immensely better. It’s almost like night and day. He’s also working now. (As an aside, getting the right treatment was a direct consequence of getting disability benefits because in my country the disability benefits institution makes a big effort to get young people on disability benefits back into the workforce – it’s bad for many people who are on the benefits and who are truly unable to work because of the added pressure, but for my brother it was a blessing). Obviously I’m not saying this will happen for LW. But there may be much more hope for improvement than the treatment she’s been getting until now suggests. After seeing my brother improve I want to stress that sometimes the right solution just hasn’t be found yet. Definitely get a new therapist & try out new medication if that’s suggested. It may be hard to treat the allergies and the fibromyalgia, but a lot of the issues might come from the depression and the anxiety and they can probably be treated way better than they are now. Keeping a daily structure, doing yoga, catching up with friends, and doing creative work will all be a million times easier if the underlying condition is treated correctly. So if there’s any doubt about that being the case, work on that (maybe with the help of the parents because of course getting treatment is itself exhausting).

  46. Just an add-on to the comments about seeking further medical help. If a doctor or nurse seems sympathetic, grab the conversational space as much as you can to tell them about your symptoms. When and under what circumstances do problems flare up? If you get a medical professional who is prepared to listen, give them as much detail as you can. Sometimes they will then hit on something that turns out to be life-changing. It’s often hard to talk about oneself in such detail, but it can be worth it – even to preparing scripts or written prompts for yourself beforehand.

  47. In terms of employment, if you do decide you want to go in that direction, I’d like to add my vote for volunteering, as well as temp work. Both have the definite advantage for someone who’s not sure where their limits are in that you can just do them for a little while and that’s a completely expected thing to do. Some volunteer gigs certainly have more of a long-term commitment, but there are plenty of places that expect people to show up once, or periodically when they have time.

    Same with temp work, which can be more stressful because things are different all the time, but can also be really reassuring since if you don’t like a particular placement, you’re only there for a little while. And if you try it for a few months and aren’t up to it or it just isn’t for you, you can just tell the agency you’re not looking for temp work anymore, no need to say why if you don’t want to, and it’s a nice little line on your resume.

    1. In the US at least, you are allowed to work a small number of hours legally while receiving benefits, the amount depends on the type of assistance you are receiving.

      I did short term-temping during this time, assignments of 1-3 days. Most workers are looking for long-term or temp-to-perm assignments, so you can create a niche for yourself as someone they can call at 8 in the morning who is willing to be there by 9.

      You either say no, and they call the next person on their list, or you brush your teeth, slap on deodorant, and put on a blouse and slacks.
      You can bring a project on a thumb drive, or just play Flappy Bird in between signing for deliveries and making coffee. No one expects you to do anything important, just the random little things that person who is sick usually does.

      After you’ve proven that you aren’t going to steal things, they give you the assignments that don’t require any human interaction. These are great!
      You can file things or enter data, while taking breaks to argue with yourself or stare at nothing.
      Again these jobs aren’t crucial, so it’s more about the appearance of holding down the fort. Because the the expectations were so low, things like knowing how to file both alphabetically and numerically got rave reviews and profuse thanks from my temporary employers, which was a nice mental boost as well.

  48. On the subject of baby steps, structure, and learning new things: I highly recommend Superbetter.com as a way to make getting things done *fun* and remind you to take care of yourself. It helped me a lot when I was underemployed and lonely last summer, especially some of their mental health tracks (the Mood Elevator, ground floor, is the best!). There’s just something so much better about having your accomplishments reaffirmed by a congratulatory message and an increasing status bar! Like, to some people it might seem stupid, but it seriously lifted my mood so much to tick off even things like “Get out of bed.”
    The site didn’t continue to work for me long-term (after I suddenly had TOO MUCH work then all the cheerful reminders to email a friend! listen to music! volunteer! exercise for five minutes! just became additional stressful things to worry about cramming into my too-full schedule, plus the gamification stopped being so fun because as a game it’s a bit *too* easy, with no real challenge or penalties if you stop making progress) but for a few weeks it was REALLY helpful. (I use HabitRPG now, we’ll see if it follows the same pattern.)

