#890: “I have chronic pain and need to quit my job. How do I tell a) my boss and b) my skeptical parents?”

Hi Captain Awkward,

To make a long story short, I was recently diagnosed with a genetic condition that explains why I’ve had full back pain for the past five years. In those five years between symptom onset and a diagnosis the pain has just gotten worse.

I’m only 19 and going to university but I come home during the summer so I can save money (the city where I go to university is so ridiculously expensive) and be with my family. Unfortunately, my family is not the most understanding when it comes to my pain. My mum has the same genetic condition but a much milder form and while she seems to acknowledge on an intellectual level that I am in constant pain and because of that am suffering from depression, this doesn’t translate well into words or actions. She just seems exasperated that I’m not able to work 9 hours a day 6 days a week anymore. (My dad hasn’t voiced an opinion on the matter but I sense he’s disappointed that I’m not living up to my full potential.)

I need your help with the following two situations:

1. I need to resign from my job. I work at a small independently owned business and my boss has been nothing but understanding when it comes to my pain. However, I can hardly make it through even just 5 1/2 hours of work and I feel it’s unfair to my coworkers that I can’t show up to work on anything resembling a consistent basis. What can I say to my boss when I quit that is short and sweet so I don’t burst into tears in front of him? I want to thank him for being understanding while acknowledging that I have not been the best employee of late due to my pain.

2. I then need to tell my parents about my resigning. I have to go back to university in September so I’m only really quitting a few weeks early but money is tight for me and as I said, my mum isn’t the most understanding when it comes to my pain. Do you have any scripts for saying, “Hey, Mum, I’ve quit my job a few weeks early so when you come home from work you’re going to see me lazing around on the couch but I’d like you not to judge me for that?”

The good news is that when I go back to university I can access proper health services again (because rural Canada absolutely sucks when it comes to healthcare access) and get the specialized physiotherapy I need to help manage my pain. But in the meantime, I can’t really do much about my situation. If you or your readers could help make my remaining weeks at home a little less emotionally painful, I would appreciate any scripts/advice you have.

Sincerely,
Sick and Tired
(female pronouns please)

Dear Sick and Tired,

This is a lot to handle all at once. I’m sorry your family is not being supportive. You don’t need pressure from your folks on top of everything else, and you aren’t doing anything wrong or “lazy” by taking care of yourself for a few weeks.

I am wondering if invoking the doctor who diagnosed you (& possibly getting some kind of doctor’s note from that person) would help with your parents, since they aren’t really listening to you. I am also wondering if attributing everything to your doctor would help you frame your resignation from work more easily for yourself. To be clear, you *shouldn’t* have to have the doctor’s say-so to be believed and be allowed to care for yourself, but our culture has a  horrible tendency to discount women’s experiences of pain, so if being able to say “My pain is making it impossible to work and my doctor recommends that I take the next few weeks off to recuperate before school” helps you get the words out, don’t be shy about cloaking yourself in that authority, with or without a note or even contacting the actual doctor.

To resign from work without crying in front of your boss, write it down in a resignation letter or email.

Dear (Manager),

I am resigning my position effective [date]. I am very sorry not to finish out the summer or provide more notice, but at my doctor’s recommendation I am taking a few weeks to recuperate before returning to university in the fall. I’ve enjoyed working with you and the team, and I greatly appreciate your flexibility and understanding these past few months. 

Sincerely,

You.

Your boss has seen employees quit their jobs before. Your boss has most likely noticed that you are having trouble working and that you are suffering. It will be okay! You don’t need all of your medical details in the letter, just mention that there are medical reasons so that’s on record somewhere. Your boss will come find you after he or she gets the email, and you might cry. It’s okay. The hard part of delivering the information will be over.

As for your parents, I think you want to deliver something close to the same message:

At my doctor’s recommendation, I am taking the last few weeks before school to rest and avoid further straining my body and aggravating my condition.

See what they say to that. Their reaction is theirs (not something you caused, and not something you can prevent). If they make disappointed faces but keep hurtful things from coming out of their mouth-holes at you, call it a win and cut the conversation short for now. If they hit you with a lot of skepticism along the lines of – “Are you sure you really need to stay home?” “I have the same condition and it never stops me!” – try the blunt truth:

“It was not an easy decision, since it means trading financial strain for the hope of some physical relief (or at least not making the condition worse). Also, on top of feeling physically terrible and worried about money I have been very anxious about telling you, because I was worried that you’d be disappointed in me.” 

Hopefully they’ll get it – btw a good parent answer here is a variation of “I’m not disappointed in you! I could never be disappointed in you! I’ve just been worried, for all the same reasons that you are. It’s really hard for me to see you in so much pain. I’m sorry if that’s been coming at you like disappointment when it’s the opposite of what I am feeling.

If they don’t get it, draw the line:

“The decision is made, so can you try to be supportive? Dad, I would 1,000 times rather be at work than have you adding to the stress by acting like you don’t believe me and treating me like this is something I brought on myself. Mom, we have the same diagnosis but you don’t live in my body, so please don’t tell me how serious my pain is – you don’t know.”

Then end the conversation and see how it goes the next day.

Finally, if you want to, there is some stuff you can do to try to make the optics of staying home go a little smoother for the judgey “I guess you just did nothing all day like a goddamn princess” brigade. I say “try” because again, your parents’ reactions are about them, not about you. You do not have to be a certain amount of “productive” in order to be worthy of love and support. However, it if it will help you be able to say to yourself “I did my best to make this go okay for a couple of weeks” or “I am doing my best to have an adult relationship with my parents” or even “I’d like to feel like I could control something, anything right now” it might be worth it to try some new things out.

a) Do you know about ChronicBabe, a web community for young women with chronic illnesses? Now you do. You’re far away from school and far away from the reliable medical care you need, but you can talk to other people who are navigating the same life stuff as you.

b) To the extent that you can, try to get on a similar schedule to the rest of your household, and try to get up and go to bed at the same time every day. You may need a nap in the middle of the day to catch up on sleep when your parents are at work, and that’s fine (the point of taking time off is to rest, right? GET YOUR SLEEPS). There’s just something about a young person sleeping late that brings out the “It must be nice” in an already-critical parent, and no amount of linking to scientific literature about how much sleep young people need is gonna fix your parents’ attitudes about this between now and when you go back to school.

c) Break up the routine, especially the bad routines. For example, right when your mom comes home from work seems to be a point of maximum tension/worry for you- the idea that she’ll see you “lazing around.” Back in this letter, the LW found herself bracing for when her roommate comes home from work, because she knew it would be COMPLAINING TIME. What could you do to make that particular time of day less fraught? Is it simply a matter of being up & dressed & not in front of a TV & not easily available to her during that window right when she comes home? (This is all stuff that shouldn’t matter in how she treats you, but removing the source of friction might head some of the stuff you’re worried about off at the pass, plus it’s a thing you can control.)

d) Are there some routine household tasks that are within your current physical abilities that you could take on, without being asked or making a big deal of it? If your parents usually do the cooking, could they come home from work to dinner on the table a couple of nights a week? (Protip: Keep it simple and clean as you go so they come home to dinner and not a giant dish-pile). Does the living room need a duster run over it for a second or the kitchen floor need swept or the bathroom wastebaskets need emptied? Have the pets been watered/walked/litter boxes scooped? Do NOT do anything that hurts or strains you, and do NOT become Cinderella in an effort to “prove” your worth to others. Think: 15-30 minutes of “work”/day, and think of it as deciding to take up some space as a fellow adult in your household.

e) This may sound counterintuitive, but also on the subject of forming adult relationships with parents, see if you can spend positive time with them, like, family movie night with whatever’s new in at the library, playing board games together, asking them to teach you a family recipe, etc. When everybody’s shields are up, sometimes low-stakes positive interactions can release the tension.

f) Think ahead to the classes you are taking in the fall, find some good books at the library (your friend, when money is tight!) or articles or online tutorials on the topic, and dive in. My recommendation? Delve into the fun, interesting topics that you enjoy, not the ones that you have to slog through right now. You only have to do a little bit every day to be able to supply “I did some reading for my courses this fall to get ready” or “I taught myself some video editing” to a loaded “So…what did you do all day?” A dubious “Hrmmm” from your folks (vs. starting an argument where they get to say how disappointed they are) is a victory here.

g) Lean on your local friends and do things that you enjoy outside the house with them when possible, and Skype/text with your non-local friends. If your parents make you feel judged and lonely, one of the best things you can do to take care of yourself is to get around people who like you and who are nice to you.

