#1167: “Tips for staying positive when your body hates you.”

Dear Captain Awkward,

Thanks so much for this blog! I read most of the archives during a recent overnight hospital stay and it really helped keep me entertained. I (she/her pronouns are fine) was a year away from completing my dissertation when my body rebelled. I have two very large liver adenomas, larger than the doctors have seen before. Thankfully my parents live in a city renowned for its hospitals and took me to consults. I had to immediately go on medical leave in September but was hoping to return in the spring. Unfortunately the adenomas are extra stubborn. I’ve had two embolization procedures and I’m in for another two before the surgeon can operate (one of them is in a really risky place and she could hurt me if she tried). With the extra hospital time, she recommended that I extend my leave, so I did.

Everyone congratulated me on how well I’m handling things, but I don’t feel that way. I feel constantly fatigued, I’ve been in a lot of pain, I feel like I’m losing my identity as a scholar and I’ve been living with my parents during the week in case one of these stupid things ruptured. I’ve had to spend a lot of time away from my wife, which has killed both of us. Luckily the surgeon says I should be safe to go home for longer periods now. I’m just wondering how I stay afloat. With a massive surgery looming in May, applying for summer jobs is now unlikely. My father has been helping me financially and I am so grateful. I’m just depressed. I’m done with hospitals, needles and the whole mess. I’m even getting depressed over stupid things like getting denied for a credit card. I feel like I’m a drain on everyone around me and I can’t even contribute academically anymore. I’m writing a 3500 word paper for a big conference in April and even that is a struggle.

My advisor has told me not to worry about the dissertation unless I feel completely up to it, but I would feel better if I could bang out a chapter draft. Therapy would probably help and I was seeing someone before this went down but she wasn’t very effective and then I’ve had to spend so much time in my parents’ city that I haven’t been able to go to appointments anyway. I am also on medication and have been since I was 16. I know that what I need to do is be nice to myself and for the first few months I could do that, but now I’m having trouble. Thanks for everything you do.

Eeyore’s got a bum liver

Hi Eeyore,

What if I told you that you don’t have to feel positive or stay positive or be positive. Stay alive. Positive can wait. It sucks to be in the hospital, keep getting jabbed with needles, be unable to schedule or plan anything in your life, be unable to do work you love, be unable see your wife, be unable to stay on track with finishing your degree. Let’s just sit with how much all that sucks right now, how awful and scary it is, how much this is not what you planned. You had a great life and then your liver decided to make a bunch of bullshit tumors. Who feels positive about that? Not you! Grieve for the plans you made. Give yourself permission to feel your feelings, even if they are crappy. Feeling less than positive and then beating yourself up for not being positive enough helps nobody.

Yes, put some additional support in place. Revisiting therapy sounds like a good idea, maybe you can ask your medical team for recommendations for therapists who work with people around illness and recovery. You might be able to find someone near your parents’ place, or someone who can work with you online or hybrid between online and in-person visits. Need to talk to some peers who know how much everything sucks and who are unlikely to sugar-coat anything for you? Look into support groups (here’s a link for support groups for people with liver diseases in the United States specifically). You might also want to peek at ChronicBabe, a community targeted toward women with chronic illnesses. Here’s a community for and by academics with disabilities and chronic health conditions. Maybe you build a secret/private Facebook group or Slack channel (or other social media platform, up to you!) for yourself and some friends to make it easy to stay in touch when you’re bouncing between home and hospital.

Fight the idea that being sick is something you’re inflicting on others. You say: “I feel like I’m a drain on everyone around me and I can’t even contribute academically anymore.” This ableist framing is hurting you and other people.

Your worth is not based on how much money you earn, it is not based on how much research or scholarship you do. Academia (and other industries) will tell you this is not true, private health care concerns will generate spreadsheets to tell you that this is not true, cruel politicians run on and vote on platforms that argue that this is not true, but they are wrong. You have been fed messages all your life that tell you that you are only worth what you produce and that to allow yourself to need help and to be helped is a weakness. You were told all your life that people who could not work were burdens on “the rest of us,” you were told all your life that optimizing your health was something you owed not only yourself but your workplace and your whole nation, you were told that disability and illness and poverty were the result of poor personal choices that could have been optimized somewhere along the way and if they weren’t, too bad for those people, those people who are now worth less, those who are now making it harder for everyone because they have imperfect, expensive bodies and it’s Just Too Expensive to take care of everybody.

You probably rejected most of these messages as silly and unfair along the way, but it doesn’t mean that they didn’t affect you, that they didn’t crawl inside and wait for you to be sick, and sad, and un-moored from your achievements and no longer earning a steady income, to crawl back out and whisper powerlessness in your ear, to accuse you of being undeserving of care. Tell those messages to fuck off. You, me, all of us need to counter those messages wherever and whenever we find them. It’s expensive to be a human being. We must invest in each other without counting the cost. We must stop acting like it’s possible to un-deserve financial help or medical care when we’re sick, we must build communities and political entities that are not based on rote acceptance of scarcity when it comes to human needs and well-being. Start building that place in yourself.

One step in that direction: Accept the gifts that come your way. Good medical care, financial support from your family, an advisor who wants you to take your time to heal, the ability to take some leave, a supportive wife, interesting studies and projects to go back to. Accept the gifts, you’re not a drain on anybody, you’re not failing at anything, you’re just sick right now, there are people who love you and value you who are rooting for you to get better and who will gladly take up the work of helping you do that if it means they get more “you” in the world, not just You, The Great Scholar, With So Much Potential but the present Januaryish you who is in a shitty mood, feeling pessimistic about credit scores and summer jobs. Let the people in your life give you what they can, stop telling yourself you don’t deserve it. When you can, you will pay it forward. Right now, eat the love sandwich.

Another step: Practice turning “I’m sorry” into “Thank you” as much as you can. “I’m so sorry I’m behind on this conference paper draft” => “Thank you for reading my draft.” “I’m so sorry this is costing you a fortune” => “Thank you for the help.” “I’m so sorry I’m falling behind in my dissertation” => “Thank you for giving me permission to take the time to heal.”

I know I said you don’t have to be productive, and I still think that. You don’t. But if you are like me, that won’t really penetrate all the way, because you like your work and you want to be working on stuff, so let’s make a plan for sustainable engagement with your studies while you’re laid low.