    And for getting up in the morning, the only thing that has ever really worked for me for more than a couple of days at a time was having something I HAD to be up for. :-/ And being really good/consistent about getting to bed at night (became WAY easier when I started using melatonin and no longer had to dread insomnia attacks) and giving myself some kind of reward for getting out of bed (again, Superbetter/HabitRPG is what works for me; I also had a friend texting me to keep me accountable for a while and that was great) helps me not mess up my schedule too much on my unstructured days.

  49. De-lurking to say that I really feel for you, LW. In terms of energy and pain levels (and this will be brief because I have those same problems) I spent a week making a chart of what I’d done each day. Then I filled in, in traffic light colours, how I felt the next day, in columns marked ‘pain’, ‘exhaustion’ ‘brain fog’ and ‘mood’. The aim was to get mostly orange or green; I didn’t do too well at that! But it gave me a better idea of what was sustainable.
    As for the depression and social anxiety, I’ve found the only solution is to do stuff. It’s really hard. But if there’s something I really want to do, I can make myself do it; for instance, next week I’m going on an overnight sailing trip, and the week after I’m going to learn basic wrought-iron work. Then this gives me something to talk about with other people; once I’ve recovered from the effort, that is!
    Good luck, LW.

  50. LW,

    I can really relate to most of what you wrote in your letter. I’ve been dealing with a lot of similar issues for the past years. Depression, PTSD, and panic disorder make it hard for me to be able to apply for jobs and the chronic pain and constant fatigue from fibromyalgia as well as some other medical issues makes me unable to function well enough to work anyway. I live in the US and I’ve been working my way through the process of applying for Social Security Disability benefits since early 2012 (I had to reapply after my initial denial because I was on an inpatient psychiatric unit when I tried to submit the form to appeal their decision and missed the 60-day cut off ). If you’re in the US and you think there’s any chance you might need or want to apply for benefits, I’d recommend applying as soon as you’re able because it’s a really drawn out process involving months to more than a year of waiting. I was denied both times I applied, my appeal was denied so now I’m waiting for a court date next month to go before a judge who will rule whether I am disabled enough that I can’t work.

    There have definitely been some things that I’ve figured out that make my life much more manageable and make me happier overall. They might not make my life turn into what I might have pictured it would be at 30, but I’ve been working a lot on radical acceptance and I’m actually feeling pretty satisfied with the improvements I’ve found over the past few months. The biggest things for me involve stability and some type of structure. Out of all of my issues, my depression is the thing that tends to throw me off balance the most. Pain, fatigue and anxiety are all awful, but if I can’t find the will to make myself get out of bed in the morning or if I don’t care about being here, for me that’s a much bigger problem. I’m pretty medication resistant as far as depression goes, so structure for me is huge. I try to get up around the same time every day. I set an alarm to wake up, though I do cut myself some slack if I’m having a really hard time sleeping the night before, within reason. 9:00 is usually my cut-off for sleeping in. I have to shower, I have to put on non-pajama clothing and I have to eat breakfast first thing. After that, my day is more flexible, as long as I eat the rest of my meals and snacks. The other really key piece for me though is that I have to leave the house every single day. It can be just going to a doctor’s appointment, or it can be just taking a short walk but I have to leave my apartment long enough that I have to lock the door behind me and leave. The reason is that when I’m depressed and anxious, I stop leaving my house. At first it’s just a day here and there, but given enough time, I stop going out entirely. When I was hospitalized just before Christmas, the night I left for the hospital was the first time I had gone outside in almost three weeks. I can’t really know when I’m going to start being afraid to go outside, so the only way I can really fight this is to be diligent about leaving every day.

    I saw a therapist for a year after I moved to the area that I’m living now and felt like I wasn’t really getting anything out of it. Then he wound up changing to a different location that was not convenient for me and I decided to look for someone else. I wound up going through three more therapists in about six months before finding the person I’m with now. It was frustrating and it felt really awkward to start seeing someone and then have to tell them that I didn’t think that I wanted to continue seeing them, but in the long term it was a really good decision for me. The process certainly sucked, but finally having found someone who I fit well with and who has experience helping people through some of the issues I need help with who is also someone I feel comfortable talking with was well worth it.

