#1111: How do I get people to stop asking me about the future?

Hi Captain,

I have a problem with knowing what to say when people ask about my life.

For some background, I am 25, have completed a Bachelors degree, but I have ended up living with my parents again. Originally I was only going to live with my parents for a summer before finding a place of my own to live. Unfortunately, I have chronic pain and it has gotten so bad that I can not work. Not being able to work in a problem for several reasons, though the financial side is being taken care of as I am receiving aid while I await an official diagnosis. My main problem is that all of my peers are moving on from school into their careers and I keep getting asked when I will move on.

I know that mostly everyone is coming from a good place when they ask me what my life plans are, but I’m having trouble coming up with a short, polite way of saying “I am terrified for the future so I think about it as little as possible and instead focus on trying to figure out how to live my daily life with limited mobility”. Another issue is that the disease the doctors think I might have tends to be thought of as causing mild pain even though it can be completely debilitating. I am at my wits end trying to shut these conversations down and it’s to the point where I avoid talking to people and I almost cry when they do start asking me things. Any ideas on things I can say?


Pained and Tired

Hi Pained & Tired,

I get a lot of questions like this: “How can I preemptively get people to stop doing an incredibly common/but also incredibly annoying behavior?” The answer is always: You probably can’t. You can’t get other people to do anything. What you can do is change how you react to it so that there’s less friction for you.

People are always going to ask you about the future, what your plans are, what’s new in your life, what the next steps are, when that dissertation will be finished, etc. They just are.

That doesn’t mean you owe them a “satisfying” answer (in United States culture that would be a short & optimistic answer that completes the social circuit, like, “How are you?” “Good, and you?” “Great!”). We in the Etiquette Industrial Complex can point out reasons that seemingly innocuous “small talk” questions might be really upsetting to certain people all the livelong day, and yet people who are interested in how you are doing and what you might be doing next are still going to ask you about it. You can’t control what other people will do, so can you get some more control over how you react and interact?

Right now, you’re in pain. You’re ashamed because you see yourself as falling behind your peers. You’re not where you wanted to be at this stage of your life. You’re adjusting to a new normal, trying to figure out what that looks like for you. You’re exhausted and scared from being in so much pain. You know that these questions aren’t designed deliberately to torture you and that they are coming from a good place, so the final step here is about finding a way to answer them that doesn’t cause you so much anxiety and shame.

May I suggest short, honest answers followed by a question?

  • “I’d love to get my own place and start working soon, but until I have a diagnosis and a treatment plan in place, I’m pretty grateful that my parents can put me up. What’s new with you?” 
  • “I wish I had better news, but I’m still waiting on a definite diagnosis. Are you doing anything good this summer?” 
  • “Aw, thanks for asking, but I’d rather talk about anything but that. But you, what are you working on lately?” 
  • “It’s really hard for me to think about the future right now, I’m just trying to get through the day with as little pain as possible. Thanks for asking, though. Can we talk about what you’re up to?” 
  • “I wish I had a fun answer to that, but I’m having some very serious and very boring health issues and living with my parents while we figure everything out. Thanks for asking, though. Can we talk about you? Anything new and exciting?” 
  • “Yikes, that’s a kind question, but honestly it makes me want to cry. Things are still really up in the air for me, and I’m pretty stressed about it. Can we talk about something else? What are you doing this weekend?” 

The question part at the end is essential. By adding this, you are giving the person a safe, face-saving conversational out that lets them follow your lead. Without it, you feel shame for being probed about an uncertain future, and they also feel social shame for inadvertently upsetting you, and unfortunately it is possible to create an ouroboros of shame that can drown the whole conversation. Asking them a question that gives them a safe subject change can be like throwing them a life preserver.

There’s also a double-bind for the askers, especially askers who know that all is not well with you. If they ask about it, they risk being intrusive or reminding you of upsetting stuff. If they don’t ask about it because they don’t have exactly the right words or they’re afraid of upsetting you, it seems like they don’t care. With really close friends I think you can set boundaries, like, “please don’t ask me about TROUBLING THING unless I bring it first up please,” but with acquaintances/colleagues/more distant friends or family I think it’s a good habit to look at “asking about x” as a way of “showing interest and care about x” (unless you know for a fact the person is some kind of nosy asshole).

You can also shift the conversation to other things you are doing, as in:

Person Who Hasn’t Seen You In A While: “Hey, good to see you! What’s new? Where are you working these days?” 

You: “Good to see you too! My illness is keeping me at home these days, so I don’t have any career updates for you, but I did just read the greatest book, let me tell you all about it…” 

You’ll be able to tell a lot about people from how they handle your answers and your suggested subject changes. You’ll be surprised how many people will be grateful to follow your lead in a culture that doesn’t have a lot of language for talking directly and honestly about illness, hardship, and other vulnerable things. You’ll also probably be surprised by how many people will confide in you about their own anxieties about the future and health and other vulnerable stuff if you give them the opening to be honest in return. That can be exhausting and weird in its own right, but it can also be a reminder that a lot of people are putting a brave face on things just to get through the day.

Yeah, you will probably encounter people who insist on “cheering you up,” people who can’t stop reassuring you that “it can’t be that bad,” people who won’t let it go and insist on hearing every medical detail, and people who drown you in annoying advice about yoga and supplements and some tangentially related thing they scrolled by during their daily poop. You’re allowed to avoid well-meaning people if they annoy you, you’re allowed to give them the bare minimum of information and politeness. You don’t owe anyone a happy answer to their questions, you don’t owe them having the expected amount of pain for your possible diagnosis, you don’t owe anyone living your life on a certain schedule. You also don’t have to avoid all conversation until you have some upbeat comfortable story to tell about your life.

Hopefully these scripts can help you navigate this very routine part of social interaction with much less anxiety. I hope you get answers and a workable treatment plan very soon.


96 thoughts on “#1111: How do I get people to stop asking me about the future?

  1. Thanks for this question and very thoughtful answer. I’m also feeling with chronic pain and fatigue and while not in a turning point moment like Pained & Tired, still get questions from well meaning (read nosey) folk and these are useful scripts. Good luck to you Pained. I’ve found subreddits for my condition very helpful as places to vent, seek advice, and generally lurk and feel part of a group. Take care and do you.

    1. There’s also a site called Chronicbabe that has forums and community targeted for young women with chronic illness. Not knowing the Letter Writer’s gender I didn’t plug it in the OP, but it’s there for readers who might find it useful.

  2. May I also suggest keeping a list of follow up question ideas (Captain had very good suggestions), or things that you’ve been doing ideas?

    They don’t have to be recent (you could have read this amazing book, watched a movie, learned something interesting, discovered a blog, etc)

    I tend to be bad at small talk and coming up with ideas on the spot and this has helped me.