As for the April conference, it’s only January 13. If you need to back out of the conference and the paper, do it. Annual conferences happen every year, this isn’t the only one. If you want to stay involved, I believe in your ability to crank out 3500 words about your topic before April. Your rebellious liver did not destroy your subject matter expertise, and nobody makes it this far in graduate school without having had to crank out a few pages of well-crafted bullshit for a deadline. Plus, lots of academic conference talks, panels, etc. come together pretty last minute. I do not know your field, of course, but please do not think that everyone else at these things is some kind of badass unstoppable work robot. Others are not often going to be able to tell the difference between your half-assed effort and someone’s whole-assed effort.

As for your dissertation? Maybe you don’t write a single page right now. You’re not going to stop being interested in your subject area and collecting knowledge like a magpie, so what if you called this The Year Of Reading Widely instead of The Year I Fell Tragically Behind. Can we find a middle ground between “You’re way too sick to do any work on your dissertation” and “If you stop working on this now maybe you won’t ever be able to again”? I don’t know about you, but I do better the more I convert anxiety into action. A possible process:

Make two lists.


Put some things on the lists.

Evaluate and categorize the things you put on the lists and assign time and focus estimates to them. Group items on the lists according to how interesting you find whatever it is as well as the time/focus investments required to engage. Fun counts on both lists, for example, if you were studying your research topic strictly for pleasure and not as a job or as a method to fashion and insert your particular arguments about it into the Great Discourse, what would you want to read or know about?

When you start feeling anxious about your dissertation and like you’re falling behind, pick one of the dissertation-adjacent readings with a low-focus and low-time commitment and knock it out, 30 minutes here, 1 hour there, one more entry in your bibliography. When you need a break, but still want distraction, grab something from the fun list. You’ll know you’re onto something interesting when you want to engage more. You’ll know you’re feeling better when you dig for longer/more complicated things. You’ll know you need to slow down when nothing on the list seems interesting or possible.

The brain needs breaks, and I really do think that if you can let your interests and your capacity to engage guide you for the next little while while you heal, you will end 2019 with more progress on your dissertation than if you went at it full-force while your health is still so fragile or neglected it entirely and let it grow like a giant guilt-Balrog, flaming at you from the darkness and telling you where you can and can’t go.

If you start using these lists as more reasons to beat yourself up, burn the lists. 

Down the road: When you do get through this crisis and back to your full strength, be an advocate for others. If you teach, be aware of how disability and illness affects your students, be a professor who thinks about accommodations and lets students know you are here to help them do their work and succeed. Push back on the pressure for constant productivity in your grad cohort and your department when you find it, and thank/raise the profile for your advisor for supporting you when you were sick (not everyone’s advisor would do this). I linked this at the top of the post, just want to remind people again that there are a ton of disabled and ill scholars doing amazing and important work inside the academy. You can amplify their work as you move forward in your career and be one of the people who changes things.

Wishing you a speedy resolution and recovery and a return to the things that make you happy very soon.



96 thoughts on “#1167: “Tips for staying positive when your body hates you.”

  1. I love this advice. To jump off replacing “sorry” with “thank you”: when I have been sick for long periods, someone suggested writing thank you cards. Like, could be to the staff or nurses, or it could be thanking my aunt for taking me on a cool vacation six years ago. And, it really helped me feel better! I focused on positive traits in others, remembered happy memories, and, also, I felt like every day I at least made someone else’s day better. Everybody likes compliments.

    Ymmv, of course, and definitely don’t do it if it sounds like work. Personally, I enjoy writing short things anyway, so it might be a quirk specific to me. But, it really did make me feel better, and I heard back from some staff saying things like it “made their day.” Maybe they were just being polite, but maybe it really did make their day? I dunno, just throwing it out there.

    1. Yes. “Being positive” takes effort, and this is a way to expend that effort in a way that makes other people feel good. Much better than trying to force *yourself* to feel good, which is so often counterproductive.

      1. Exactly! And, again, nobody is under any obligation to expend any effort whatsoever. Just, I have felt the internal vibe of, “but I’ve got to do *something*,” so writing the cards helps with that.

    2. I work in healthcare and I can say that I, personally, really appreciate cards/thank yous from patients. I think their gratitude was genuine.

      Some healthcare enterprises have cards you can fill out to thank a staff member (Not just health workers, but maybe the friendly cleaner who took out your trash each morning or whatever). Bonus for the sender: they are free, with free postage! Bonus for the recipient: managers usually hear about it when one of their employees gets a recognition card, so that benefits the recipient as well.

  2. Hi Eeyore. I’ve had a chronic illness for 26 years and I DON’T think this will be your situation, but I’ve recently thought of a framing that might be useful to you despite our situations being different. You said, “I feel like I’m a drain on everyone around me.” I struggled a lot with that too and recently I’ve shifted the framing. Old frame: “As the sick person, I’m burdening everyone who loves and helps me.” New frame: “This illness came to us — to me and my family and friends. I’m the one experiencing it in my body and they’re the ones who experience the situation through the illness being in their loved one’s body.”

    I didn’t choose to be sick, and neither did you. You didn’t bring it to your loved ones. The universe (or whatever) brought it to your circle; you have it in your body, and your loved ones want to help. Because they love you. It often makes loved ones feel better to be able to help.

    Illness sucks. The Captain is right: don’t pressure yourself to be positive. In fact, if you let yourself feel fully as grouchy and angry and sad as you want, that may free up your mind/heart/soul to find little patches of happiness and hope now and then, unforced, either soon or eventually.

    1. This is so beautiful! Thanks so much for this- this framing has helped me process a bit of guilt. It came to us. Thank you!

    2. toot toot toot I’m just sitting here eating my shitty lunch at my shitty work desk and all of a sudden I read the phrase “this illness came to us” and just started crying because it hit me in such a deep place I didn’t even know was there. Thank you.

  3. Nothing to add, just applause.

    Also, as someone wanting to return to study after a break, thank you for the idea of a ‘fun’ reading list and a ‘dissertation’ reading list. I’ll use it to get my head back in the game while I find the right program for me.

    1. The ‘fun’ reading list is a really great suggestion, and I’ll take it one step further: audiobooks. They are the BEST when you’re feeling tired/in pain, because they require nothing of you but to sit/lie there and listen (or, if you’re feeling able, tackle chores like tidying up with someone else’s voice for company). Use the ‘sleep’ function that a lot of the apps have, which will turn off in a set amount of time if you don’t do something to make it continue, so if you fall asleep it won’t continue playing indefinitely.

      Personally I like audiobooks of beloved books I’ve read before so they don’t require 100% of my attention (the Terry Pratchett back catalogue, Harry Potter, etc), but it’s also an easy way to take in some nonfiction or literary fic – whatever works for you.

      Being ill sucks. Being fatigued sucks. Being in pain sucks, and so does feeling that you’re missing out on your life, and having to deal with the sad/angry voices in your head, and being bored – because being ill is boring, too. Everyone here 100% gives you permission to use whatever entertainment you need to to escape all that for a while and spend some time in someone else’s head for a bit.