    As far as figuring out scared/vs unable? So, this is going to possibly sound really over simplified, but one of the things I tend to do when I can’t tell the difference over whether I’m scared to try something or whether I’m resisting trying something because I know I actually can’t handle it is to make a pros/cons list for each. Sometimes writing it out like this makes it really clear to me that I’m holding myself back because I feel like I’ve failed at so many things that if I try something new I’m just going to fail again and get upset with myself and sometimes it’s the opposite. Also, if I can identify what about something is making me anxious or afraid of it, sometimes that’s really helpful too, though I tend to have less success with that on my own.

  51. Hi Exhausted,

    I’m so sorry you’re going through all of this. Two things I pinged in on: multiple food allergies and poor sleep.

    Re: multiple food allergies….oh, do I ever feel your pain, here! There is a cookbook floating around teh interwebz called The Autoimmune Paleo Cookbook. The recipes inside are free of most of the main food baddies….soy, dairy, peanuts, treenuts (although there is a lot of coconut), seeds, wheat, gluten, nightshade vegetables, and eggs. There are some recipes featuring fish and shellfish, but they are in a dedicated section. If you’re having trouble finding good things to eat, it may help. It helped me quite a lot. In the situation you are in right now, knowing how to cook good healthful food that won’t make you sicker may help you feel like you are more in control of your life.

    Re: poor sleep…..it’s been clinically proven that disrupted sleep can be a trigger for depression, sleep deprivation is a trigger for anxiety, and that lack of adequate REM sleep is a major underlying cause for fibromyalgia.

    “Research also shows that some form of sleep disruption is present in nearly all psychiatric disorders. Studies also show that people with chronic insomnia are at high risk of developing an anxiety disorder.” https://www.adaa.org/understanding-anxiety/related-illnesses/sleep-disorders

    So if you have NOT asked your physician for a sleep study, that could be another place to look. You may have something going on in your sleep that is treatable, either by medication, cognitive behavioural therapy, physical interventions, or some combination of the above. It won’t be a magic thing that fixes all of your problems, but if you can go from (anxiety + depression + fatigue + chronic pain + exhaustion +…) to (less fatigue + chronic pain + mild depression that I can deal with), that’s a big difference in quality of life.

    Best of luck.

  52. I have chronic fatigue and am bipolar. (And they didn’t catch that it was bipolar for about 10 years, so I was on regular antidepressants, which can actually make things worse.)

    I think the main issue here is the word “force.” You use it a lot, and that’s a bad precedent. First of all, mindset is a big deal. I used to say I was too lazy to do things. A therapist got me to stop saying that and to say “tired” instead. I was surprised what a difference it made. I stopped feeling so bad about it, which made it easier to cope with.

    So I’d encourage you to stop thinking about it as forcing yourself. Think of it as whether you have the energy. If you start looking at it differently, you’ll find it’s a little easier to consider. And I know how hippy-dippy that sounds. But trust me, it does make a difference.

    Another thing is that your parents *shouldn’t* be pushing you. It sounds like you’re doing that plenty yourself. Your parents are right about getting the ball rolling on disability. My approval was considered fast (considering that I had to appeal and then have a hearing) and it took a total of 18 months. I was told to assume just getting the hearing would take that much time.

    But don’t just consider SSA. There are two other places you need to apply. Your state should have something that supplements people with disabilities. It’s not a lot — even in Washington it was something like $330 — but it’s significantly better than $0. And they’ll help you qualify for food stamps, which will help out your parents.

    You also need to apply for disability for your student loans. You will need a doctor to write up an assessment for you, but it sounds like that won’t be a big deal. If approved, your loans will be forgiven completely. And by the way SSA approval isn’t enough, crazy as that is. So get started on the student loan disability application now rather than later.