I was raised with a “If you are too sick to go to school or work you are too sick to do literally anything that might give you pleasure” mentality. When I got older and I got dx’d with some mental health conditions (and lately when I’m dealing with some chronic mobility & pain issues) it’s been really effing hard to get the voice out of my head that says I don’t deserve to do anything enjoyable because I haven’t “earned” it. If I give in to that voice, it creates a self-defeating cycle, because avoiding the good/fun stuff isn’t gonna suddenly make me able to do the stuff I can’t do right now – it’s just gonna make me more depressed and isolated. If your parents try coming at you with the “Oh, you couldn’t work but you can go swimming with your friends! I see how it is!” bullshit, remind yourself and them: “When I was working I was in so much pain and so exhausted that swimming with my friends would have been impossible. Now that I am learning to listen to my body, I can go swimming for a little while, and being in the pool takes the pressure off my back. That’s good news, right?

h) Remind yourself: It’s not forever. One day at a time. One week at a time. Soon you’ll be back at school. The time is gonna go so fast.

Edited to add: i) Remind yourself: BREAKS ARE VALUABLE. For you, a break is essential, because you are in pain and maybe rest can help your body feel better. Even if you weren’t dealing with a health condition, breaks/vacations/holidays would be valuable and good. So: Read for pleasure. See your friends. Catch up on your sleep. Watch some movies & TV. Do your hobbies. Work at being alive and feeling good. Resist the idea that you must be or appear “productive” at all times or you have wasted your time. ❤ ❤ ❤

93 thoughts on “#890: “I have chronic pain and need to quit my job. How do I tell a) my boss and b) my skeptical parents?”

  1. LW, this absolutely sucks but you are absolutely the boss of your body and the advice here is great.

    You didn’t ask about this, but I was wondering if you have thought about reaching out to your school? One thing that might really help getting you set up for the upcoming school year is to get in touch with disability services department of you school, if they have one.
    Even if you end up being able to do school at the same level you have in the past without accommodations, it’s good to get a sense of what options you have, what resources they have, and how much help is available to you in case you find that school gets harder. If your job in the house is “student” and your parents respect that, keeping that on track may go a long way to keeping good relations going.

    Also, lots of teachers/professors can hook you up with their readings and books in Advance of the school year starting, so if you can make contact with them, you might be able get a head start on your reading for the summer, or at least buy the books beforehand.

    1. Re: getting ahead on schoolwork. Most college libraries allow professors to request that specific books be put on reserve for their courses, and if your library and your professors are on top of things a lot of those lists are probably available now. If you know what courses you’ll be taking, you may be able to get in touch with your school’s library and find out exactly what books you need, even if the profs aren’t able to send you a full syllabus yet. (My library gives students digital access to the lists, if you know where to look for them–it’s really worth calling the circulation librarian and finding out how your library does it). Also, if you’re short on money, this is a great way to have access to the books when you get to campus. You check them out for a short period of time–usually two or three hours, enough to study for the afternoon. In my experience only a few students take advantage of this, so unless you’re in a very popular or large class, the books will probably be available to check out most of the time.

    2. Professor-type here to co-sign on this advice. Disability services offices are great resources on college campuses to help students with chronic health issues. They can work with you to figure out what accommodations you might need based on your diagnoses and help your professors provide said accommodations. It’s good to figure these things out early in the academic year so the accommodations are there for you to use when you need them. When you’re in the midst of both a health crisis and midterms, the last thing you need is to have to arrange for a bunch of appointments with doctors and administrators so you can get your accommodations set up.

      1. As another university-type person, I just needed to note that while disability services can provide helpful contacts (and sound GREAT on paper), in the end they are like the HR office in any business — they do not work for the well-being of students but for the University.

        I work at a university which shall be nameless, and which actively uses the Disability Services office to rid itself of “undesirable” students. This comes as a shock to students in need of actual help.

        1. That is horrifying! I work in disability services for a university – which shall also remain nameless – and I agree that my first responsibility is to the university. However my responsibility is to ensure that the university is taking any and all reasonable measures to accommodate students with disabilities, in line with relevant legislation, etc etc. If any pressure came from the university to get rid of ‘undesirable’ students, I’m pretty sure my entire department would quit in protest and probably involve the Human Rights Board. I’m sorry you’ve had that experience.

    3. Getting in touch with the disability office and filing for assistance is also helpful even if you don’t need it right now, because things change and you might need it without notice. It’s a lot easier to file now and not need it than to need to file and have to wait a month or more for accommodations.

      I know for me, once winter hits, my pain levels shoot up dramatically from where they are right now, and at that point, accommodations will be really helpful. I can file now and tell everyone that might need to know, “I don’t need these now, but I will, and I’ll let you know when that is.”

    4. Getting in touch with the disability office and filing for assistance is also helpful even if you don’t need it right now, because things change and you might need it without notice. It’s a lot easier to file now and not need it than to need to file and have to wait a month or more for accommodations.

      I know for me, once winter hits, my pain levels shoot up dramatically from where they are right now, and at that point, accommodations will be really helpful. I can file now and tell everyone that might need to know, “I don’t need these now, but I will, and I’ll let you know when that is.”

  2. One thing to note: you absolutely do not need to go into any details that you don’t want to when you resign. Something like, “For medical reasons, I need to resign effective X day.” That’s it. (Technically you don’t even have to include the ‘for medical reasons,’ or can gloss it as ‘for personal reasons,’ but chances are really good that you’re going to get asked some form of ‘why’ so it may be easier to head it off at the pass.) If you want to resign in person rather than via email/letter, get it down to one simple sentence like this and then practice saying it, out loud, ideally to a mirror. Say it enough times and the rote-ness of it will get you over the bursting-into-tears sensation most of the time.

    As the Captain says,

    If you get a follow-up question, if your boss is a decent person (which it sounds like he is), chances are good that it will be simply out of concern for your well-being rather than a demand for a justification. You can just reply with something like, “I’m working with my doctor to handle it, but thank you for your concern.” The beautiful thing is that even if it is a demand for justification, the phrase still works–that’s a beautiful Miss Manners trick, which is to reply to nosy or inappropriate questions/statements as if someone had said something appropriate. It tends to befuddle people for long enough that you can escape the conversation. (But as your boss is understanding, my guess is that any follow-up questions really will be simply out of concern, which makes it doubly appropriate.) Alternately, if he offers to adjust the job to make it possible to do, you can say something like, “I really appreciate that, but resigning would really be best for me right now.” (You can practice these phrases–out loud, again–as well. In fact, even if you do resign via email, it may be worth practicing these because you may need to talk to your boss again in person anyway, if only to cover transition/last paycheck/whatever. Going into it knowing what you’re going to say and having said it so you could hear it in the air will make it so much easier, in my experience.)

    Good luck, and I hope your access to medical care improves swiftly!

    1. Whoops, floating half sentence! That was supposed to be:

      “As the Captain says, bosses are used to people resigning and expect it. It feels like a much bigger deal to you than it will be to them, which is good to remember if you start to worry about his reaction.”