      If you were taking a break by choice, rather than by necessity, what would you want to do with that time? Of all those things, what are you *capable* of doing right now?

      Do those.

    2. I too think this was excellent advice. To piggyback onto the idea of low pressure reading, both fun and dissertation….I’ve found that during those periods of time when it is impossible to think about my own work, be it processing the reading or coming up with ideas, it can be a productive “break” to learn a new type of software. I know that may sound like a lot to do, but learning how to really use a new software program can be made very low pressure if you use data that isn’t your own. For example, you can learn how to use professional photography and illustration software using photos of your cat that you took on your phone, and then two years down the line, turn out a collection of incredible figures for your dissertation. You can learn statistical software using datasets downloaded from the internet and while you process them, you are only focusing on the learning, not on the bigger interpretation of the data or the implications for your dissertation. Plus, you can learn how to use software while lying in bed or on the couch.

  4. A few years ago I had eye surgery. Because my eye needed to heal and I have a physically intense (sometimes) job I had to take 6 weeks of off work and stay with my parents. While it can’t compare to liver cancer I found that being stuck at my parents home with nothing meaningful to do was depressing. ( Thanks Mom and Dad! Love you! But still!). And lonely.

    Anyway, the book Feeling Good helped me a lot. I don’t remember which parts exactly but there was a part about making a daily schedule that I found really helped my mood. Also, petting animals always helps me. Perhaps one of these ideas could help you?

    Best wishes! You are a human *being* of innate worth not a human *doing.*

  5. Captain–this is all great advice! I will be using a lot of it.

    LW–I’m in grad school hell due to a child’s recently-diagnosed disability, which is certainly not the same as personal illness but has definitely eaten a huge amount of time and changed me from productive person working on a handful of papers and grants to person who cries and apologizes to my advisor a lot. It has not been a fun transition.

    Ultimately, though, I’ve concluded that I’m not behind, exactly. If the idea of a doctorate is that we become independent scholars instead of students, then we get to call the shots on our own work. It’s original, it’s important, and it takes as long as it takes us. Ultimately, your contribution is worth waiting for.

    It may help to write out a new schedule or two for the dissertation, maybe schedules that take two or three years instead of one. Then you’ve got a few alternative paths to success instead of the One True Deadline You Must Meet, which is getting borked and giving you anxiety.

    I hope things start looking up for you!

  6. Much sympathy and understanding. My cancer battle was over 20 years ago and approximately a year after I got the cancer cleared, I had to have a total thyroidectomy. Needless to say I am still battling health concerns that are “fallout” from those two events. (At last count I am currently on 15 perscription not counting the load of MD recommended supplements.). Of course DH and I are one bad cold away from bankruptcy due to my medical bills and my current inability to work. There are weeks when I feel as though all I do is move from clinic appointment to various diagnostic tests. :(. When I have times like that and the brainweasels are in high speed negativity, I find it helpful to remember that I am not being ill “at” people. (Thanks Captain!!!). All that’s happening is I’m physically not at my best and my job is to stop and take care myself while giving my DH and extended friends/family the opportunity to be a support. I also grew up with the message that if I wasn’t working, either at my career or doing something to be ” productive” then I was somehow deficient as a person in the world. It takes awhile to get to the place where it’s possible to simply acknowledge the situation sucks and that’s not changing for at least the immediate future. I wish you strength and peace for the days ahead. You and your family are in my heart.

  7. I feel you so hard, LW. I am about to start my first real academic job, and I am living with a chronic illness which seems to thrive on unpredictability, and for which any attempt at ‘pushing through’ or ‘toughing it out’ or doing basically any of the things that most academics do *all the time* because academia is BROKEN… will mean that I get so sick I have to take many weeks off work. I am constantly having to educate and reframe conversations about the way that I work compared to others. The Cap is right – this is hard and so painful and I am so sorry you are dealing with it.

    Here is what has helped me over the past ten years (I also had to take 3 months leave during my PhD, and do the entire thing part time):
    – reminding myself that every day of work or productivity is a gift that I spent a lot of time thinking I might never have. This helps me when i’m feeling like i’m letting people down or not doing enough.
    – getting counselling. I really encourage you to do this if you can. The university might be able to help, or your surgeon might have suggestions of therapists or psychologists with specific expertise in what you need right now.
    – let the people who love you help you. They really do love you for *who* you are, not how much you achieve (*regardless* of how much that is part of your own identity). And we all love to be able to help people we love when they need us.
    – remember that you like studying and reading and writing and learning. If you can’t (or feel like you just don’t want to right now), this is *not* a fundamental shift in your character, or you being ‘lazy’. It is because you are doing it so tough right now that there is not a lot left for other things. The Cap is totally right – when you can work, you will, and until then, just give yourself permission to survive.
    – there are an almost infinite variety of ways to do a thesis and be a success. It feels like we only want the shiny, fast, prolific, high achievers. But what *matters* is saying something novel and interesting. You’ll be able to do that if you just take the time you need.

    It’s hard and I’m so sorry this is happening to you. But you are not alone, in your life or in dealing with this experience when you are desperately trying to be your most brilliant profound self. Stay alive, and everything else will be ok, even if it doesn’t look like what you imagined it would.

    1. “…there are an almost infinite variety of ways to do a thesis and be a success.”

      To piggy back (sort of) on this, what I found (find) helpful is to process stuff verbally. Kind of like a stream of consciousness. Most family and friends no matter how much they love me aren’t going to want to be my audience.

      Fortunately for them I tend to do it in the middle of the night…and record it. I can then take my thoughts/ideas/etc. and research further, reword them, write them down. I find this infinitely easier than sitting down to write “from scratch” because even with an outline, notes, sources at my finger tips, etc., etc., etc., I do not enjoy the process of writing.

      Honestly I am shocked some days that I managed to finish grad school because I just hate the process of forced/required writing so hard. Being able to use my thoughts almost like a transcription (if you kind of squint sideways anyway) was massively helpful with actually finishing my dissertation.

  8. I’ve been reading for years and this is the first letter that really hit me with a story I feel like I’ve lived. Captain, this is good advice, and thank you for calling out the way ableism is affecting this person’s struggle. LW, as an academic you might actually enjoy reading some disability theory or narratives. There is so much great stuff out there.

    When I was getting IV treatments twice a week in a cancer clinic in undergrad, I made a friend who showed me I didn’t need to be positive. It’s ok to be angry and sad and furious and despairing. Some things just suck, and it can be incredibly freeing to stop looking for a silver lining and just acknowledge that.