    Here’s my method for coping. One size doesn’t fit all but for what it’s worth… I don’t think about pushing myself to do something except in extreme situations. (I feel crappy but my husband is too sick to go out for me.) Instead, I try to assess throughout the day what I think I’m capable of. I work off a list and try to cross one or maybe two things off a day. Since I’m a depressive, some days no items get crossed off. It’s just too hard to deal with even a simple task. And that’s normal for a depressive. Don’t beat yourself up because it wastes what little energy you have.

    Embrace your naps. You need them. That is your body telling you what you need. If you’re worried it’s depression related, try to get (read: sit) in the sun or by a UV lamp for 20 minutes a day. But chances are you’ve built up a deficit by trying to force things on yourself. So when you need a nap, take a nap.

    It can be aggravating, sure. But if you give your body what it needs — rather than fighting it constantly — you’ll probably find you have a little more energy. Fighting your body and allowing shame to overwhelm you burns a surprising amount of energy.

    I know people suggested MeetUp and it is a good idea… except that right now you can’t really leave the house. So don’t push yourself there. If you start respecting your body’s limits, it might get easier to leave the house. If not, and you really want to try an event, make it a point to rest for two to three days ahead of time. And, yes, be prepared for a couple days of feeling worse than normal.

    Not to self-promote, but I just did a post about this. (I have a blog about disability and frugality. As in, very, very imperfect frugality.) http://ipickuppennies.net/2014/03/counting-my-spoons/

    Don’t want to read that? Perfectly OK. But at least google “spoon theory.” A woman wrote a wonderful post equating spoons to energy and really grasping/making other people grasp the idea of severe limitations. It might do you some good to read.

    Okay, so I wrote a small novel here. I expound a lot when it comes to these kinds of subjects. I hope you end up reading this. And if you want to ask me anything or just chat about how much this all sucks: seattlegirluw@yahoo.com

    1. *Update and expansion on the student loan portion of the advice* As of July, proof from SSA is now accepted for disability discharge of all federal student loans IF your review period for benefits is set for >=5 years (what SSA considers long-term/permanent).

      If you are not yet receiving benefits, the physician certification may be faster but is often a hassle that requires multiple rounds of corrections and submissions. Go to http://www.disabilitydischarge.com to see all the resources.

      You may also benefit from an Income Based or Pay As You Earn plan. If you submit an application saying that your personal income is below approx $1300/month, you qualify for a $0 minimum payment. You can reapply every year as long as needed. This is great for ramping up payments voluntarily when you decide it’s possible, or just to hold off on payments while sorting out the disability benefits or disability discharge. It gives you flexibility overall. (Postponing/lowering the payment means the balance increases but you’ll have a light at the end of the tunnel – forgiveness after 20 or 25 years of very low payments, disability discharge sooner if you qualify, or deciding too voluntarily pay more aggressively if your health and employment situation allows)

      1. Good to know because my husband is now on disability and they wanted him to find a doctor to say he was unable to work. That’s a problem because his disability is exacerbated by stress. The only way to prove to a doctor that he can’t work would be to get a job and utterly destroy his carefully and painstakingly built health. Ah, bureaucracy!

    2. Very well said.
      My life got so much better when dealing with my issues stopped meaning “ignore my mind/body and push past the pain,” and started meaning “figuring out how to work with the physical/mental resources I’ve got.”

  53. delurking! Long time reader and fan of the Captain. I’ve had my own recent bout of clinical depression and anxiety, and I think CA has shared some great tips. Here are a few other things that worked for me and still work for me. Maybe they will help you too!

    –Meditation. Maybe the yoga is already sufficient, but I thought meditation was super helpful when my anxiety was at its worst. Every morning when I wasn’t able to work, I would get up and do a guided meditation by Reggie Ray, who has free audio guided meditation at his website. dharmaocean.org.

    –Blogging. It sure is lonely to be not working and to be depressed and anxious. It was nice to have online friends to root me on and sympathize. Also just writing most days helped.