  3. LW, I haven’t worked for a long time due to my own chronic health issues. I’m lucky enough to have financial stability and a mostly supportive family, but there’s still a voice in my head that wants me to work harder to live up to my “potential”, which it defines as my intelligence and education rather than my actual current abilities. So what I want to recommend is that you make friends with that voice (whatever it says to you), because it will whisper in your ear when others are questioning you. Be compassionate with it, recognizing that it’s struggling as much as the rest of you is with your limitations in the face of personal ambitions and social expectations. Remind it that there’s no one right way to operate in the world, and that you’re just living in the moment with the cards you’ve been dealt.

    I want to say more but I have to get dressed and go see a health care provider, so I’m off–good luck to you!

  4. On the topic of you sensing your father’s disappointment about you not living up to your potential…I think you need to consider that there are two different potentials here. One is the potential of someone who is not in chronic pain. The other is the potential of somebody who is in chronic pain. It’s not fair to you to measure yourself against the wrong standard. The Chronic Babe site is a good one, and you should familiarize yourself with the concept of Spoon Theory. I think it will help you feel a lot better emotionally about what you are still able to do, and that is a win of its own.

    1. The other part of that is that you, LW, are the boss of your own life and you are at the mere beginning of your adult academic & professional life. Your “potential” is whatever you decide it is, and the person you live up to is yourself, in the body you have, at this juncture of space & time. Your parents (hopefully) did and do the best they can to give you opportunities and love. What you become in the future & the road you take to get there is yours. Your dad’s feelings about you are not yours to manage, and he’s going to have to learn to manage his disappointment if he wants a good relationship with you. You aren’t having chronic debilitating pain *at him.* You will help him and yourself if you remind him of that – “Dad, you’re acting like you are disappointed in me, and it really hurts my feelings. Do you think I am lying about being in pain, or choosing to have this problem? It’s okay to worry and wish things could be different for your kids, but when you (say/do x specific thing) you make it seem like you wish *I* were different, and that’s really hard to take.”

    2. Also, consider nuking the idea of “potential”. I definitely had to, for different reasons that also included parents keen on “potential”. Who you are, right now, is already great. You being a good awesome person is not something that will be ever only at some indeterminate date in the future. No. It is already happening, right now.

      1. YES. I have painfully come to the realization that the concept of having “potential” as a human being is incredibly toxic. It’s not bad when applied to a particular skill or task–“this piece of writing has a lot of potential,” say, can be a perfectly fine thing to say when e.g. editing a story, or even “you have a lot of potential with flower arranging, you have such a great eye for color,” if you are an experienced flower arranger mentoring a newbie. But telling a person that they as a person have a lot of potential, or that they’re not living up to their potential, or etc., basically boils down to saying “you are an insufficient person as you are, but I am generously going to wait for you to live up to my expectations.” Which, yeek.

        1. Also the concept of “potential” assumes that it’s on some sort of scale…like you could be marked out of 100 or something. But there are so many different things a person could do/be, I don’t think it can be ranked like that. Am I reaching my “potential” if I have a job my family considers low paying, but I’m really happy and fulfilled? I think so. Others might think “reach potential” means make the most money, or do the most good for the world as a whole, etc. Nobody can possibly be every “potential” thing they could, often one choice cuts off another. Sorry, I’m kind of rambling, but thinking about it the concept of “potential as a human” starts to lose meaning for me…

      2. Yesssss. If I could I would set the entire concept of “potential” on fire and dance around the flames. From experiences with my dirtbag emotionally abusive ex-boyfriend, I’m pretty sure that “potential” means “Everything about you is wrong and you’re lucky I’m here to tell you how to be. Now drop this ridiculous idea that you get to decide who you are and do what I tell you.” Fuck. That. Noise.

  5. As an adult who suffers from chronic pain 24/7/365, I would like to make an observation. After you get the treatment you need back at school, think about the kind of work that you could do (then or later, even for your career) even with some pain. For example, standing for long hours would probably be a “don’t ever do, even on meds” or similar. Because meds help manage pain, you might think you can do something that would usually be too strenuous. DON’T. (Or at least, don’t do very often.) Because then you might get a pain flare, need larger doses of meds, and have a hard time getting over the flare. And the more meds you take, the less you will be able to concentrate as pain meds have those happy side effects.

    I guess where I’m going with this, is that managing pain you need to be realistic. Optimism and positive thinking can help, until your poor body has had it. If you can avoid the most stressful/painful things, and pace yourself, that should hep you a lot. Good luck!

    1. It’s so hard to be realistic. (And sometimes there will be people in your life that you think are naysayers but who turn out to be realists. Those people are valuable, but you have to be able to tell them from the naysayers. My husband is consistently better than I am myself at realizing what my actual limits are — probably because he’s the one who has had to pick up everything I’ve fumbled since I became ill.)

      1. My husband is too, and omfg, it *sucks* sometimes.

        I’m particularly sensitive to being told (no matter how gently and well-intentionedly) that I probably can’t do things, not just because my parents were and are very achievement-oriented and quite perfectionistic about certain things, but also because my parents have a history (and, uh, a present) of either
        a) expecting me to be able to live up to my high-achieving-pre-illness potential, or
        b) telling me that I can’t do things that I actually can (or, if i clearly can and am doing them, that I *shouldn’t*, because: we have different priorities. Theirs are much more around a puritanical-style work ethic, 9-5 work and Looking Normal, with a side of “you said you couldn’t do X on occasion y, so you’re never allowed to be capable of doing X again without your credibility becoming suspect”).

        For the record, good on you for being proactive about having these not-fun conversations, and taking care of yourself. It’s certainly a better approach than the one I took in my early 20s, which largely involved ignoring it and hoping it would go away while slowly becoming less and less functional and more and more convinced that I was lazy, stupid, “crazy”, etc. (in my defense, I was missing several of the key diagnoses and didn’t feel that incoils quit things without a “legitimate” “reason”.)

  6. LW this is a sucky situation to be in all round. I’m loving the advice Captain Awkward offers.

    It can be particularly difficult for sufferers of invisible conditions to explain to other people what they are are going through. People don’t get it and our society does have a tendency to tell us to just buck up and it can’t really be that bad. News flash: yes, yes it can.
    I have a friend and a family member who both suffer from a chronic pain condition and although I tried to be supportive it was very difficult to understand, because things that I could just do and not even have to think about as a “thing”, like go for a nice walk, vacuum or cook for example, they couldn’t.
    My friend used to Spoon Theory by Christine Miserandino to explain it.
    Can we post links here? If not I’ll remove it http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

    It is the best explanation I’ve come across and maybe it could your parents understand that you are not being lazy or not trying and that a chronic pain condition is just that, chronic! Hoard your spoons and Good luck with the Fall Semester!

  7. LW, the Captain’s advice is spot on as always, but it would also not be terrible if you did burst into tears when telling your manager about your situation. Generally the advice is to avoid crying at work, and it’s completely understandable if you just don’t want to do it, but this is an instance where nobody would blame you if some tears happened. They sound sympathetic anyway, and this is a legitimately hard situation which most people would find distressing. If your bosses’/colleagues’ sympathy were to set you off, I don’t think it would be perceived badly by them if you were to cry.

    I only say this because the more open I’ve been about my pain and associated struggles, the more kindness and understanding I’ve had. It brings the occasional jerk out of the woodwork, but generally people have responded much better to me being vulnerable than I ever expected. Got to test the waters and assess when it’s safe to be open, but generally it’s been much easier to get what I need when I tell people what I go through. This took me a while to realise, because like you I didn’t have a very sympathetic upbringing. I made my condition much worse by behaving as though I couldn’t show any weakness.