  9. Illness in general is no fun to work with when you have Things To Do, and I just wanted to say that I’m proud of you and I believe in you and your ability to take care of yourself and make the choices you need to, and I’m sure your wife and your parents and your advisers feel similarly. If I had to give you advice, it’d be to just deal with your health and let everything else follow when it can. I’ll be thinking of you and wishing you and your family well. Take care.

  10. As someone trying to do a thesis through a fatigue condition: you are already making amazing progress! A 3500 word paper is a massive undertaking in its own right (not nearly as deceptively simple as it sounds) and even if you were in perfect health a chapter on top of that would be a huge ask of someone. In a really nice way, I think you are putting far too much pressure on yourself with what you are trying to achieve right now. It can be the most frustrating thing to want to get to X and to feel it getting ever further away because your health/circumstances don’t allow you to do the work you feel you SHOULD, but that isn’t what’s happening. If you have one idea in a day, read a single page of a book, even just think of the things you still need to read – that is progress towards X. Find a book online that looks good for your chapter draft and buy it? Progress. Jot down the name of an author you want to explore more? Progress. If you can reframe to give yourself permission to do even the smallest of things, if that is all you can cope with that day, and know you’ve progressed that day, then you are always moving towards your goal. (One of my supervisors once confided in me that she’d managed to get enough time off work to read two journal articles in a day, and it was the most progress she’d made in months, and that really helped me re-evaluate how much work I felt like I “had” to do for it to “count”. She’s massively successful and well known and an expert, and even she makes progress one article at a time most of the time)

    I also find this really good thinking for when I’m feeling like a burden. If, on your worst days, you manage to smile at someone who loves you when they bring you tea or something equally “small” – you have done something amazing for them. How many people have you had in life who you wish you could see smile one last time? The people you are feeling like a burden to are helping you because they want to because they love you. Just having you in their lives means they are not being burdened at all – in fact, they have the wonderful gift of you. Incidentally, one thing I have identified is that a lot of my thinking around me being a burden actually comes from a lack of independence. I want to be able to do things for myself, I resent that I need someone to do it for me, and then I feel guilty at resenting help which I am fortunate enough to receive and that turns into a spiral of feeling like a burden. Having as much help as you need is (genuinely) wonderful and definitely to be appreciated, but it’s also ok to want to do things without help sometimes. If you feel up to a walk in the park on your own/making your own meal one night/doing a food shop for foods you like/anything you enjoy doing (again, however small) it’s ok to say you want to do that alone, and knowing you still have that independence might help you to feel better about accepting help?

    I hope you start to feel better soon.

  11. I had lung cancer and the most painful lung removal surgery, snapped all the tendons in my left ankle, was in an air cast for a year, then injured my right knee. I call those 3 years the black hole. I went nowhere. I did nothing. There were periods were the pain was so great that I couldnt even follow the plot of the stupidest TV shows (think fuller house, the insipid spin off of full house). I couldn’t meditate (which I HIGHLY recommend for you) because they all started with “focus on your breathing” and with lung cancer, breathing was the painful thing I was trying to get my mind off of.

    My therapist said that I was feeling demoralized. That summed it up perfectly.

    The thing to keep in mind is that this is a temporary situation. You’ll have your surgery, you’ll get whatever rehab you need. Sounds like you have good insurance, and a good support system. I started a gratitude journal to focus on all the things that I was lucky to have. Yes, your life sucks right now, but you have good doctors. You have a place to live and aren’t going to be evicted. You have a loving partner, who you will get to spend the rest of your life with. You have a job you can return to when you are well enough…you don’t seem in danger of losing your livelihood. You have understanding colleagues. There are a lot of positives in your life, even though they seem clouded over by the more pressingly insistent negatives. That said…it’s okay to let yourself feel totally bummed out too. It totally sucks to be sick. But…this is temporary.

    I wish you a quick recovery. This will be in the past at some point, and you will be able to live a long long time on your terms.

  12. LW, you sound an awful lot like me circa 2014. I got cancer, had to take a year off from my PhD, and everything went to hell. The Captain’s advice is perfect, but here are some other things that helped me get my mental health, and eventually my career, back on track. As always, ymmv, and also you sound North American, and I’m based in Europe, so some of the things I say may not apply to you.

    * Does your university have some sort of group for disabled (and/or chronically ill) grad students? What about for disabled staff members? (Even if you don’t qualify as staff, these groups tend to be really happy to help out grad students.) These groups can be a little hard to find, but it’s worth asking around — for example, it turned out my PhD uni’s LGBTQ group had a ‘disabled queer postgrads’ secret Facebook group, who were awesome at moral support and helping navigate bureaucracy.

    * It sounds like you’re living in another city at the moment — does your current city have any universities? Might they have groups of disabled academics that you could connect with even though you’re not based at that university?

    * Does your university have any student support services that you might be eligible for, such as counselling, disability services support, etc? Sometimes these folks are awesome, sometimes these folks are terrible, but you never know unless you ask?

    * It sounds like your advisor is supportive, but can you identify other mentors in your department/field who might be able to help you out? (If your field is on Twitter, disabled academic Twitter can be amazing for both solidarity and practical advice.) During my PhD, I ran into a weird bureaucratic snag, and the senior academic who ended up bailing me out was someone whose son had a similar disease to mine.

    * You have cancer. You’re playing a different game than most of your cohort, one in which pain is omnipresent and mere survival is really damn hard. I know it’s really tempting to compare yourself to others, but they’re playing Mario Kart while you’re playing Pac Man. Comparisons don’t make sense anymore. (Fun fact: comparisons never actually make sense. Everyone’s different. Everyone’s successes are different, everyone’s failures are different.) You may not know the rules for Pac Man, but the people playing Mario Kart sure as heck don’t know those rules, so if you need to take a little extra time or decide not to go to the conference or you don’t make any progress for several months because your liver hates you? That’s okay!