    If they ignore your question inviting them to change the subject, and follow up, i would repeat another of Captain’s scripts using the same pattern (one sentence plus subject change question). If they follow up with yoga/supplements/etc … there are several Captain Awkward threads about this, and I’ve found that “thanks, I’ll think about that (even if your thought is WTF NO) or “thanks, I’ve heard that a lot of people like that” or “thanks, I’ll bring that up to my doctor”. Deflection and apparently taking on what they’re saying helped me keep them from digging in to extol the magical healing virtues of whatever and make me agree to go to yoga with them/buy their essential oils/etc.

    I’ve been there with the unknown diagnosis and debilitating pain in the meantime. I’m sorry this is happening to you. I hope you get resolution soon.

    1. As a longtime veteran of awkward questions around work which I don’t have, I strongly second this recommendation of talking about what you are actually doing/ have been doing/ are planning to do – preferably in terms of things you enjoy – even if it seems relatively trivial. A lot of why people ask questions about work (or education with younger adults) isn’t because folk are genuinely fascinated in other people’s working lives, but that for most people, these are easy conversations. However, if you’re filling your time with crafts, games, books, TV boxsets or whatever, these are all things people comfortably talk about. Meanwhile, what you’re doing for fun – even if that is very limited right now – is far more representative of who you are as a person than a health situation about which you’ve got no choice.

      Personally, I avoid even referencing ill health unless I have to, because people do want (or feel obliged, I’m not sure) to follow that up with a conversation about illness, which tends to be deeply tedious and occasionally offensive. In this situation I would prefer to say, “Things are up in the air at the moment.” unless I was with someone I could trust not to start lecturing me about the benefits of diet of exclusively purple-coloured food or whatever. That’s just my preference but exercising this preference has not proved very difficult over the years – it’s a very rare obnoxious person who pushes for more details, especially once you moved on to the conversation you want to have.

      Also second best wishes for clear answers and appropriate treatment as soon as possible.

      1. THIS.

        It shouldn’t be too hard to politely shut down future talk and refocus on something one of you is doing now. Like “you know, I’m just taking it one day at a time” or even simpler “I don’t know [what my future plans are]” followed by a “but I’m really into [TV show] right now” or “I just picked up [new hobby] and am really enjoying it” or “but I’m really curious about how things are going with your [job, significant other, kids, hobby, etc]”

        Some people just aren’t planners, so saying you’re not sure about the future or haven’t thought about it shouldn’t be too weird if you want to skip the medical details. And using the Captain’s strategy or changing the subject should help deflect people who want to ask/harrass you more about it.

        1. I second the deflection technique described here! It seems like it wouldn’t work or it would feel unnatural in conversation, but when I was unemployed I did this all the time (mainly because talking about job applications is so boring and I’m the one doing them). Also because I really did fill my time with trying new hobbies, mainly to keep my brain busy and to keep my stress levels down! So it would always go–

          Them: How is the job hunt?
          Me: Oh well, you know how it is. In the meantime, I’ve taken up knitting/learning German/wtv! It’s been so nice to learn something new, and working with my hands is a cool change.
          Them: Oh wow, so you’re just learning it from the internet or…?

          And the conversation naturally moves on from there. I get that it’s hard to not just pour out the shame or let it choke you up, but it gets easier the more you practice saying a neutral, true statement and moving things along. No one is going to be shocked you don’t have your life all sorted right now, honestly.

          1. I’m another person who uses these techniques. I do some volunteer work and have some hobbies, so those are what i talk about when people ask me ‘what do you do/what’s new for you?’, and we can talk about that instead of work. If it’s feasible for you at this stage, volunteer work is great for giving you an ‘identity’ when asked the ‘what do you do? ‘ question, which is really all people want. In addition, people think you’re really altruistic 🙂

            In my experience, the captain’s suggestion of short answer followed by a deflection has been very effective for topics i don’t want to talk about. Most people don’t want to probe about unpleasant topics, and will happily take the conversational cue and talk about the next topic you bring up. For the rare person who doesn’t do this, I will just exit the conversation, sometimes by saying ‘i don’t want to talk about this’, and physically moving.

          2. Re: volunteer work, there’s also opportunities that don’t have to involve going anywhere or a set schedule—eg, a chronically ill person I know has transcribed old botanical documents for the Smithsonian on and off. This isn’t to say that everyone should find a way to volunteer—if it’s not in the cards for you, it’s just not—but that there are often access needs that can be met with options that aren’t obvious to most people.

      2. My reasons for still being in school and living with my dad at 35 are mostly mental illness stuff, and I definitely don’t want to get into that with anyone but close friends and my therapist. “I haven’t quite figured it out yet,” has been my go to response about life plan questions, and then an attempt to change the subject. So far only my sister has refused to be deflected, but I have learned not to expect basic decency from her.

        1. I meant this to be a standalone comment rather than a reply. WordPress loves to mess with me this way.

    2. Having a list–yes, an actual list!–of things I’ve read/seen/done lately has been really helpful for me as well! One way my anxiety manifests is that it basically shuts down the search engine part of my brain when I’m in real-time conversations and makes it difficult for me to come up with answers to questions like “Have you read any good books lately?” or the dreaded, “So what have you been up to lately?” So I actually keep a list of things I can enthuse about–movies I’ve seen and would enjoy discussing, this funny thing I read about online, the new recipe I tried recently, my most recent crochet project. If I know I’m going to be doing social things, I’ll take a quick look at the list before meeting up, or I’ll save face in the moment by saying something like, “I read a cool book last week, gimme a second to check the author here in my planner….” I also make lists to remind myself of good subject changes for people who tend to steer toward the on-ramp for the Highway of Intrusive Questions and then like to take either Exit 1 toward the Avenue of Unwelcome Advice or Exit 2 toward the Boulevard of Judgment and Shaming.

      The list works really well for both low-anxiety interactions with people who are likely to be perfectly pleasant, and also for times when I’m girding my loins for a potentially fraught interaction and want to be sure I have plenty of subject changes on hand. It also has the benefit of helping me to remember things I wanted to discuss with people I am actually close to but don’t see all the time (like, if I want to remember to tell Molly that I made that recipe she gave me for treacle tart and it was awesome, or to thank Remus for recommending that book I read last month, or to ask Nymphadora if she’s seen The Blackcoat’s Daughter and can we have a spoilery discussion about it).

      For what it’s worth, it was this was really useful when I needed to have subject changes on hand during a time when I was trying to get a diagnosis of a mysterious new malady, and people who knew about that wanted to ask ALL THE QUESTIONS or provide me with long lectures about how THEIR doctors would definitely have diagnosed the problem already. I have some family members who can be lovely, but who sometimes show their concern by saying things like, “Maybe it is an ectopic pregnancy! When did you last have sex?” (I WISH I were kidding…)

      Best of luck to you, LW. I hope your healthcare pros are able to find a treatment plan that works for you. Jedi hugs if you want them.