    Also, it could be worth saying to your mother, ‘The doctor said that this condition affects everyone differently, and in my case I need to rest as much as possible now, if I’m to reduce the chance of worse problems later, and maximise my chance of having a productive life. Slow and steady wins the race.’

    1. Ooh, yes, agreed. It’s understandable that you want to avoid crying at work for any number of reasons, but if you do, it’s not really that big of a deal. It may make you feel better to acknowledge it when it happens with something quick and simple like, “I’m sorry, this is a pretty emotional decision for me,” but either way, rest assured that a sympathetic boss (like it sounds like you have) is not going to think it’s horrible if it happens.

      (And sometimes going into it knowing that it would be okay to cry, ironically, makes it less likely to happen! I think because the ‘oh god what if I cry oh god is that the start of tears OH NO HELP’ cycle doesn’t kick off as badly.)

  8. Ditto what Kitewithfish said. I didn’t have a diagnosis in my college years but that’s when my pain condition was seriously setting in and I didn’t have the internet to ask for advice.

    Not all schools are good at this but ours did offer some services, and in the pain that you’re experiencing, whatever support you can get is helpful. And it can help to introduce yourself to your professors and give them some background – I had some amazingly understanding professors who gave me incredibly generous accommodations so that I could do my best work without hurting myself too much more. Also, do you have any good or trustworthy friends who go to school with you who could also provide a bit of support? I relied more on friends than my parents because they didn’t understand either, and that made it possible to be more independent.

    Best of luck, I truly hope the physio helps you enough to manage the pain better.

  9. Good advice; I’d forgotten about ChronicBabe myself, CA, thanks for reminding me 🙂

    LW, good advice isn’t necessarily easy to follow. Try not to beat yourself up about having the occasional day when all you can do is rage about how unfair life is or fantasize about punching god in the face 😉
    I’m still fighting to escape the “if you’re happy you’re not really sick” BS myself… yesterday sucked.

    Since you’re in canada, check if you’re eligible for EI. Resigning might complicate that, and I’m not sure if you’ve worked long enough to be eligible, but it does cover medical reasons.

    Oh, and on the subject of physiotherapy, I’m not sure if it applies to your pain, but my weird muscle problems were helped immensely by Kelly Starrett’s book (and free youtube videos). One of my favourite videos should be the first google result for “slow death by texting”. (…I’m not linking to it because links get moderated, but, now I’m wondering if that’s silly…)

  10. Hi LW! I also have a chronic condition (inner ear stuff, not pain) and I am so, so, so sorry that you are having to deal with all of this on top of your diagnosis. I second the Captain’s advice about trying to get some sort of doctor’s note that you can show to anyone who questions your need for rest (including your parents). People believe the doctor. You shouldn’t have to have “doctor’s permission” to do what you need to do in order to not suffer, but society sucks that way. Having a doctor’s note helped me soooo much with explaining my limitations to my boss. Also, if you think it will help and if you are comfortable with it and you are positive your doctor is going to be supportive of you, you might consider having a meeting with your doctor and your parents, so they can get their information directly from the doctor. Then, your parents won’t be able to argue that you are exaggerating how much rest you should be getting/other medical things the doctor has instructed you on. Hang in there and take care of yourself!! You are worth taking care of and you deserve to do what you need to do to feel better. Jedit hugs.

  11. Dear LW, I’m sending you a virtual box of purring kittens in case you’d like some jedi cuddles. You’re doing the best you can, and that’s good enough ♡

    The Captain’s advice is the best for this situation, I think. However, I’d like to add something which, although it’s not as helpful, can be effective too:
    Sometimes, when people are mean to you, the fastest way to get them to stop is lashing out with your sharpest words. Ex: “Must be nice to stay at home with nothing to do” “I guess. Must be nice to never have to deal with chronic pain, uh?”
    Long-term, it’s always better to take the higher ground and be the better person. People react to compassion better than they do to sharp words. However, sometimes you’re in pain and depressed and you don’t have the energy to be nice, but you need the world to just shut up and leave you alone. Those times, being mean right back can make people shut up quicker than anything else.
    LW, it’s alright if you don’t always have the energy to be nice. You’re in pain, you get more than a free pass in my book. Do whatever you need to do to keep your head over the waterline and focus on your well-being. You really shouldn’t have to worry about other people’s bruised feelings on top of everything else.

  12. Dear LW,

    Chronic Pain fistbump! Mine is lingering issues from an accident, but yeah. It’s difficult for people to understand.

    I’ve been living with my family since before I was injured, but post-injury, as I was able to do certain things, I did them to sort of ease the tension in the situation.

    So, I can’t work (and am going back to school soon so I can enter a different field where I *can* work with my limitations), but I am great at handling logistics. So all that crap that my Mom put off or just didn’t arrange? Done. I can totally make phone calls for an hour if it eases her burden and also makes me feel like I’m contributing to the household in some way. I could handle stuff like contractors and repairmen coming by, since I’d be around the house all day, which also didn’t really inconvenience me much (I didn’t want to go out, I’d rather sit home and knit and save my legs for stuff I care about) and- took something off her plate so she felt less stressed (and thus didn’t feel resentful). When I can, I do the food shopping and meal planning-ish for the week and cook meals. All of this is real, serious work that’s within my abilities right now, and also prevented my Mom from feeling resentful. Granted, my Mom is a nurse and she’s actually pretty good about this stuff, but it’s made it easier for both of us for me to be able to say, “Hey, I took care of X and Y while you were at work”. Even if I don’t have the spoons for things I used to do (weedwhacking, I’m looking at you), I can manage other stuff and keep that moving smoothly. Bonus: my mom doesn’t complain when I go out to meet my friends, because she’s able to relax and doesn’t have to focus on those tasks I’d managed to do.

    I often wish we lived in a perfect world where it didn’t suck assballs to have chronic pain- not just from the pain, but because there’s this giant expectation of LABOR from us constantly, both at home and at work, and it’s a lot of stuff and when you’re *in* chronic pain it’s just so often beyond your capabilities. So, figure out the tasks you can do, and if you can do them, do them. If you can do a part of something so that the whole of a task is easier, talk to your family about doing that part.

    Good luck, LW. This is a hard road to navigate, and I wish you the best.

  13. LW, I went through a lot of this when I was diagnosed with chronic depression following a major depressive episode and hospitalization. I have only one sibling, and he has always been the “difficult” sibling while I’ve been the one who got good grades, followed the rules, got an “adult” job, etc. etc. etc. My parents’ shock at seeing me fall apart so spectacularly was so eye-opening. I had, for a long time, been struggling with an illness I didn’t understand and reaching out for help, but because I was supposed to be the child who had it together, I didn’t get it until things went VERY sideways.

    Here are a few things I wish someone had told me:

    1. Be gentle with yourself and forgive yourself for having a chronic condition.

    2. Adjust your expectations. I have had to change a lot of my priorities and ambitions. One big trigger for me is workplace stress, so that has meant ruling out some high-stress occupations that I had been interested in pursuing, because I’ve had to accept that I have to prioritize my mental health over pretty much anything else in my life. It doesn’t mean giving *up* your ambitions, it just means recalibrating them.

    3. Prioritize your self-care and your health. You have to; it’s an issue of survival. Do not let people pressure you into doing things that you should not be doing. It’s not selfish or lazy. I know that’s easy to say and hard to do, but it gets easier with practice! I have so little fucks to give right now about how people feel about me having depression that it’s truly amazing.

    4. Ask for what you need and become familiar with legal protections. I don’t live in Canada, but I have education myself on workplace protections and I have been very proactive in reaching out to HR to let them know about what accommodations I may need because of my mental illness. It’s been very hard, since there is a lot of stigma against mental illness, but every time I’ve done it it’s been easier.