  13. Much sympathy to what you’re going through and may you soon be healthy again. I’m posting what I learned from a different perspective altogether. I was a stay-at-home Mom during the time when working women sneered at us. I had dreams but couldn’t fulfill them at that time. Partly I dealt with it using humor, which may not apply to you. But at parties when I got the usual question from someone with an attitude, I’d answer “And what do YOU do?” with “About what, dear?” But the main thing I came to understand is that life is long and there will be time for everything. I had to learn, not so much patience, as accepting that there are life cycles. So I enjoyed my children and worked toward my dream of being a writer when I could. I read books on writing and actually profited from the delay in that I wrote all the awful stuff that beginning writers always write without feeling depressed that I wasn’t Hemingway or O’Henry. I had time to write poorly without pressure. The idea of a support group is great and do seek out one. I had a group of other stay-at-home mothers through church and volunteer work and neighbors, several groups in fact. None of them were writers, but you don’t need people in the same exact situation. You just need people who like you and sometimes having people with diverse challenges is just what helps you. I also had time to wander out into the world through different kinds of volunteer work and myriad jobs at church. This helped me as a writer because I had more experience to draw on. As the Captain said, you can use this experience in later life to understand more about other people’s situations. When the children got older, I did become a writer. You will achieve your dreams. Life just doesn’t let us set a fixed schedule. And your experience may change your dreams somewhat or lead you in a slightly different direction. I was a drama major, something I was unable to pursue because of children and also our geographical location. But my dream changed and that training helped me become a writer because I was used to becoming other people and getting inside their heads. So pursue your dreams and be open to new places your dreams lead you. May all your medical procedures be successful!

  14. This is GREAT advice! I wish I had had this years ago, when illness interrupted my graduate studies.

  15. Letter Writer! Oh my goodness! The DRAIN!

    I read this blog in my RSS and had to jump up to my computer to write a comment. I’m going to share this post widely, too.

    I was in law school when I had a stroke. For the first 22 years of my life, I had no idea that there was a 14mm hole in my heart, allowing blood to bypass my lungs completely whenever I did stressful things like run or care a lot about academic efforts. It completely derailed my life– my family came to my apartment and packed my stuff in whatever boxes or bags they could find and moved it to my grandma’s basement. I lived with my parents for a few years, through rehab and getting back on my feet.

    I’m legally disabled now, living an entirely different life than I would have planned. My life is wonderful for a lot of reasons, but I had to *grieve for my planned life the way a person grieves an actual death.*

    Livers heal a lot more easily than brains, so your outlook is probably better than mine. Regardless, be very careful of that “if only” thinking. You need to grieve! Instead of being mean to yourself about being upset that the Etch-a-Sketch that is your envisioned life has been shaken, take a moment to really be bummed out that everything you had put together got messed up.

    Your question was how to stay positive and I’m telling you to be sad and angry. Seems weird, right? Grieving opens space for gratitude. Gratitude heals.

    The Captain has it completely right about saying thank you instead of apologizing. I can see people’s expressions change in a much different way when I say, “Thank you for your patience,” instead of, “Sorry for being late!” Honor yourself and your efforts. You know how hard you are working, so don’t discredit that in some kind of shared fantasy that if we hate ourselves enough all of our shortcomings will be forgiven.

    Okay– being the drain:
    You are currently utilizing a lot of resources, and you’re doing that because you need them. You are taking time, space, money, medicine, accessible parking spaces– whatever it is– because that’s what is required to keep you healthy, functional, and safe. You are being all kinds of inconvenient, and people will happily go out of their way to make sure your needs are met because they value you. Humans have an innate need to help, so trust the sincerity of those who offer.

    Politics right now are hell for people who aren’t industrious and impenetrable machines. All of the rhetoric about the people who are being drains on the system, which has always been toxic, will feel hurtful in ways you hadn’t considered before. I feel especially strongly about immigration discussions that center around what value a person brings to the country. The talk is that we don’t want people who will use health and human services because we see the people in our country who currently use those services as undeserving of a good life. They are lazy or stupid or whatever. Cap’ addressed this, but it’s SO IMPORTANT to understand.

    We, as a society, decided that people shouldn’t starve, be homeless, or suffer and die from preventable and treatable diseases. Period. At some point in our country, enough people believed that there is a basic dignity in being human that even the most vulnerable deserve a good life to make legislation and develop programs to protect those of us who would otherwise be unable to care for ourselves. It is a statement of humanity.

    You are enough right this moment to be deserving of everything good you are being given.

    Major Jedi hugs to you if you would like them.

    Trigger warning: Depression and suicidal thoughts

    I have come very close to, um, plugging my drain over concerns about how much time, energy, and money those around me have to dedicate to me. I have to actively remind myself of how willing I would be to pay or take time off work or listen to beeping sounds instead of losing someone I love. If your wife were the one in your place, at what point in *your* treatment would she be so inconvenient that you would want to divorce her? That you would prefer that she die? I”m guessing that you would prefer a few nights on a hospital room floor to being a widow. How about your parents? Whenever you start to feel despondent, remember that you are loved as much as you love. It’s not enough to treat the trauma, but it could get you through some really dark times.

    1. Yes, yes, yes. About the stuff about the LW’s wife in the last paragraph: yes.

      Over the past year I injured the tendons controlling my hands through (irony!) overuse. I was forced to rest them totally, for months. I *could not use my hands.* (Especially not on the computer, which had caused the injury. I’m an author, so my work was out.) Fully able-bodied, no hands, is a very strange state of uselessness. My husband did everything. Dishes, cooking, everything, I could barely even play with our kid, especially when I was trying not to cry, which was often. I talked to him about how useless I felt to my family. He explained that it didn’t matter what I could or couldn’t do, that I didn’t understand just how much I brought to our family just by being there and being me. He didn’t say being there & having a positive attitude. Just being me. It was a sort of simple & profound statement about how much being means. Even if in a given day I didn’t add anything tangible to their lives, they didn’t care. They wanted me there.

      I’m kind of getting teary remembering it.

  16. Wow, I really needed to read this right now. I could have written this letter (though I’ve been out for nearly three years at this point), and recently I’ve been having an extended anxiety attack about whether I’ll even have an academic career to go back to when I’m better. Thanks, LW and CA! So much!

  17. Great answer. I’m 37 and have Intestinal Failure, Short Bowel Syndrome and (reason for all of the above) severe Crohn’s disease. It hit me hard in my teens, such that I got academically derailed completely (not that I think this will happen with you; just setting the scene) and wound up doing freelance journalism for a few years, which I had to figure out on my own due to not having come at it via the usual academic or professional channels.

    For various reasons, I got used to struggling with a lot, and it’s only really in the past year (which has been OTT even by my standards: three operations, two of them big, in nine months, plus I got trained up to feed myself intravenously at home) that I’ve fully grasped that YES, my friends have my back and it’s totally okay to ask for and get help. People want to help. I think that if all of this was happening to a friend of yours, LW, and you were the healthy person looking on, you’d be scrambling to do whatever you could for your friend, and you’d want them to feel like they could accept that help without being diminished by it in the slightest. You are still you, even though you may not always feel like you right now.