  3. I have fibromyalgia and depression and anxiety and all the features of those things that make life suck and figuring out how I will get through the next hour difficult sometimes.

    My favorite answer to these types of questions, especially from people who will NOT.LET.IT.GO. are insanely detailed and monologuing diatribes on whatever obnoxious daily details come to mind.

    For example : despite meaning well, my dad would NOT let it go about when I was going to go back to school. I had just popped out a kid and was not in the mood to remind him that he was not allowed to bring it up to me anymore.

    So when he asked how I was doing and followed up immediately with school stuff, I ignored the school questions and talked to him for 30 min about the baby’s poop and the difficulty in keeping diapers organized. I would not let him hang up or change the subject.

    When I ran out of things to say about poop, I started on about the difficulty of keeping the pantry organized.

    He got the message.

    For less close relationships, I have put all the time I have spent stuck on the couch in too much pain to talk watching superhero movies to good use.

    I can monologue about the cinematic versus the comic book version of most of the major movies for a good two hours. Two hours for each character.

    So when someone asks how I am and what I’m doing, if I don’t want to talk about me, I will mention that I have been watching MOVIE, and did you know that all of this stuff is a reference to this thing in the comic??

    It can help bury the “how are you” part of the conversation that social interactions seem to dictate without having to get into details about anything personal.

    YMMV, of course, but it is a fun nuclear option to shut down the uncomfortable part of any conversation.

    1. I actually laughed out loud imagining the conversation with your Dad. Like every break where he thought he could be done now–“But *THEN* it turns out by that time the poop had just melted, because it’s 90 degrees here–!” Ha. Good for you!

      I think sometimes people don’t mean to lack empathy, as in, “I know how you feel when you get stuck in a conversation you hate,” but then all of a sudden they have that experience and it’s like, “Oh! I was being a jerk this whole time.” Like a jerk-piphany.

      1. My Dad had a jerk-piphany after a failed radiation treatment left him with severe chronic pain — realizing just how draining/debilitating it is, and how much it impacts daily activities, caused him to actually APOLOGIZE for how badly he’d treated me over my disabling chronic illness.

        That conversation was a pivot point in our relationship, and we were able to be very close for the last 7 years of his life.

        Not that I would ever have wished the pain on him… but I’m grateful that the change in perspective allowed us to love and support each other as adults.

    2. I love this! I have an injury that has kept me out of work for more or less two months at this point, and I can discourse at length about the shaving habits and philosophies of various Star Wars characters, in the form of what might have been a listicle at The Toast of yore. Much more fun than indulging people who are concern-trolling (or asking well-meaning but stress-provoking questions).

      1. :/ But Telemarketers aren’t being personal jerks, they just have a shitty job. It’s kinder all around to hang up on them ASAP, freeing up your own time as well.

        Not to derail but shoving people who are stuck in a notoriously crappy job (phone service) on the same tier as people choosing to be asses on a social level doesn’t sit right.

        1. Yep, I’ve known several people who have worked at the place here in town and they are treated and paid horribly. People don’t take a job as a telemarketer because they’ve got tons of other options.

          1. Adding: I have over a decade of retail experience and I wouldn’t consider an outbound call center unless it was literally a question of life and death.

  4. something they “scrolled by during their daily poop” Oh my gosh this image is going to get me through a LOT of politics-related convos in the future!

    LW, we tend to poke fun of cliched topics like the weather, the latest sports score, or cute kid stories. But if you’re not good at thinking on the spot, making a quick, “Oh nothing new with me right now. I’m just enjoying the fact that the sun is finally out!” or “Nothing new since the last time we talked, except that I’m hearbroken that FAvorite Team missed out on the playoffs” or something like that is a super easy topic changer and easy to remember when you’re on the spot. Even if their response is, “Oh I don’t follow football” you’ve just managed to change the topic far, far away from that which you don’t care to discuss. Good luck!

    1. Seconding this – a non-answer followed by bland small talk is very acceptable especially with a passing acquaintance.

      I’m a regular at my gym and most of the coaches say “Hey how are you?” when I get in. The non-answer “Hey, how are you?” right back is acceptable social lubricant! No one actually cares. Obviously this is not an exact parallel, but in cases where people are just making small talk, you can sometimes just straight up ignore their actual question and just volley some small talk back.

      “Hey it’s been a while! Do you know when you’re moving out yet?”
      “Hey it has been a while! How’s Spouse/A Sports Team/New City?”

      1. This! Slight variant:

        “Hey it’s been a while! Career question?”
        “It HAS been a while! How’s innocuous thing?”

        If the social nicety has two parts, you are welcome to only answer, respond to, or echo back one of them. People regularly do this by accident even.

        1. This is a good general social tip/hack. “I *know*! I don’t think I’ve seen you since Mary’s axe-throwing party last fall! Did you ever hear whether that one Jake somehow got lodged halfway up the tree fell out yet?”

          You will generally get three types of responses to evasions like this:

          – People who were only asking about Part B to make requisite social noise and won’t even notice you focusing on Part A instead,

          – Savvier folks who may think ‘Whoops, Part B might be a touchy subject’ and make a mental note to be more judicious about bringing it up in the future, and

          – Those who’ll ignore your redirect and double down. “No, *seriously*, what’s going on with Part B?”

          With the last group, you can either try a more direct shutdown *once* (‘Eh, it’s going. I’d just as soon not talk about it. CUE SUBJECT CHANGE.’), or skip directly to placing them in the category of minimal socializing.

    2. I’ve found the weather small talk pivot to be very useful. I bicycle for transportation year-round, and when I comment on the weather, I also relate it to biking, which gives the other person the option to shift to a safe topic in which I’m interested (biking) or simply pick up on the weather thread and go with that. That way, whether the other person is just looking to make small talk or wants a more extensive conversation, I’ve provided a safe, easy option for zir to pursue. While it may be the case for LW that zir illness prevents zir from regularly pursuing similar physical outdoor activities, ze might be able to connect weather to something like reading outdoors (and then to books, if that’s something ze does), or ze might be able to identify some other natural small talk + safe topic connections relevant to zir own life.

      And with people who won’t let things drop, one can always play Questions – https://www.youtube.com/watch?v=swqfFHLck1o

      1. another useful pivot for small talk I use is “what are you passionate about?” shifts the conversation away from jobs, health, and careers.

    3. I teach English as a second language in Canada, and every so often a student will say, “I want to meet more Canadians, but I don’t know what to talk to them about.” I always say, “Hockey. Just learn about hockey and if you have any questions, ask someone wearing a jersey. They’ll be happy to tell you in more detail than you require.”