    5. Practice advocating for yourself. It can be hard, it can suck, and it can be tiring, but it’s also hugely empowering. I am very quick to call out stigmatization of people with depression now and sometimes just saying “hey, I have a mental illness” takes a tiny bit of the weight off my shoulders.

    6. Accept that it is not your responsibility to manage other people’s feelings about your chronic illness. They can be sad, they can be angry, they can be disappointed, they can be judgmental. That is a CHOICE those people are making.

    7. Find your community, whether it’s online or in person. You need a Team You. Chronic illnesses, especially ones that limit your energy or mobility, can be really isolating. One of the unexpected benefits is that I was able to figure out pretty quickly who my solid friends are – basically the ones still around after being committed are my ride-or-dies.

    1. Commander, thank you very much for this post, I didn’t realise I needed to hear these things till I read it 🙂

      1. I’m glad it was helpful. My life has changed a lot since my diagnosis and it’s an ongoing process.

        Sometimes I get really down about missed opportunities because, in hindsight, I began struggling with depression in my mid-teens, and it really ate a lot of my twenties, so I missed out on a lot of things. It’s easy to get angry and bitter, especially at my parents who never disclosed my family’s extensive history of mental illness until recently, and were, frankly, so checked out that some really obvious warning signs were never mentioned or addressed, but I have to remind myself of the progress I’ve made.

    2. I agree with everything except the word “choice”. I’ve had that one used against me too often to be okay with using it against other people, even if they’re acting horribly and hurtfully themselves. They’re not choosing to have feelings any more than I’m choosing to feel like shit. They’re just expressing them in inappropriate ways. Whether that’s ultimately from some character flaw or their own mental illness is their own business, and not my responsibility.

      1. I didn’t mean their feelings were a choice, I meant their decision to behave in a certain way was a choice. It’s true that you don’t get to choose how you feel, but you can choose how you behave. The LW’s parents may not be able to help being disappointed, but they can help treating their daughter like a disappointment because she has a chronic illness, if that makes sense.

        My life became a lot better once I made the choice not to manage anyone else’s feelings about my depression. The author who writes the comic strip Hyperbole and a Half had a strip about how, in the early days of struggling with her severe depression, she would try talking to a friend or family member about it and they would start crying, getting upset, etc., and it would end up with HER comforting THEM and still not getting any of the help she needed.

        The way other people feel about me having a mental illness is not my problem.

  14. Coming back to mention that sometimes it takes a long time for parents to recognise that their child has a disability, has been suffering a lot of their life, and is probably in line for some more suffering. A parent who passes on a painful condition may have particular issues to be in denial about.

    The perfect parent would deal with this quickly and with minimum impact on others, but few parents are perfect. Not to excuse someone who is being terrible and selfish, but if they are just averagely human they may come through for you in a while, LW. Mine did eventually.

  15. Dear LW- I’m a university lecturer in Canada and I love the Captain’s advice of doing something that you enjoy related to your schoolwork but isn’t necessarily the hard work of slogging through a textbook or academic literature. Listen to a popular audiobook on the topic, read a novel somewhat related to it, or watch youtube videos or a netflix documentary if they appeal to you. This is an excellent way to familiarize yourself with the topic and hopefully being able to get your much needed rest at the same time. Your knowledge will help you when you get back to school in September and you can truthfully tell your parents and yourself you are preparing for your courses, even if you’re using non-academic sources.

    1. Falling down a Wikipedia rabbit hole is also a fun way of familiarizing yourself with the breadth of a topic and some of its controlled vocabulary. Also, LW, if your course is going to require that you take a foreign language, you could sign up for duolingo or do some other language pre-preparation if that’s a thing that’s fun for you. (It is for me, but I understand that’s not true for everyone.)

  16. Dear LW,

    You say you have to quit because 9 hour days are impossible and even 5&1/2 hour days are a strain.

    If you want to keep at your job (or if you want to go back to it next summer), you could discuss part time work with your boss. You’ve said he’s understanding, it’s possible – maybe even likely that he’d be happy to work out a schedule that accommodates your physical needs to his professional needs.

    If you do want to discuss a different schedule with him, my suggestion would be to write up the kinds of accommodation you believe you’ll need. Then talk to him, and send him a follow-up email about the discussion you’ve had and whatever agreements you make.

    Again, this is only if you want to keep working this summer’s

    Good luck, and Jedi hugs if you want them.

    1. And Mrs Morley’s point that they might be fine with reduced hours, or changing your job a bit so people aren’t reliant on you, may also be a possibility if your boss is understanding.

      However, you may still wish to resign entirely. Also understandable! I disagree with the suggestion to email your boss – these conversations are generally better to hold in person, if possible. I would arrange a meeting with your boss and say something like “Boss, thank you for your understanding over [time period]. Unfortunately, my current health means I can’t consistently commit to my current workload, and therefore, I am resigning on [date].” It’s okay if you cry! Take some tissues! I think practicing saying your script out loud will also help with the emotion of it.

      You could also say something about how you are sad to finish earlier than expected but you’re looking forward to starting back at uni in a more refreshed way, ready to focus on your studies, if you want a positive thing to say to people about the situation.

      1. I agree that quitting is completely fine.

        I made the suggestion because the way LW phrased it sounded like maybe she wanted to finish out the summer.

        1. Oh yes, I think it was a very good point and an option to consider! Particularly since the job has an end point, that might make it even easier to reduce the hours or change the days or something to make it work better for the LW.

  17. I can only disagree with one thing in the Captain’s response: Libraries are your friend all the time, skint or flush. 🙂

  18. I work in a business that employs students in the summer. (Not in a major way, we’re not talking movie theater/lifeguard/whatever, but a few every year). My romantic associate supervises a crop of (grad school) interns every summer. I can promise you that your boss:
    a) knows your reliability is starting to slip,
    b) is ready for this,
    c) isn’t judging you for it (you’re definitely not the flakiest student he’s seen, and the difference between “sincerely wants to do the job but is having some kind of issue” and “doesn’t give a shit” is usually very apparent)
    d) will not be put out by you quitting two weeks before you were going to anyway (you don’t hire students for the summer if long-term reliability is your goal), and
    e) will be happy to see you deal with the situation responsibly and take care of yourself.

  19. Ah, the old Rented Mule School of family interaction!

    It’s a rural/farm thing, in my experience. My mother remembers having to “look busy” every second her father might be around, who would put his hand on the television when he came home to make sure no one had been watching it in his absence. (Pro-tip: bag of frozen peas.)

    Heck, my husband, a commercial artist, still deals with certain relatives who har-har that he doesn’t WORK because he’s not hauling heavy things around.

    Okay, back when people made houses from sod, every hand counted between survival and starvation, but that has nothing to do with you. It’s just that particular culture adjusts very slowly when it comes to many things. So it has nothing to do with you.

    It’s a tough thing to deal with, especially at such a young age. Jedi Hugs if you want them. I am hoping that taking pressure off and getting more rest will help you feel better. Managing your condition is your job now. You can’t do anything else if that isn’t handled properly, or it will wear you down and nothing will be accomplished and you will feel twice as bad in many ways.

    So remember that Getting Better IS Your Job and be cheerful; maybe nothing will adjust your parent’s attitude, but you can adjust yours. There are people in your corner; you don’t know yet if your parents are or not. Dealing with other people’s pain is a tricky business and if they never had it modeled for them, they may be slow and rusty at it.

    AND if you are defensive and apologetic it won’t help — it will just convince them you do have something to hide or whatever. Just move on your own truth and let them see if, if they can.