    Also, I know the Captain says it’s not up to your parents to push you. That you have to push you. But I know what it’s like to not be able to push myself. But I am back at work now. I had a lot of trouble getting out of bed and going to work. Still do. So my mom calls me every morning to make sure I get up. Please note that I am 39 years old! But she’s my mom and she’s open to doing that for me. And it really helps. So if your parents are open to helping you in ways like my mom is helping me, take advantage. She’s still my mom. They’re still your parents. There will probably come a time when my mom says, ok enough. And I’ll have to figure out if I can do it on my own at that time. But until then I am taking advantage of a little nurturing while I can.

    1. Regarding the pushing, I think everyone needs a little help with that from time to time. I think the difference is that when you’re a child, your parents make a lot of the decisions about what you ‘should’ be pushed on – in fact legally they’re obliged to ensure you do things like go to school. As an adult, you need to be the one who decides what you want and need to be pushed on.* If you decide you want a push to get up in the morning and recruit people on your Team You to do that, that’s different from other people deciding of their own accord you should be woken up every morning. I wondered when I read the letter whether LW’s parents are trying to respect her/his adult autonomy and are holding back from pushing, but would be open to exactly the kind of helping you describe. They might find it a great relief for the LW to explicitly say ‘I want to do x and y, and you can help me by doing a and b’.

      * Sometimes adults also need help to decide what they need to work on. But this ultimately still has to be their decision.

      1. This is a good point.

        Asking for help with something specific is something all functional adults do, and it could be a good way to transition mentally from “my parents are taking care of me” to “my family is helping me through a rough time”.

  54. I slept in this morning and something occurred to me. You’re sleeping a lot and having naps more often than most people your age. Aaaaand you’re “pleasure-deprived” for lack of social and other activities.

    In your place I’d try to make the bedroom as pleasant and welcoming as possible. It’s not a prison, it’s not a punishment, it’s not something to feel guilty about. Feeling comfortable and nurtured and satisfied that you’ve made a pleasant place in the world is good for the soul – it’s not just chicken soup that can do that.

    Most importantly, you’ll be giving yourself the best chance possible to wake more refreshed and more relaxed than if you treat it as a kind of dull, tiresome, unavoidable refuge. With any luck, on your better days it will be reinvigorating to start out from a pleasant, reassuring environment.

  55. Once you have yourself back on a positive track, LW, with the fibro and depression under as much control as possible, get a map of your country, figure out the farthest city or town from your very helpful and supportive parents, pick a part of the town that is likely to have jobs in two or three fields you’re interested in/can manage — and move there. It doesn’t matter if you have to live in a converted garage or an attic for a while. That’s adventure, and you’re missing adventure in your life. It might go horribly pear-shaped, but you deserve to see what life is like without the training wheels.

  56. LW, first I want to say, go you! You have a TON of really heavy stuff going on right now, but you haven’t given up – you’re looking for ways to make your life better. That’s huge. Also, it sounds like each of those things is making the others worse, so if you can find something to help alleviate one problem, there’s reason to hope that your life can significantly improve.

    My story: I have CFS and barely graduated from high school. I did get my BA and do an internship across the country immediately after graduating, but when that ended, I moved back home and this began the low point of my health – no job, few local friends and no energy to see them, etc. I want to echo those above who say that having a fun reason to get up is super important. Telling yourself you have to get up to do some chore (or work) isn’t nearly the same as having something you actually look forward to; at that time pretty much the only thing I cared about was watching ATLA, so I made sure that that was the first thing on my schedule every day (at noon, because let’s not go overboard here). LW, it made SUCH a difference! After that I was able to do stuff, at least a little bit. I understand that having depression can mean there’s not much you look forward to, but if you find something, milk it for all it’s worth – give yourself permission to really relax and enjoy it.

    Also, FWIW, after some bumps in the road I landed a full-time job at my alma mater and am kicking ass. I find that my life is much improved when I stop worrying about trying to “get better” and focus on taking care of myself and living well with the disability I have, which in my case means lots of hot baths, giving myself permission to take time off when I need to, etc.

    Good luck, LW. I can’t promise that your path will look like mine, but I believe you will find one.

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