      1. LOL! Me, too! Or the weather–we Canadians love to complain about the weather!

        1. Canadian here, confirming that I am always 100% down to complain about the weather 😀

          1. That works in the UK as well. There’s nothing we like more then complaining about the weather

  5. After I graduated, I started graduate school and one month in developed mysterious weird problems that eventually lead me to dropping out. I retreated to my apartment for about five years. Eventually I was able to start working again, found my new passion in life, and even got a masters degree. Just to give you the shape of where I’m coming from.

    One of the things I found irritating was when people I saw occasionally would tell me that I look so much better. Well everything is still terrible, so…..the answer I gave in my head was “what am I supposed to look like, blue with purple polka dots?” But there’s nothing to say here, just a polite smile and thanks. Occasionally with some people I would actually say that preemptively, haha aren’t people annoying? And I never had to hear that particular “pleasantry” again.

    “Exploring new directions” was another good answer to what are you doing. Look, you might not be doing what you thought. I took a circuitous route and found something new. “I had to take a new direction in my life so I’m exploring new options + deflect” depending on the social level you have with this person.

    When I was slowly re-entering the world, I volunteered once a week at the museum. It’s across the street from the legislative building, and a bunch of representatives of the bad party came in one day. They were amazingly rude, but gave me a damn good story. One guy asked “Do you work here?” “No, I’m a volunteer.” “What do you do?” “I’m unemployed.” “OH” he said, taking a big step back, like I might be contagious. Come closer, I thought, let’s get you unemployed too.

    Even if what your doing is watching Netflix you can be “taking a survey of modern American streaming platforms”. Maybe you’re self deprecating. “Well being unable to leave the house blows, but I’ve been watching so much Netflix, have you seen Show”

    “When are you going to move out?” “Susan, have you seen the economy? (Laughter)” “I really enjoy living with my mom, she’s so great, we do so much for each other.” (My real answer right now.)

    Preparation can help. Really, I’ve been in your situation! So my nieces third birthday party was happening and I knew my sister in law’s mother was going to ask me lots of questions and give me the sympathy looks and hand squeezes. Ok, what’s she going to ask? How can I respond? Can I get my mom to help me run interference?

    And as for feeling left behind, this is what people told me and I like it. Look, it’s not a race. If it were, what’s the finish line, death? Yikes. People live their lives in so many different ways. It used to be Get Married, Buy A House, Have Kids, Get A Promotion. Ah, fuck that. Pick a part of that, none of it, change the order, go join a feminist art collective in the mountains. It may look like everyone is doing the same thing at the same time, but that’s like, the Facebook impression of life. And if you’re a cynical bastard like me, another friend said “in five years they’ll be getting a divorce, be underwater on their house, and hate their kids.” I know it’s really hard to not compare, but it’s ok to do your own thing, even if it’s not what you would have chosen. You’re here now, so you do you.

    1. Wow. The reply to “I’m a volunteer” should be “That’s great, thanks for volunteering.”

    2. Totally off topic, but I worked (for minimum wage) in a museum for a few years and a well known bad politician (and famously wealthy person) came in one day and tried to stiff me on the admission fee. The admission fee was $2.00

    3. Your line about “giving” the rude person the contagious disease of unemployment killed me! 😂😂😂😂

  6. If you don’t want to be honest in brief with askers I’m a big fan of things being indeterminate in a complex way. Where am I working? “The whole job situation is up in the air. I’m looking forward to catching the new XYZ movie though, have you seen the trailer?” How’s the job hunt? “Frustrating in ways too complicated for me to want to talk about. Have you seen the pictures of Jane’s new baby? That’s super exciting.” Are you going to move soon? “Ugh, that subject takes so much of my time dealing with that I have banned it from my personal time. Did you end up going on that vacation to Bliiptyboop you were talking about?”

    1. I really like:

      “Ugh, that subject takes so much of my time dealing with that I have banned it from my personal time.”

      That satisfies the people who have this need to satisfy themselves that you are Doing Something Valid With Your Time.

      This statement clearly delineates the work you’re doing on Topic as being work. It states that this discussion is Personal Time. And that Topic is separate from Personal Time.

      I like it very much.

  7. Hey LW,
    Totally get where you are with All The Things.
    When people/acquaintances ask me stuff like “So how are you/things going?” I often reply, “Oh, they’re going…”

    I don’t really have anything to add except to express solidarity.

    1. Yeah, that’s one of my go-tos, along with “just taking life one day at a time.” (The latter works particularly well if you follow it up with talk about mindfulness or something else that makes it sound like a personal philosophy and less “because life sucks and I have nothing to humblebrag about, OKAY?!”)

    2. Yeah, I used ‘it’s going’ a lot when people WOULD NOT stop asking about my job hunt. As in, everyone I knew would greet me with “so how’s the job hunt going?” Which made me want to scream. Eventually, with friends, I was just blunt. I told them to stop asking me, because it was stressing me out.

      With new people, the Captain’s advice – brief response and then a question to change the subject – is a great way to handle it. Figure out a stock response, preferably something that doesn’t invite a ton of further questions, like, you’re where you need to be right now or something, or just bypass the question entirely and change the subject to something interesting and immediate: What are my life plans? I don’t know, but have you seen the latest episode of that tv show/read this book/seen the new viral cute animal video? It was great because…

      Also, LW, you do not have to tell anybody about your illness if you don’t want to, or talk to them about it even if they already know. It’s nobody’s business but you and your doctor.

      1. Years ago a friend was in Bulgaria and saw a car with a bumper sticker that said “slow but furious” and it makes me laugh every time I think about it. Every. Damn. Time.

  8. “For the immediate future, I hope to finish [this great book I’m reading]. Have you read anything by [this same author]?”
    “I’m doing a lot online. I don’t know where my day goes after checking [terrific news sources, websites and blogs] and answering email. What about you?”
    “Right now I’m concentrating on the great summer weather. It does a lot to lift my spirits. Do you have any travel plans?”

  9. A lot of my family (and in-laws) refuse to be sidetracked by subject changes and will straight up be like, “No don’t change the subject on me! I want to know when you’re having babies/buying a house/getting a better job.”

    At that point I say, “All good questions! Unfortunately I don’t have good answers!”

    And repeat. Even Bitch-Auntie will throw up her hands, declare me stubborn and walk away eventually.

    1. I want to know when you’re having babies/buying a house/getting a better job.
      “When the Dark Lord commands it, in accordance with the prophecy.”

      1. . Ha! Yes, see, at that point it’s like, you can’t give a serious answer because it’s stopped being a serious conversation; it’s officially ridiculous. Hard to come up with clever retorts in the moment, but whenever you do it’s fun.