  20. I just wanted to mention, given that LW mentioned money being a concern, if it’s the nature of the work causing the problem (having to stand for long hours, move boxes, etc) – LW, is there work that you could do from home (without straining your back) that would put some money into your bank account? I’ve been looking at freelance transcription (like TranscribeMe or Rev) and other online work to earn a bit extra towards my vacation fund and thought it might be an option for you, as well.
    If the problem with your current job was long hours sitting in front of a computer, then this probably wouldn’t work (unless you can set up an ad hoc sitting/standing desk that would help you manage the strain) but I thought it was worth mentioning since it would give you some money in your pocket before school starts.

  21. I’m an American, so I know this advice needs to be read through a Canadian lens — but PLEASE look into your rights regarding unemployment insurance and disability benefits BEFORE you quit your job.

    (I resigned voluntarily when my chronic, progressive condition required me to stop working, and discovered afterward that if I had been laid off due to absences or medical issues, I would have been eligible for unemployment insurance, and it probably wouldn’t have taken me two-and-a-half years of fighting to get disability benefits. I also worked for a small company, with bosses I liked, and didn’t want to create any hardship or bad feelings — but I should have asked them to lay me off/terminate my employment without prejudice, versus quitting on my own for medical reasons.)

    Hopefully, this isn’t the case in Canada, but it’s worth it to check, just in case.

    My daughter and I share the same genetic disorder (invisible unless I need to use my wheelchair), and for us, it’s been good to be able to support each other and share our experiences. The disease (Ehlers-Danlos Syndrome) hasn’t manifested the same way in both of us (which is normal, siblings and parents/children often have different symptoms, even though the diagnosis is the same), but there are enough similarities that we can handle it with love, mutual support, and a fair amount of black humor.

    However, *my* mother (who doesn’t have the disorder, we inherited it through my deceased father) is unsupportive, disbelieving, negative, and ableist. I really sympathize with how hard it can be to have a parent who thinks that needing rest means you’re “lazy,” and needing accommodations is being “difficult.”

    I’m hoping that your mother isn’t an absolute harpy like mine — the Captain’s scripts are very good, and I hope that you are able to end your employment gracefully, and that your return to school is happy and positive.

    My daughter just graduated, and I’m incredibly proud of her — it took her a couple of extra years to complete college, due to needing to take time off for serious cardiac issues and recovery, but she made it through school as a student with disabilities. We are wishing you the same success!! 🙂

    BTW, she found that it helps a LOT to talk to professors at the beginning of the year/semester about any accommodations you may need — we found that to be much more helpful than going through Student Disability Services, although it’s good to do both.

        1. Me too! And all the fun that goes along with it. XD I just got a new doctor so now I have to explain it to him, which is all the fun, but hopefully he’ll listen.

          (What’s infuriating is when I tell someone about it, and they turn around and claim that they have it just to get special treatment, like, even treatment I don’t ask for. Like, um, no, it doesn’t work that way and I resent you claiming it without actually having it. This just happened, so I’m still a little salty about it. I’m used to nobody knowing what it is or being skeptical, but this was… ARGH.)

          1. WOW, that is . . . special. I’ve absolutely had friends get *diagnosed* with EDS after knowing me, because I talk about it and am very open about what living with the disease is like — but I haven’t encountered anyone who is faking it, just people who finally knew to bring it up to their own doctor/s.

            *attempts to fistbump you and @Kai Lowell without dislocating any fingers* ❤

          2. Right? Like… if you’ve got it, total sympathy, but if you don’t… don’t fake it. You don’t have the pain and uncertainty we live with every day, or the less well-known symptoms to deal with, and it’s just gross to fake it for “special treatment”.

  22. Oh! About Mother having the same condition that you have-

    My mother and I both get migraines. We get very different migraines. Hers are infrequent and include sensitivity to light and nausea. Mine are more frequent, and always include disorientation and hallucinations. I am not sensitive to light, and am only rarely nauseated. I am in my 50s and have had my sort of migraine since puberty (or earlier). She still offers me eye covers and anti nausea medication. I remind her that’s not my issue, and take a pain pill.

    I tell this long story to show my sympathy for the bind you’re in, and to indicate that even if your mother never really understands that the condition you both have hits you differently, you will probably (eventually) be able to tolerate her off putting ways.

    And one more thing: I found the forums at neurotalk.net helpful and interesting.

    This is the chronic pain forum:

    http://www.neurotalk.org/forum10/?s=413c63f479222ea409e0b0a4dfa86b14

    1. My mother and I both have cryptic tonsils (gross out warning if you go look it up, and I won’t go into the details here). Hers bother her about three times a month, and it’s just a small bother. Mine bothered me several times a week, and painfully so, and give me tonsillitis more than once, and about a year ago I had my tonsils removed. My mother was shocked that I was taking them out for such a small issue, until I explained that her small issue was my very big issue. Same diagnosis does NOT means same symptoms and severity of issues.
      Sadly, knowing this doesn’t translate to parents knowing this. Jedi hugs if you want them while you sort how out to deal with this.

  23. More jedi hugs and virtual kittens from a chronic pain pal.

    Have you looked into mindfulness? It’s a meditation technique created to help people with chronic pain who don’t get relief from drugs. Bonus: in addition to helping deal with pain, it has all the usual benefits of meditation.

    1. I know this is kindly meant and I am glad it works for you. However, “how to manage pain” suggestions are off-topic unless the LW asks for those, and even then these are better handled in the forums.

      Personally, I have tried mindfulness. It’s a shitshow that only adds anxiety on top the pain. Hearing the suggestion to try it from someone who is not my medical provider & has no idea what is actually going on medically? The opposite of helpful.

      1. “It’s a shitshow that only adds anxiety on top the pain.”

        😦 jedi hugs! it sucks when one person’s miracle solution is another person’s traumatic horror.

        my inner mad scientist is really, really curious now. you’re not the first person I’ve heard from who’s had that reaction, and I’ve had both good and bad experiences myself… but there’s probably no appropriate way to look into what the difference is and whether there’s a way to ensure a good experience, is there?

        1. I’m sure that researchers could get some useful data wrt this issue if they actually, you know, *asked* people about their experiences with trying mindfulness meditation and *actually listening* to people when they describe negative or mixed experiences, rather than just engaging with the positive experiences.
          /cynical

        2. From someone who’s had horrendous reactions to meditating and subsequently researched it a little, there are several potential problem areas.

          One is with the styles of meditation which rely on “emptying” your mind and/or dissolving mental boundaries, which aim to achieve a sense of oneness with the universe. There is an actual scientific basis to being able to do this – the meditation reduces activity in the brain area which distinguishes ‘self’ from ‘other’. But if you are seriously depressed or suicidal it can worsen the rumination and can make you more suicidal (been there, done that). If done for prolonged periods in sensorily-deprived settings eg 10 day Vipassana silent retreats where there is no talking and no eye contact, it can induce psychosis-like symptoms which in the worst cases can last for years.

          The other is with styles of meditation which develop skills of mindfully attending to physical and mental sensation and activity – if you have any sort of history of psychological trauma and your brain is handling that by repressing/dissociating/avoiding, the process of meditating drops all your carefully erected mental barriers, and you can end up with flashbacks. These are not necessarily the visual/sensory flashbacks that people commonly associate with PTSD, but may be purely emotional and difficult to link to a specific trauma, but can be EXTREMELY distressing and overwhelming. I frequently ended up crying my eyes out in 45 minute meditation classes, and when I attempted a single day silent retreat as part of a MIndfulness Based Stress Reduction (MBSR) course I ended up crying for several hours straight, then had stress-induced vomiting for the entire night after that and ended up too sick to go to work for 2 days (having previously taken sick days only twice in the last 10 years). I was really really pissed off that meditation was presented to me as a risk-free activity when these sort of reactions, while uncommon, are well-documented. In theory, you can learn to “sit with” these intense emotions, but it generally requires working with someone who is trained in both psychotherapy and meditation, and learning emotional regulation skills beforehand.