    Also, when you’re in good enough shape to have visitors, make sure you tell people you actively want them. Sometimes people can stay away because they feel they’re intruding, and it’s easy to misinterpret that as them not caring. More often, it’s just that they haven’t been through anything like your experience perfectly, so they may not be great judges of how much you want people around. This is also more broadly applicable – the more health shit I go through, physically and mentally, the more obvious it has got to just say how I’m feeling, including when that’s uncertain, or disappointed, or ambivalent.

    And I’d reiterate the usefulness of support groups – Facebook has its problems, but it is generally very good on medical support groups, and you’ll find practical living tips from other people going through the same thing that often nurses and doctors won’t know or would never think to tell you.

    Good luck. ❤

  18. This, this, this, this and this. Captain and readers have ways of wording things that help me–and others I’m sure–understand or “get” what we couldn’t quite before, however smart we supposedly are. I feel like this is the Internet’s true purpose [well, this and xkcd.] [And YouTube.]
    Those of us who aren’t real people-oriented, and have a dodgy family and/or few real friends, sometimes feel like there aren’t many who give a rip about us, and feel even more guilt when we can’t manage “industrious and impenetrable”–especially after years of having done so well enough to keep afloat. But hey, it wasn’t our fault, and we do manage to contribute to the cosmos simply by brightening [or having brightened] even *one* person’s life.
    Thanks to all who have helped me understand this.

  19. I broke my foot last month, and am currently in a walking cast. It just so happens that a lot of other shit is going down in my life (including my cat developing health problems) and to the people around me, and some are in far worse situations (i.e., my friend with a spinal fracture who just had to have emergency surgery, and is facing a lifelong uphill battle to recovery). So it’s been a month, and I’m trying to have a positive, “it-could-be-so-much-worse” perspective. At the same time, I give myself permission for a half hour every day to hate this walking cast with the fury of a thousand suns. I sit in a room by myself and let myself be angry and frustrated and DONE. Sometimes I write down the angry, depressed things. Sometimes I just fume and wallow. It helps. And your situation is so much more difficult than mine, I can’t imagine how you COULD “stay positive”. Do what the Captain suggests, and give yourself permission to feel your feelings.

  20. In the last year of my dissertation, I also had (much more minor) health issues come up. I didn’t have to take time off entirely, but for a few months I did spend more of each day in the bathroom than I’d wish, with what turned out to be ulcerative colitis once I got it diagnosed. One thing that really helped me was the day I realized that I had to separate out feeling upset that I was sick from the guilt about not working. I’d found myself literally feeling guilty about going to the bathroom when I needed to, because I was supposed to be working. Which was patently ridiculous, once I thought about it–it’s not like I had any control over it or anything. So I decided that I could be annoyed about the situation, but not guilty. And I realized that I’d bee using the “I should be getting more work done!” guilt to mask the “I’m sick and I don’t know what it is and I feel crappy and it sucks” feelings, because by that point in my dissertation it was easier and more familiar to feel ashamed of not working enough than deal with my feelings about probably having a chronic illness. But, in the slightly longer term, it was better for me to work on dropping the guilt. Anyway, I just offer it as one way I thought about reframing things.

    1. “I’d found myself literally feeling guilty about going to the bathroom when I needed to, because I was supposed to be working.”

      We are so good at the shame game!

  21. I feel you on the need to be productive, Eeyore, and I can imagine that this situation is incredibly frustrating. This may not be helpful at all, but I also believe in your ability to crank out 3500 words before April. They can probably be finished really close to the deadline, too; most academics I know submit an abstract for conferences and journals and things long before writing the actual paper, and then have maximum time to actually do the writing. I think most boards are pretty lenient about things changing between abstract submission and paper submission. But obviously you do not need to do the thing to be worthy as a human being! Hope things work out for you xx

  22. I really like the captain’s suggestions! I had a similar situation when I broke my hip just over 5 years ago and I too at times felt like a huge burden on everyone, but eventually I came to terms with this was something that happened to me and I would do what I could to keep my identity (this is hugely important to me and I think most people) while ALSO making sure I have my body every chance to heal. Part of it was viewing taking care of my body as a much bigger job than normal, I have had issues in the past with viewing taking care of my body as important, so that helped me put that in perspective. Laying down to rest a few times a day was just as important to healing as doing my PT exercises and I was able to reframe it that way for myself. It helped me reframe my typical body care for myself now that I am healed so I am much better about taking naps, getting regular exercise, not skipping meals, etc.

    With regards to keeping my identity, I was able to work from home in a limited capacity, so I did that. I wasn’t 100%, but my boss was happy to get my 50-75% self than nothing. That is why I really love the captain’s suggestions to make a list of things you can do – reading, etc. and then keep doing those things regularly – every day, every week, whatever makes sense. That will help you so much with keeping your identity, but also allow you to heal and rest which is something you MUST do! Maybe start claiming the identity of someone who listens to and takes care of their body. In my case, I carried that identity with me after recovering and it was a great addition!

    1. Thanks so much! Resting has been very important to me. It is helpful to remember that my whole body can be affected. That is a great aspect of identity to add because I wasn’t terribly good at it before!

  23. This is wonderful advice! LW, I remember how much my identity was bound up in my self-conception as a Scholar and specifically as a Productive and Hard Working Scholar. I graduated a few years ago and I’m still working through my baggage about this, to be honest. I hope it’s something your therapist and Team You can talk to you about.

    I recently chatted with a master’s graduate who is research-assisting as she prepares to apply to doctoral programs. She said she has been amazed in her current role that research takes so much time. In a master’s, everything is fast: you have a short period of coursework and a short period of time to conduct a very short experiment or explore a very small idea. It doesn’t feel small because it’s your whole world at the time, but knowledge doesn’t develop on an academic calendar.

    As a PhD grad myself, I think her perspective makes sense for doctoral programs too. You’re doing your work over a longer period of time, you’ve built up speed and you’re heading toward the finish line, and it feels like stepping into a pothole is going to send you careening off course. But you’re actually barrelling toward a made-up goal on a completely arbitrary schedule. If you take another year or multiple years to get there, or if you spend a sort of fallow period reading and thinking without worrying about word count, you’re not doing it wrong. You’re just doing it. You can’t possibly lose it because it’s yours.

    Source: I took six years to complete my dissertation, which I don’t recommend exactly, but I have to say that I was much smarter and experienced and knowledgeable at the end than when I began writing, and it was a much better work of scholarship than if I had finished it under duress on my original arbitrary timeline. I am not less of an intellectual for taking time off to care for my well-being as I did the work.