        1. I think why I find it such a weird question is that it’s like, have you ever *met* anyone who’s getting married, having a wanted child, or buying a house? They will tell you about it. Sometimes they will tell you more than you ever wanted to know about it. If they haven’t announced that it is happening now, then the answer to “when?” is “I don’t know, and maybe never”. (Of course it’s not really a question; it’s a more-polite way of informing someone that you think they should be doing it. Hence the aggravation.)

          1. That’s what I said to people who kept asking me how my job hunt was going. BELIEVE ME I will tell you when I get a job. I will yell it to the freaking rafters. Just stop PESTERING me about it all the time.

          2. At some point I straight-up told everyone who would ask “so how is the PhD application going?” >> “PhD? What PhD? There is no PhD.” And no amount of questions would change that. The longer version, for a selected few, was that I did not want questions and would volunteer any good news in my own sweet time, and possibly never tell of any bad news, so hey – they still got the info they wanted, but in the meantime I could breathe! WIN – WIN, I tell ya

      2. Saving this for the next family wedding. My religious relatives are sure to love it. Or stop talking.

  10. Thanks for the advice Captain and crew! I probably should have mentioned that I am female because it does add another layer of “your internal clock it ticking”, but I don’t usually pay much attention to gender so I didn’t think to. I have read some things on chronicbabe that have been uplifting and the stories here in the comments also really help. Just this past weekend I was able to buy a sewing machine so I have some new conversation fodder to add into these wonderful scripts. As an inhabitant of a small village I have also been trying to gather myself up enough to talk with the town gossips to try and get the basic information out there. It has worked somewhat because yesterday someone nosy was trying to pry and someone who I barely know glared at him and told him to leave me alone. I have a family gathering coming up so I’m going to do my best to practice these scripts and get comfortable with them. Thanks again!

    1. +1 for Town Gossips! I’ve been reading a ton of Agatha Christie lately and it really does save the day to get one on your side and use them as your news-spreading resource.

        1. I have major chronic illnesses (right now I’m waiting to see if I need brain surgery, yay /s), and I want to stress the Captain’s advice about giving yourself permission to avoid people who harp on this. In fact, I’d recommend setting aside time every day that you can just be alone and decompress, be sad, play a stupid video game, whatever helps you deal with all this right now. One of the hardest things about chronic situations is that it takes a lot of emotional and mental energy just to keep going.

          If you can use the gossip mill in your town, I’d recommend letting people know how draining it is keeping yourself together, especially when every interaction is an inquisition (to you). That you’re going to have to take breaks by yourself just to regain that energy. Send people to the Spoon Theory game https://thespoontheory.tumblr.com/game, I’ve found a lot of people who can’t picture it just from my explanation get a better idea on their own.

          And yeah, it sucks that you have to be an ambassador for chronic illness, but that’s why it’s great that you have a gossip group. You can spend 15 minutes telling them this, and they’ll spread it to the rest of the town.

        2. Having a well-connected gossip on your side who can pre-emptively tell everyone not to bother you about (Subject) is great! Bonus points if you can find someone who is inclined to be very protective, or who thinks of themself as a Helper. Sometimes you can not only avoid problematic interactions with that person (unwanted advice, paternalistic attitude), but also turn their Helping tendencies into something that will genuinely help you. “Hepzibah, you know so many people, and you’re so caring. I wonder if you could help me by letting folks know that it’s really exhausting and unpleasant for me to have to talk to everyone about (Subject). It would really help me.” Gives the Helper an outlet for their desire to help, and (hopefully) gets other people off your back.

          I have been binging on audio versions of Agatha Christie mysteries lately, and I’ve really enjoyed them, except for the occasional dollops of weirdly-placed xenophobia that pop up where you least expect them.

  11. Oof, LW, I remember fearing that question when I was young and trying to figure out what I wanted to do next. The future was this huge, nebulous thing and I couldn’t even start explaining what I wanted or how I thought I was going to get there.

    If it helps you reframe this situation in your mind, I’ve found that when people ask “What are your plans for the future?” what they usually mean is “Is there anything I can do to help you make those plans possible?” In my experience, this is the #1 most frequent prelude question to networking, since it’s giving your acquaintance the information they need to connect you with people in their own network.

    You’re not looking for a job or connections to jobs right now, so the help these people are trying to offer doesn’t apply to you, but hearing this question might be a little less painful for you if you could mentally reframe it as “I want to help you but I don’t want to impose by pushing that help on you without knowing for sure that you want it.”

  12. Another thing you can do is give an outstandishly unbelievable answer, which can be funner and feel less awkward. When I screwed up my wrist and people were always asking me about it I would say “I’m a button man for the Russian mob and last night at the banquet the Chinese ambassador reached for her soup spoon just as Oprah reached for water and as luck would have it…I’ve said too much. Never mind!”
    The story got longer with each telling.

    1. I love this! When I screwed up my knee playing volleyball on the snow (don’t do this by the way if you value your ACL), I told everyone I hurt it cliff-jumping and skiing steep chutes. Yours is better, though–it should be so outlandish that people immediately know you’re teasing!

    2. My go-to for _any injury_ no matter how serious is “oh yeah, I got in a knife fight with a bear! The bear had a knife and just came at me, but I managed to fend it off”. Occasionally, it continues on with some sort of “I fended it off perfectly, but then as I turned to go home I tripped over a tree root and [injury occurred]”.

  13. Hey LW – I don’t have additional advice beyond the Captain’s awesome advice. But I do want to let you know, you’re not alone in feeling that failure to launch shame. I didn’t have chronic pain, but I did have pretty crippling anxiety post- graduation, and I ended up living with my parents until I was 28. So I hope you can find comfort in knowing you’re not the only one out there, no matter what you’re seeing in your friend circle. A lot of post-college folks have to room with the ‘rents for a lot of reasons. You have an excellent reason. You are essentially on hold while you work through this medical thing and seek a diagnosis, and may need to stay in a holding pattern for quite a while post-diagnosis while you find sustainable treatment. And heck! Some people cycle back to the homestead again when situations change even AFTER getting out once (or twice or three times). So please, please, don’t feel bad about it or like you’re the only one. It is 100% understandable and okay to take this time to nest at your parents’ place while you get sorted. Your health is a big deal and important, and you’re doing what you have to to get it taken care of. You’re doing great!

  14. It may help to just give an extremely generic answer, something like “oh I’m just taking it one day/week/month at a time.” Someone who knows your issues and is sympathetic will probably hear the unspoken “and I don’t really want to talk about it” and respect it. Someone who doesn’t know what’s happening will likely realize that they’d have to ask more pointed (and rude) questions to get more info so they’ll probably let it lie. And like CA and others have said, immediate subject changes are super handy.

  15. Along the lines of what CA said, I (fellow debilitating chronic illness sufferer) have had really good success with “That question/problem has been eating most of my life lately, and right now I can’t wait to think about anything else. So, (question about their stuff)?”