          If you want more information, try an internet search on “trauma-informed meditation”, and “adverse reactions to meditation”.

          1. THIS. For some reason when my depression got really bad, everyone seemed think yoga would be a great way to deal with it! It was most decidedly NOT, I would cry through every yoga class, because as it turns out, yoga does sweet fuck-all for severely chemically imbalanced brains!

        3. I’ve tried mindfulness / meditation practice that focused (in part) on paying attention to the body. Basic body-scanning exercises, developing an awareness of self, etc.

          The thing is – my baseline pain levels are terrible. I burst into tears immediately and was in horrific amounts of pain for about two days following. My coping mechanisms normally include some amounts of dissociation / ignoring what’s going on, and sometimes (such as when the pain is not usefully informative) that’s okay! I prefer that to existing in utter agony!

          Especially in a group setting, it can be a lot to deal with.

          1. ^ This. Sometimes stuff hurts because I’ve damaged it. That, I pay attention to. But sometimes, stuff hurts for no reason, and keeps hurting even though it makes no sense and serves no purpose. I couldn’t do anything if I didn’t ignore most of it. This is also the reason I hate giving status reports to people who ask how I am and think they want the real answer — it forces me to pay attention to things I have deliberately shoved out of my conscious awareness.

            Mindfulness also does not help when I just feel emotionally terrible. I’m pretty observant at baseline. Observing more things just makes me feel all the more tiny and disconnected from everything. It’s nice, in a way, to understand that the world will not end if I sit down and don’t do stuff for a while. But it also means that the world will go on without me, whether I am capable of going with it or not. Not always the best realization when you’re blue.

          2. [I’m replying to several comments here, I can’t make sense of the reply buttons today.]

            Shitty. 😦 I recently discovered there exists a mental state that helps with my muscle problems… but it’s really hard to reach, and one of the prerequisites is processing all that backlogged sensory data. There’s a lot of pain there; I want to *avoid* the pain, not run straight into it!

            I’ve not been able to do group things, and I haven’t signed up for any retreats for fear their rules would conflict with my needs in traumatic ways. Even books I have to approach gently and indirectly; the slightest hint of pressure can trigger a meltdown. Sometimes I need a locked door between myself and all other life before I can relax enough to safely meditate. Today even that wasn’t enough – I think I need a good gym session instead.

            And yoga doesn’t work for me either – I tried it, and my body felt good afterwards, but every time it was too hard on my mind. Plus the space we were in had serious air-quality issues :/ and of course I was the only one affected.

            And *fuck* status reports, eh? Nothing antagonizes a headache like hearing “do you still have a headache?” every fucking day. Or someone calling you on the phone to drill you about your *noise* sensitivity that’s none of their fucking business in the first place.

      2. You’re not the only one. Meditation is so not something I can do, and trying just ends badly for everyone involved, as I found out the hard way. Nice to know I’m not alone in that (although obviously I wish it didn’t suck for you).

      3. Sorry. That’s why I asked, instead of “you should,” but I failed to register that she hadn’t asked in the first place, so how I presented it is moot.

        crawling away

      4. “It’s a shitshow that only adds anxiety on top the pain.”

        Oh thank goodness it’s not just me.

      5. Yes, yes yes. Mindfulness and/or body scans, in group settings by facilitators who are not aware of complex trauma and dissociation, may be very damaging.experiences. For severe trauma survivors, it can trigger every kind of flashback. And many well meaning and well educated clinicians have no clue how to help someone having a flashback, no matter the type or a severely dissociated person become grounded (i.e. oriented completely in the current time and space). These techniques literally can be playing with fire, and participants may not even know. Until it happens to them.

  24. First time commenter!
    I just wanted to say thank you for this advice- I am also in this situation, but it is open ended. Chronic pain has been really hard but the disbelief and odd “ignore it and it’ll go away” stuff has been worse. It is hard to feel like you’re a disappointment and not living up to “potential” when in reality taking care of yourself and achieving the things that matter to you are a huge victory.

    *fistbump to LW* you are putting your needs first. You are smart and strong. I recently decided to start using a cane, in the face of much parental doubt- I cited my doctor (a lie) and honestly it’s brilliant. I can’t believe I let other people’s expectations stop me from doing something that helped me so much.

    And thanks Captain. This entire blog has helped me tremendously and this post in particular. Not only giving me some good words, but confirming that I have been dealing with this surprisingly well.
    Good luck LW!

    1. I have a folding cane that I’ll put in my backpack whenever I’m going to walk a lot, and it helps so much to be able to use it when I need it. Doubters gonna doubt, but that’s on them. 🙂

      1. I went with the stealth cane – bought myself a nice full-size umbrella I can lean on if need be. 🙂 as a bonus, it turned out to be a really good umbrella too!

        the folding cane sounds really neat, though… I’ll have to look into that…

        1. I got mine from Amazon, and it wasn’t terribly expensive. I do wish I’d managed to keep hold of the bag it came with, but as it is I just wrap the wrist strap around it when I fold it up. 🙂

      2. ChimeraCat, I’ve thought about getting a folding cane. I worry that it will collapse when I put weight on it. What did you look for to make sure you got a good one/

        1. The thing about folding canes is that they’re held together with elastic inside. Once they’re assembled, there’s no way for it to collapse; you have to pull the pieces apart to fold it.

    2. My doc cut a cane to size fir me, and then told me not to use it. Long months of painfully twisting off-balance, grabbing onto to things and tottering into people on the bus before the light dawned. Now it’s obvious to anyone why I’m still in the crosswalk, and why I don’t run. I’m given a seat on the bus instead of praying I don’t fall. Also, even an idiot can see I’m now lightly armed.

      1. Absolutely- I got the folding cane for stealth but it’s actually a good signal for other people to be a bit more careful. It’s at least slightly changed the tone of the street harassment 😉

        I do think the idea that I have a “weapon” is comforting. I’d never use it, but I certainly have more of a strut in my step!

        My worry now is that I’m having surgery that may theoretically fix some of my pain- I’m under a lot of pressure to “get better” “get active” and give up the stick ASAP. Now, I’ve had the surgery twice before and for various reasons it didn’t work, so I’m naturally cautious. My “one day at a time/let’s see how this goes” approach is being met with pushing to be better, stop the painkillers etc. Haven’t even had the op yet and I’m feeling sorry for future me and the arguments I’ll be having about knowing what’s best for myself.

        I’m planning on using some of the phrases in this post and then leaving the room (with the help of my trusty stick!) when I need to cool off.

        It’s just super sad when your nearest and dearest can’t hear your needs over their own anxieties about your health.

  25. Hey LW, I know you’ve seen advice on disability services, but I have another reason for you to check them out: Student Loans. Now, I can only tell you how this is working in BC, for me specifically (mental illness, but this is for all disabilities) but I assume there is something like it across the country, at least for Federal financial aid.

    There’s special paperwork (filled in by your doctor), and a process for getting recognized as a student with disabilities (this is different than person with disabilities – it’s through a different provincial department), with the requirement being that your particular condition interferes with your schooling in some way (say..chronic pain causing exhaustion and fatigue). The feds (and maybe your province, again this is the BC experience) can supply a certain amount in grant money to offset student loans, and provide technical aid (there are even official letters for profs, that detail accommodations needed, without revealing your particular reasons).

    There are hoops to jump through, and this may not help until next semester, but when you have the energy it could be something to look into. It’s there for you, to help offset some of those spoons you may lack.

    Whether you look into this or not, I hope the couple week break before school rejuvenates you for the coming year, and this internet stranger who has spent her life trying to “try her way out of it” is proud that you’re aware of what your body needs, and that you’re listening to it. It’s oneof the most important things I’ve learned.