    1. Thank you for your kind words! I have been amazed at how different the doctoral program feels than my masters did.

  24. Hello!

    I’m the letter writer. First off, thank you to the Captain for the wonderful and sensitive advice. It was just what I needed. I got to go home for the weekend so I’m snuggling with my wife and reading the answer and the sweet comments. Thanks to all! Will definitely look into support groups. I’m feeling much more positive about my ability to get my paper done. I will share that my field is English literature with a specialization in Renaissance drama. I’m so overwhelmed with the kindness right now and I’m so glad I decided to write in.

    1. Best of luck to you, Eeyore! I figure I’ll leave the advice/commiseration to people who have more relevant things to say, but as a fellow PhD student and also fellow human, I am rooting for you!

  25. What helped me to not feel like a burden when I was sick and living with my parents was to focus on the contributions I was making to my family. Sometimes that meant surviving the day was my contribution. It was also be things like petting the dog/providing a warm lap for the cats, giving excellent TV recommendations because I had basically watched all the TV ever made, keeping my mom company while she made dinner, or telling a funny story. It made me feel good to focus on the things that I could do and to focus on things that weren’t about me or my body.

  26. I don’t have a ton to add other than a big hug and a reminder that even being able to articulate this and ask for help here is a big deal and you should commend yourself for that, you’re doing a lot more thinking and processing than you might think you are.

    But I wanted to add an extra “yes, this” to this part:
    “Give yourself permission to feel your feelings, even if they are crappy. Feeling less than positive and then beating yourself up for not being positive enough helps nobody.”

    One of the most important things that I’ve gotten out of therapy in the last year was when I was telling my therapist about how there’s this particular couple weeks in spring that hold the anniversaries of now three deaths of close friends/family members. I was telling her this because she asked how I was and I said I just wasn’t sure what to do to make it feel better during those weeks, they were just so hard, etc.

    And she replied “maybe this time of year is just always going to be crappy.”

    That was like a weight lifted off of me. It was okay to not be like “okay, I’ve got to figure out how to move on and heal” but “okay, this sucks. That’s just what it is.”

    She went on to talk about how I can use that knowledge to look ahead each year and figure out what I need to do to compensate for the crappiness, like scheduling time off at work, asking for help, or whatever I thought might help to just ease the other burdens in my life so that I could just not feel like I have to chuck off the grief in order to deal with everything else.

    It’s really huge to give yourself permission for things to suck. To acknowledge that the situation does indeed suck. It’s not that you’re having trouble dealing, it’s not that you can’t manage, it’s that it’s a crappy place to be and it’s a crappy way to feel and that’s just the way it is.

    Good luck. All of Captain’s advice is great, I hope you’re able to follow as much of it as you can.

  27. My wife has cancer. She is nearly 2 years into her battle and has been in remission for over a year now. Unfortunately, her cancer still requires maintenance chemo and frequent hospital and doctor appointments. This also all started about 6 months after we made the decision that she could quit the full time job that was slowly killing her soul and go into business for herself. We are fortunate to have friends and family in the area who are able and willing to help us financially and practically (meals, transportation, etc.). Accepting these gifts is hard, but I know I’d do the same if tables were turned. And, I’d rather be suffering than see my friends suffer so 🤷‍♀️ All of this has been said by other commenters, of course.
    One thing that I haven’t seen mentioned is to take advantage of your medical TEAM. It sounds like you are in close contact with your doctors and that they are affiliated with a hospital. Make sure your doctors know how you are feeling, physically and emotionally. Perhaps they can tweak you medication regimen so a med that make you tired is taken at night instead of the morning? Maybe this is a symptom of your illness that they never mentioned, in which case it’s not you being “lazy (or whatever else you brain has labeled it)” it’s your disease rearing it’s ugly head. Another important, but overlooked, member of your treatment team is a social worker. All hospitals have them. Ask to speak to that person. They may or may not be able to offer talk therapy but their entire job is to help you access the services you need. They can also help you find and apply for financial grants and SSDI.

  28. Could I say something about the genre of books about the importance of staying positive and the inspirational stories about people who got treatment for horrible diseases and used the time off from work to write an award winning novel, go to medical school, train for a marathon, win a gold medal in the Olympics, and learn to play the violin? Blow raspberries at those books when you pass them on the library shelf. Maybe you will come away from this experience transformed and with a new appreciation for every day as a gift. Maybe there is some wisdom to be had or some weird good to come out of it. Or maybe, maybe, you’ll find out what everyone suspects: This whole thing sucks. You’re exhausted and in pain. I’d like to see a few inspirational books with that message.

    Remember comfort in/dump out? ( http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407 )
    You are in the center ring. You’re allowed to “kvetch and complain and whine and moan and curse the heavens and say, “Life is unfair” and Why Me?”

    1. Clarry , there’s a book written by a theology professor from Duke Divinity School – “Everything Happens for a Reason: And Other Lies I’ve Loved”: by Kate Bowler. She’s a young mom with bowel cancer that will probably kill her one day in the near future. The book does have a religious theme but it’s basically “This sucks and I have no idea what’s going on spiritually about it, please don’t tell me God is doing this for my benefit”

      It’s a short read, but your comment reminded me of it.

  29. First, Jedi hugs from a person with a chronic illness. I have found it genuinely useful, on rare occasions, to stand and scream “DIABETES CAN EAT A DICK!!” as loud as I can, because I’m allowed to get mad at my stupid fucking useless waste of space pancreas.

    More importantly, a point to consider: you feel ashamed for using available resources. The thing is, those resources exist for a reason: so you can use them. Cruel politicians and judgy assholes exist; but so do a lot of people who understand that human beings need help sometimes, and they really want to provide that help. Maybe think about it as serving them? Your doctors have never seen such adenomas before, but now they have, and what they learn may help someone else someday. On reflection, that’s quite the Pollyanna stretch, but if it works……..

    1. Hi there! I was diagnosed with diabetes and fatty liver (which my autocorrect just tried to turn into farty liver) this year as well. Thanks for the perspective on how doctors can be served by learning more about these particular adenomas. I will say that I am so grateful to be seen at a massive hospital where up to 30 do tors at a time can discuss my case. It means that everyone can offer something different and the next time someone presents with similar symptoms they can be ready.

  30. The trick that really helped me finish mt dissertation when difficult things were going on in my life was to break down the tasks by how difficult they were and figure out baby steps for the hard ones. Like when I was not feeling well enough to summarize other papers that I need to include. I would just type long quotes from the paper into my draft and add the citation. Later when I felt better I would go back and explain the material and delete the quote. Much easier since all the info gathering was there. So overall I had a very large task list broken down by difficulty and just plugged in to the part of the task list that matched my function that day.