    Shuts down that line of discussion and leaves them feeling like there’s something goid and useful they can do to make you happy.

  16. Three cheers for the conversation changing question! It took me a loooong time to realize that if a friend asks how it’s going or what I’ve been up to lately, and I say things have not been so great and leave it at that, it feels like a quiet hint I’d like them to follow up & offer to listen more.

    But if I say things have not been great + end with a subject change, it’s a pretty clear signal that that’s all I want to say on the subject right now. Most people will follow the lead, acknowledge my response briefly & accepting the switch. “I’m sorry to hear that! So yeah I’m still just working at the ol’ airplane welding shop, last week we got a Cessna where the emergency door was being held closed with a piece of coathanger, and…”

  17. LW, fistbump of solidarity. I have an obvious physical disability (as well as depression and anxiety and mysterious fatigue issues) and even so I get flustered by questions about what I’m doing, where I’m working, etc, and I tend to feel ashamed when I admit that eg I’m not working — never mind that no one would hire me anyway!

    Sometimes I find fancy ways of describing leisure activities (babbling on Dreamwidth is “I’m a blogger”, crochet and knitting is “fiber artist”, answering questions on ravelry is “…and part-time volunteer instructor”, etc). Sometimes I just say “I’m watching too much Netflix haha have you seen (show / movie / trailer)”. Sometimes I give obviously made-up answers, like “assemblng a kitty army to take over the world, on a platform of Naps For Everyone”.

    The embarrassment at not being a Real Adult hasn’t ever gone away; I just get better at hiding it.

  18. LW, I’m twice your age, but so relate to feeling like I’m not where I “should” be at this point in my life. Sometimes it’s difficult, but I have to remind myself I am where I am, and I need to be okay with that. It’s hard when you don’t follow the “traditional” script that people expect. Being honest with people about where you are and why, and how you feel about it, is key. I know it’s frustrating and tough, but try to focus on yourself and don’t worry about what other people may think.

    Good luck to you!

  19. As always, the CA has good advice, but here I’d actually like to recommend something additional. Write down an affirmative mantra that you BELIEVE that you can read to yourself after an incident like this occurs.

    Something like:
    “I am dealing with debilitating amounts of chronic pain, for a currently unknown reason, on a daily basis. I am doing the best I can with the energy I have. This is NOT my fault. This is NOT caused by psychological weakness. I REFUSE to be ashamed or beaten by it.”

    Put it in your wallet. Read it back to yourself as needed.

    While I’m not going through your situation, I have been looking for a job since I got my doctorate last year. While the situations aren’t exactly the same, responding to “Sooooo, have you found a job yet?” Is painful for the same reason: the questioner basically forces you to stare directly at the most upsetting part of your life for conversational shits and giggles.
    Having my face shoved in the fact that I have not been able to find a job for a year fills me with shame and anxiety. So after an interaction occurs, even if I deal with it well in the moment, I read my mantra and actively choose to believe it, over my “anxiety-shame-brain” cycle.
    ‘Cuz screw that guy….

  20. I like the scripts and love the idea of a ‘social circuit’. I used to hate small talk until I fixed a small oversharing issue I had and realized that not everyone needs/cares/wants to know everything, and I’m not obligated to care about everyone’s deepest thoughts and/or feelings. It was incredibly freeing in terms of my energy levels.

    Good luck LW – I’m hoping things turn out for you in the way that you want.

  21. Another chronic pain survivor here! (*fistbumps the LW very, very gently*) I spent the first twenty years post-college unemployed or under-employed due to misdiagnosed illness, and even now that it’s been correctly diagnosed and treated, the best I can manage is part-time employment and full-time parenting. From my experience, getting the word out to people that you’re sick will only change the nature of the questions, not reduce the number of them… instead of “What are you planning to do with your life now that you’re out of college?” it will be “How is your health doing, and have you tried This Thing I Read About On The Internet?”

    The good news is that you really can generally dodge all of it… quite openly! Making a face and saying, “I’m afraid that’s so not my favorite topic right now. How about them Subjectchanges?” will often do the trick. The good Captain is absolutely correct about the necessity of the question at the end, but before it, it’s really okay just to say that you’d rather talk about something else. You just then have to have a something-else to pull out of your back pocket and offer them, because they’re probably going to need a minute to regroup from having had their initial topic refused. That doesn’t mean they’ll be upset or anything; just that their heads were going in that direction and it can take a few moments for them to redirect them. So it can really be a good idea to have a topic ready at hand to give them instead, so they don’t have to grope around for one, which gets very Awkward indeed. That’s what the question is for… it’s a way to let them know you still want to talk to them (just not about that!) and to hand them a topic which you’ve pre-vetted as okay.

    Sometimes it can help to make an actual list of safe topics you can bring up any time you need one. You don’t even have to refer to the physical list, but if you think it out and write it down, you’ll remember better when you need to pull one off the list and hand it to somebody you’ve just asked to change the subject.

    Best wishes on both your health and your well-meaning but frustrating neighbors!

  22. Another way to short circuit, “Person Who Hasn’t Seen You In A While: “Hey, good to see you! What’s new? Where are you working these days?” ” is just to say, “Nothing much, what’s up with you?”

    Yes, you’re answering a slightly different question and not answering all the questions they asked, but it’s like answering How are you with Hello– it still fulfills the social formula. It might not work in LA where there’s more probing, but in the Midwest that’ll generally signal that you’ve answered that question about yourself and don’t feel like going into detail.

  23. Oh LW, sending you all of the internet hugs. I’m a decade down the line from where you are now. Chronic pain is still rubbish, but I’ve learnt to manage it better. Constant intrusive questions are still rubbish, but I’ve learnt to manage them better – although I really wish I’d had these scripts and didn’t need to work them out myself over the years. If people knew how boring it was dealing with illness/disability when all people wanted to talk about was my health, I longed for people who could hold proper conversations about books or movies or tv or anything that pain didn’t stop me enjoying or participating in.

    You’ll never stop these questions completely but good luck in reducing them and reducing the impact. Now excuse me, I’m off to read this chronic babe site…

  24. Oh, thank you so much, Captain for the wonderful scripts! Just like you, I am sure that many people radiating upbeat behaviour are secretly anxious, worried or in pain. I have been there, too, and your prediction that the LW might hear new stories and see new sides of people will probably come true.

    Dear LW, I am so sorry you suffer from pain and uncertainty. I have an invisible illness which has also affected my professional life so that I could not fulfill the dreams I had so long harboured. I am still trying to find out what I would like to do – and what people and society think I really can do. I hope you get your diagnosis soon and that it will help at least with the uncertainty.