  26. Oh mate. I’m with you on the chronic pain and people dismissing the effect it has on you and what you can do.

    Fortunately (unfortunately?) you’re not alone. Medicos generally suck with pain management – there just isn’t a lot of info available to them. It’s worse with women even though we tend to have higher pain thresholds!

    I’m nth-ing the yes to rests and breaks and day time naps and telling people to eff off (aloud or in your head) when they hassle you about it.

    All the loves (if you want them)!

    #fibromyalgia

  27. Slightly OT, but reading “btw a good parent answer here is a variation of “I’m not disappointed in you! I could never be disappointed in you!” made me realize some things about my upbringing and why I am constantly terrified of disappointing anyone.

    Back on-topic, LW, I too have chronic pain and depression, and I send you all the sympathy in the world. I think you’re making a good decision to rest and recover before returning to school. The Captain’s suggestions for things to do are good, but even if they don’t work with your parents, be secure in knowing that you’re making a smart and thoughtful decision here.

  28. “Hopefully they’ll get it – btw a good parent answer here is a variation of “I’m not disappointed in you! I could never be disappointed in you! I’ve just been worried, for all the same reasons that you are. It’s really hard for me to see you in so much pain. I’m sorry if that’s been coming at you like disappointment when it’s the opposite of what I am feeling.””

    Does this mean…that “I’m so disappointed in you,” wasn’t a staple of everyone’s childhood, to be busted out whenever I didn’t meet whatever new expectation my mum had dreamed up? And then rounded out with “I only expect a lot of you because *I care*” ..?

    LW, I’m sorry you’re struggling with chronic pain and that you don’t feel your parents will be supportive and understanding. As someone whose mum refuses to believe that I need glasses, even after being told – by the optometrist – that I actually have quite a hefty prescription, I’m telling you that sometimes you have to just forge ahead with what’s best for you in the face of disapproval. After years of trying to just “look harder” (wtf) I can say that getting what I needed for my wellbeing is worth 1,000 snide comments!

  29. Just wanted to chime in with a suggestion for a possible slight variation on the resignation. I tend to be a bit more gushy in resignation email/letters, e.g. throwing in a few ‘really’s etc for emotional emphasis (I’ll really miss working with you, I am so grateful, I’m so sorry for the inconvenience, I’ve massively enjoyed working with you); front-loading the sentence announcing my resignation with ‘unfortunately’ or ‘sadly’; and explicitly thanking them for the opportunity (as well as any extra accommodation). Some of this is cultural variation (I’m British and so to me the Captain’s letter, while perfectly professional and conveying the same sentiments as I would, comes across as a little blunt in tone), but also for me, I find it helps with the anxiety of the subsequent conversation; by being a bit gushy, I know the letter has done some of the emotional work for me by strongly conveying feelings of gratitude and sadness at parting, so that then I don’t get into an anxiety spiral about justifying my resignation or reassuring the boss in person – it’s already been pre-empted. Hopefully it also makes the boss feel good by reading your letter (i.e. appreciated and that you saw this job as a positive thing) so that they get a nice feeling of validation from the letter and don’t have to come to try to find it from you in an awkward conversation. If a conversation does happen anyway, I tend to just repeat what I’ve already said in the letter which means I’m not left awkwardly trying to come up with new words, or having to process emotions I haven’t worked through already in private.

    Btw, this is not for one minute about apologising for your condition or your situation, but more about greasing the wheels for a slightly easier/less awkward exit for yourself. It also doesn’t hurt to have them think fondly of you if you might be coming to them for a reference or re-hire down the line!

  30. I am a mother of someone with severe pain caused at least partly by a genetic condition that I share. She has much worse problems than I do, but I do at times have debilitating pain. We went through a time of great difficulty where I didn’t manage to express my concerns well. But one thing that she started doing that helps immensely is to recognize times when I am in pain and overwhelmed and offer whatever support she can. On those days she makes an extra effort to find some way to take a little stress from me. She shouldn’t have to, but, oh, does it ever make a difference in my ability to support her needs! Just some effort in supporting my pain means so much!

  31. LW, I really don’t have anything to add to the Captain’s advice – it is excellent.

    I just want to tell you to please take care of yourself, and to offer Jedi hugs if you would like them. Chronic pain is no bueno.

  32. “I was raised with a “If you are too sick to go to school or work you are too sick to do literally anything that might give you pleasure” mentality. When I got older and I got dx’d with some mental health conditions (and lately when I’m dealing with some chronic mobility & pain issues) it’s been really effing hard to get the voice out of my head that says I don’t deserve to do anything enjoyable because I haven’t “earned” it. ”

    *stunned look*

    ………….*oh*.

  33. I don’t know what province you’re in, but contact your provincial health association and ask what it available for treatment where you’re living now. You may have more available to you than you know.
    Can you ask your boss if it’s possible to work on a part-time basis?

  34. Oh, man, LW, as someone who had three surgeries this summer, I feel your pain. My parents are supportive, but my mom has cancer and sometimes we occasionally get roped into a “I’m in pain!” “I have cancer!” game, like that game where you put your hand on top of someone’s, and then they put their hand on top of yours, and so on and so forth. The only way to win is to take your hand out. My mom and I have taken to saying “I can sympathize with you” when we’re comparing notes on sickness. That way, we don’t get competitive and can actually help each other out. It’s not weak to need a break. You want to be well rested and on top of your game when you go back to college, which is more important long term than a summer job.

  35. Random crying advice. You can somewhat stop tears by pinching the bridge of your nose. It won’t stop intense sobbing or anything, but I’ve successfully used it to turn tears into just some slight welling in my eyes. Practice in the mirror, but it really doesn’t look as bad as you think, especially if you turn or into a nose scratch or glasses readjustment.

    But I do have to agree with the others that said it’s okay to cry. Plenty of people cry when they resign for plenty of reasons. You won’t be the first and you won’t be the last person to cry in front of your boss.

    1. Blinking rapidly or looking up can also help stop tears, but I agree that it’s okay as well as understandable if you cry.

  36. Given that your boss has been a good boss, I’d definitely think about adding a personal note of thanks to your resignation letter– not least because it’s always good to leave a job on good terms. Maybe in a follow-up email or in person, if you decide to do it that way.

    Maybe something along the lines of, “I wanted to say how much I’ve appreciated how understanding you’ve been, and how much I’ve valued being able to work at [job] for this long.”

    Recognition is always appreciated, and you may want to use them as a reference later.

  37. LW, just wanted to invite you to #painsomnia Twitter as well as basically anywhere you can talk to other people who understand what you’re dealing with. (Painsomnia Twitter is chronic pain people up chatting when they can’t sleep because pain, just in case that wasn’t clear, but we are Legion and all over the internet.) it helps to know you’re not alone. (You’re not, and I also had to quit some summer jobs because pain.fistbump.)

    Also, I don’t know if you are familiar with the social model of disability, but it has really helped me when dealing with family bullshit. Social model basically says that if society were designed with more accommodations, disabilities wouldn’t be so hard. (There is a grey area of “but pain still sucks and medicine for that would be nice but that could be a PhD thesis so anyway.)

    For example, if chairs at conferences were not hard metal back murderers, it would be easier for more people to participate. If all TV was close captioned for Deaf/HoH. If crosswalks all had curb cuts and audible signals that it was time to walk. Etc.

    So um sorry for the screed, but what I’m saying is that when my own inherited Puritanical ableist brain weasels go, “why are you lazing about? Blah blah bootstraps!” Or whatever, one thing I shout back at them is “well maybe if society were more inclusive and we actually had invented decent pain medication, I would work that monies job, but right now my job is taking care of myself.”

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