    I wonder if you would like it here in Scandinavia. People do small talk in here, too – but when someone asks: “How are you?” people in here just might answer honestly and even overshare details of their health or overall life. The pain I have experienced probably is nothing like yours, but I have had my share of hardship and I have also felt so inadequate. I know I am just some Scandinavian stranger in the internet, but I hope it helps even just a little when I say that you are not inadequate – and nor am I. Neither of our lives probably turn out like we imagined or dreamed but I hope they will still be awesome.

    Living from day to day, enduring the uncertainty, not jumping to make decisions is hard as hell. I am doing the exact same thing right now, for reasons different from yours, but the suffering is familiar. When I was in this mental place last time, I pushed the world as far away as I could. This time I tried to do the same but luckily, the my loved ones did not let me do it. It was awkward and terrible but I am happy that I talked to them. I completely understand your feeling of inadequacy, I feel it, too. If you can, do not shut the world out. People are not always that wise when they react to tragic news but once they get used to the new reality they can be really helpful, though they might need some instructions.

    Do you have a team you – your parents, close friends, something like that? Perhaps they could help you with sharing the news of your illness so you do not have to do it yourself all the time? Could they give instructions of how you could be helped to your acquintances? For me that would be information that I am trying to make life tolerable to myself right now and endure it and that I do not want to talk about anything tragic unless I initiate the conversation myself. What would make your life tolerable or even happy right now?

    Best wishes from summery Scandinavia!

  25. Oh my goodness. I could have written this letter. Thank you Captain, as always. I relatively recently got diagnosed with a chronic illness, and as a result dropped down to a super reduced course load at University, and and am not working. As a result, I will graduate rather late compared to other people my ages. It stresses me out when people ask when I will graduate because I’m in my head I’m like “hahaha, hopefully soon if I can keep my pain and fatigue in check enough to do a fuller course load.”
    But in reality I tend to stick with “soon hopefully! I had to take a reduced course load to deal with some health stuff,” and cue the topic change. As the captain said, folks will have different reactions. I got a lot of “It will be fine eventually! You’ll be fine,” when I was experiencing debilitating pain and fatigue. My therapist pointed out that often that had more to do with those people wanting/needing me to be okay. So sometimes I would just throw in an honest, “I’m not okay, but that’s okay.”
    I hope things become clearer and easier soon, LW, Alllllll the Jedi hugs if you want them!!

  26. Hi LW! You sound like you’re doing great and will be just fine, and there’s some awesome advice here already, but here’s my 2c: it may vary greatly on the cultural/social context, but I found that a semi-ironic “ugh, next topic please” / “uhm, next question?” / similar will go a long way. The trick is to give the impression that you are joking-but-not-completely, and then of course you follow up with a question. Usually people get it, though if they keep asking you can always resort to the captain’s scripts. Best of luck!

  27. I too have great luck with honesty and redirection – even “It sucks. Let’s talk about something fun!” followed by a question I think will be interesting to me and the person I am talking with. What’s going on with your kids/pets/garden is a favorite with me. ❤

    1. That works for me as a preemptive action, but there is no reason not to tell the truth if you feel like it. If you feel like AHHICAN’TSTANDTHISCONVERSATION there’s nothing wrong with expressing exactly that. I have to admit when someone who knew what I was going though asked “How are you?” I did occasionally snort and indicate that that was one hell of a silly question, even unto “Horrible, every single day, what else? Boring to talk about”. THEN direct the convo where I wanted it to go.

      1. Yes, absolutely. I did (do) that too, especially with depression, I also mention it matter-of-factly while talking about something else because I want people to catch that it’s not a GREAT TABOO but something very common that I have to deal with regularly, and usually people kind of get it . I also use the true-but-short answer, as in “how are you?” “Awful, and you?” (But this is likelier to be followed by another question, so you should be prepared to give another curt answer – or also just “eh, don’t really want to talk about it. Anyway, … “

      2. Yes, my best friend is very pregnant right now and tired of “how are you feeling?”, so she’s just going with her instinctive reactions and groaning or saying “tired of that question” or similar. It’s fine, from what I’ve observed people generally laugh and realize they’ve asked a common, boring question and everyone moves on.

  28. It can also be nice to have more substantial feelings-conversations with some friends or acquaintances with whom you are close-ish, without going into the details of pain and worry. When I was 36, I went through a divorce and had to move with my kiddo and dog into my parents’ spare room, and start a bunch of parts of my life all over again. It was upheaval and stress in every dimension of my life. When certain friends would ask, “How are things?” I sorta wanted to talk about topics more personal than movies or crafts, but wasn’t up for diving into all the financial, professional, and existential stuff. So I found a few ways of answering that opened the door just far enough to invite closeness withing flinging it all the way open.

    Them: “How are things progressing for you?”

    Me: “You know, I sure didn’t plan to be living with my folks at this point in my life, but it’s been kinda cool to get to know them in this new way, as grownup roommates. We do XYZ now that we never did when I was a kid.”


    “I sure didn’t expect to be back in my childhood bedroom, but I’m enjoying learning my way around the neighborhood as a grownup. You know what I noticed recently that never caught my attention before?”

    Etc. This approach has the added benefit of giving you a chance to put a positive/curious/accepting spin on a tough situation while inviting your friend into a conversation a bit more intimate than small talk (if that’s something YOU want).

  29. I know this is probably my personal issues flaring up, but I would be deeply uncomfortable with most of the script suggestions here. I do not want to give out any personal information, especially health information. If these are people that I can trust with that kind of information, they’d already know, and they’d know not to ask, because I would have told them.
    Simple, vaguely positive answers like “Fine”, “Great”, “Doing well”, followed by “And you?” are usually all you need. People who keep prying get the extra shiny mirrored shell – big smile, “Thanks.” or “That’s nice.” on repeat, followed by silence, walking away, or if I need to deal with them for some reason, talking only about that reason forever, no matter what else they may say.
    The one exception is allergies. “Ugh, allergies!” is a complete response and dismissal in one for anything visible or obvious.

    1. It’s totally fine! You should do whatever works best for you. In my case, it was the opposite – I felt like I was drowning when I said “fine” just to end the conversation. For LW, either of our strategies may apply – or another one, or both, depending on who’s asking and how LW’s feeling at the moment -. Jedi hugs

  30. Hi LW!

    This was me at 25 as well! I landed a full-time job after university that paid enough for me to live independently… and then it massively burned me out and ate my life and soul until I was depressed and actively having suicidal thoughts for the first time in my life. In retrospect I always have had depressive tendencies… but never this bad. One day I realized that an entire month had passed an I had no clear memory of any of it at all. It was just lost to me. I had to cut my losses and move back in with my parents, because the alternatives were just not even remotely safe or sustainable long term.

    And I had so much trouble and shame around it, because it was the same small town I had gone to high school in, and there were still many, many people around who knew me and remembered me from school (including old teachers! oh god the shame) as a high achiever who was Going Places(TM). I felt like the ultimate failure because I had blazed through five years of university, landed a full-time, well-paid job… and yet I still managed to “fail” to be a functioning adult. As proud as I am of my younger sister, the fact that she was successful in ways that I was unable to be didn’t help either. It took me a lot of processing time, a lot of support, a lot of therapy, and a lot of learning to be kind to myself to internalize the idea that it was okay to take everything a day at a time, to focus on managing my illness, and to not have grand future plans.

    You are by NO MEANS the outlier here, LW, and I would put money on you not even being the outlier among people you went to school with. The success stories always get back around to us (literally one of my classmates came out and started dating a fashion designer and moved to NYC and all I could think was what the actual fuck where was my fashion designer and glamorous overseas move when I came out??) but so, so many more of us stumble, and fall, and have to have a soft reset, or a hard reset, and the path through our life is so much less linear than we thought. Something Happens and everything we thought about our life and where it was going and who we were is totally flipped around and it’s terrifying. But that’s okay. Societal pressures have been screwing over our generation so hard, and it feels like all of us are grappling around in the dark trying to reinvent what being a successful adult means. Please, please, the best advice I can give is to focus on nurturing yourself and caring for yourself through this time, one day at a time, and whatever that looks like and means for you is okay. Take the time to work out what YOU want from YOUR life. I know society says “career > marriage > house > children > retire” is the One True Path, but it isn’t. While living with my parents I realized I was actually really, really ambivalent about having a career or buying a house, but I had been pressuring myself to have those as my goals because That Is What You Do.

    Nowadays, when people ask what I want to do in the future, I quote one of my (most beloved most admired) teachers I had in high school and say “I dunno, I try not to plan out my life more than a year in advance. You never know what will come up”. It’s a frivolous, off the cuff answer, and it makes people laugh, while also communicating “I have nothing further to talk about on this topic”. While I was going through my process of recovery I had projects so I had a way to redirect (“I’m not sure, right now I’m working on xyz and really enjoying it!”) but obviously only take on something you are capable of doing and is genuinely helpful to your own life. The point is not to “upskill” for future work. It’s to give you something that gets you through each day, that you enjoy tinkering with, and that can help you step back from the OH GOD WHAT AM I DOING panic on your good days. It helps create little spots of calm and genuine enjoyment during a period that can be otherwise bleak and full of pain.

    Sending you so much luck and love, LW.

    1. hippityhop, I just wanted to thank you for your absolutely fantastic comment and sharing the quote from your teacher with us. I will probably steal this phrase, it is great!

      It is relieving to see that I am not the only one whose life has gone nothing like planned – and also sad that other people have to go through the same doubts and feelings of shame.

      Much love and many warm thoughts!

  31. I’m 24 and graduated university two weeks ago, am currently unemployed and up to my ears in these questions. I am healthy, so mine are a bit easier to dodge, but I really get where you are coming from. My go to answers to SO HOWS IT GOING WITH THE JOB HUNT HOW MANY APPLICATIONS HAVE YOU FILLED THIS WEEK WHERE ARE YOU APPLYING NEXT are always a variation of “Oh you know” or “Yeah been applying, haven’t heard back yet” or “Hard to say” or “The economy…. you know, impossible!”.

    With persistent older relatives I’ve had to be more clear and even obnoxious, “Grandma, I WILL tell you when I get a job, but I can’t tell the bloody future!” or “Nothing has changed since we talked about this last week, so if you haven’t heard of a stellar new job opening, I’d like to talk about anything else.” Most of the time I know they are coming from a good place, but honestly you are allowed to tell people off, if they just can’t drop the subject. These same scripts won’t probably work for the LW because of the pain, but I just wanted to say that if someone JUST. WON’T. DROP. IT. you are allowed to stop being nice.

  32. Feelings of shame are not directly brought up, but severe depression put me in a similar situation for longer and the shame became just monstrous. The book Mindset by Carol Dweck has kinda changed my life; a huge part of that was through helping me see that the situation I was in did not mean that I was a failure and unable to do any better, and that I could learn what I needed to reach my goals. Hopefully you aren’t/will not have to deal with a bunch of shame and beating yourself up about this situation, LW, but I wanted to mention in case the book could help you (or anyone else going through similar), whether now or down the road.

  33. My mentor gave me this wonderful quote when I confided in her that my failure to launch and chronic mental illness was making me self conscious. She works freelance after a mid life crisis and manages her ill health too. She said ‘I’m living the breadth of my life, not just the length of it.’ It’s not attributed to her, she heard it somewhere, but it helps me to adjust my perspective. I haven’t achieved most of the big milestones my peers have. I am broke with no plan, no pension and no security (although I have made unthinkable strides from where I was when I first got diagnosed.) The length of my life scares the crap out of me. But I make a point to live as much as my health allows, indulge all the passions my library card and limited opportunities allow. It’s definitely helpful to give myself permission to live the breadth of my life right now, as it is. When you can’t go forward, make the most of what’s here now.

    Managing chronic illness is a full time job in and of itself. Much of that hard work is invisible and thankless. Your worth is not in being an economic unit of output. There are people out there who know this, who will be glad to meet you and have you in their life.

    I wish you all the future awesomeness.

  34. A couple more scripts that I use for my chronic health issues that have really helped me.
    1) A friend with chronic illness suggested to me to describe my illness in terms of it’s functional limitations rather than any specific medical details. This shuts down the reflexive useless advice giving on how to solve my medical problems (For me it’s always one of three suggestions, all of have been tried and don’t work). Also it cuts down on people extrapolating incorrectly from their non work disabling similar conditions to your work disabling one. I say I have limited endurance rather than saying I have chronic pain. This phrase has the advantage you can just repeat it in a boring way if they push, i.e. “No, I don’t have the endurance for that”
    2) Because being on disability unfortunately has negative connotation is the US, I usually say “I can not work because of my (unnamed) injuries”. For some reason in this format people usually just say sorry to hear that and move on. When I say I am on disability, I get lots of advice on what jobs I people think I could do.

  35. I have a member of my community who lives with chronic pain, and they post about it A lot on social media. This has educated me about respectful ways to talk to them about their life, and reasonable expectations to have for them socially. Posting on social media might not be your style, of course, but if you feel like it might be I think it can go a long way towards reminding people to have respect for those who are just trying to get through the day.

  36. Just sending love the LW’s way; this is tremendously hard and sucks to deal with. Chronic pain can be shockingly lonely, even more so when people are trying to connect with questions that ultimately alienate you. Put your own sanity first where you can, there will be days where you appreciate peoples attempts to connect and days where you want to laugh at how irrelevant their questions are to your actual life, and you’re equally valid on both.

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