  31. I think for those of us who are driven and don’t feel valuable unless we’re contributing, being made to sit still and do nothing is torture. We feel like we have to constantly earn our keep in the world even to our own detriments. Recently, my husband and I were on a do-nothing resort vacation and even there, with nary a worry, I still found ways to plan our day even when I did’t have to and most decisions required a sentence, at the most. It’s so hard to turn off.

    The advice here is solid. Sit with it. Learn from it. It’s ok to be still, even bored, and be taken care of. Let our loved ones shine and rain love down upon us.

  32. Reframing can work wonders. Partner and I have switched from “So sorry I’m (running late/rambling/forgot X/feeling glum/etc.)” to “Thank you for your patience” with genuine inflection. I’ve applied it to work too and find that using a grateful tone often leads to more positive responses from others as well. It’s a redirect from inconveniencing others to casting them as “the good guy” for a moment.

  33. Sending Jedi hugs if wanted. And just offering a possible tool: escapism. Escapist entertainment isn’t a weakness, it can be a damn good coping mechanism.

    I know you are dealing with a lot of frustration, serious and scary stuff.

    Allowing myself some big, cheap, brainless belly laughs has gotten me through some long, nasty, sad, painful crap. Sometimes there is nothing you can do to make the bad times be over faster, and it helps to just step out for a little while.

    Reading or watching things that make you laugh or feel good, is a cheap and accessible way to temporarily get some endorphins and lower your blood pressure and stress hormones. Don’t skip it or feel bad about using it. It’s for a good purpose, and it works.

    Best wishes.

  34. I’m currently undergoing my own medical emergency and have a surgery scheduled for Wednesday. I’m a pretty independent person and tend towards not asking for help and doing things on my own. While I am dealing with this illness one thing I am trying to do is resist the urge to do it by myself. It’s been little things, like saying yes to co-workers who offer to bring dinner after my surgery or asking my mom and sister to come over and watch GBBO with me when I am essentially immobile over the weekend. I think people who care about you do want to help. They are worried and concerned too, so giving them little things they can do will not only cheer you up, I think it can strengthen the bonds you have with others. It will make everyone feel less isolated and scared. So yeah, try not to feel guilty, eat the sandwich–but don’t be afraid to ask someone to bring you a sandwich, too. Learning to lean on the kindness of others is hard but rewarding.

    I hope everything goes well for you!

    1. My parents and I watch bake off every night when I’m home! Best wishes for your surgery. My procedure is scheduled for Wednesday as well.

  35. Thank you, Captain Awkward. I’m starting chemo in a week for breast cancer. Thank you.

    OP, hang in there. I’m with you, sister.

  36. Oh since we’re posting chronic illness and disability resources, I keep a blog that’s full of ’em at spoonieliving.com.

    LW, try the Ableism and Coping tags… you should find some great stuff. And I keep support groups and similar under the Community tag. Oh, and got plenty of depression resources under the Depression tag too.

    Best wishes ❤️ You’ll survive, and do so with way better empath

    1. Lol spaced out partway through, sorry.

      …way better empathy and grace than you had before. Being sick is An Experience and it sucks ass, but it will teach you lots. You don’t have to look forward to all this “learning” in any positive way, but hopefully that framework will help ya cope through the worst of it.

  37. First time commenter, but I’m a loyal CA fan. I have personal experience here! I got duodenal cancer in the middle of my dissertation research. I was really sick for about 6 months (with the all to common problem of getting blown off by doctors for a looooong time), then got my diagnosis, had surgery, then 6 months of chemo. I basically stopped doing everything on my research for about a year. It was hard enough to hold down my day job, which I needed for the paycheck and insurance. I told my advisor what was happening along the way. It was easier to pay the few hundred bucks for my 800 class than to do the medical withdrawal process from my program because I had NO SPOONS, but a supportive dad who helped me with a bit of money for school. Once I was done with chemo, I met with my advisor on the phone, and got back to work. I graduated a year and a half later. My dissertation has a short comment about the year gap in my data collection, but that’s it. I survived. For what it’s worth, letter writer, my advice is to rally your team, communicate with your colleagues, and trudge on as best you can. I know it’s hard and scary. I see you, I was you. I got through it, and you can too! *jedi hugs* I would be happy to commiserate further if you need it! :

    1. Thank you so much, and I’m so happy that you were able to finish. Best wishes for your future good health!

      1. Note, finishing or not finishing your dissertation isn’t the most important thing. Life has thrown me so many curveballs that made things so different from what I thought or expected when I started grad school in 2003. I work hard not to feel disappointed, but rather revel in the condors and happiness in my life. Hang in there and be kind to yourself! ❤️

  38. LW, you are so full of ambition. That’s good! You have so much stuff to do in front of you, all of which you could achieve, if it weren’t for that damned body and pain!

    CA is right. Take that ambition and parce it into getting your body healed and what mental work you’re capable of. Your goals will be smaller/shorter than goals of a few years ago. That’s ok. You’re spending a lot of energy in healing and physical maintenance, which is considerable.

    I just had surgery and will be bedridden for 2 months. I had no idea how much time my body needs for healing. I’m napping a couple times a day. My focus is shot (and I’m a scientist) which drives me nuts. I can only read light stuff. I listen to a lot of music and podcasts.

    But I keep my goal ahead of me. I will be back to work, reading journal articles and developing projects. Someday ahead of now. I’ve accepted that for the next 2 months my physical body takes preference over my brain. I must cater to my physical needs to get better.

    While I’ve acquiesced to this, it doesn’t mean I’m not furious and annoyed as hell. I want to do my work. I don’t like being dependent on others to help me get to the bathroom!

    I guess, LW, look at this as a trial and tribulation to get through. CA and others have great advice on how to keep your brain and emotions focused. All I can add is that you consider this medical experience as something that will give you a particular empathy to help your friends, family or coworkers with in the future if they have a medical issue.

    This is the time for small goals. This is the time to heal and allow others to help you. Perhaps you and your wife can come up with a few personal goals for the two of you. Maybe a date night, where she can get takeout and the two of you eat alone behind a closed door, watch a movie and have small intimacies- like a good hand or head massage.

    Best of luck. I hope your surgery is sooner rather than later and you are on the road to healing.

  39. Thank you for this response. I have been disabled with depression for a year and a half and after some improvement I’ve hit a down patch and I so needed to hear that all of us are allowed this time, and there is not a laziness gene that keeps the sick, sick by their own fault. And for the LW, remember that illness and rest and recovery are hard work, and you can respect that work just as you do your other kinds of work, even if it doesn’t feel productive.

  40. HI LW,

    I had a bought with a serious semi-chronic illness when I was about your age. It sucks, and is scary, and it’s especially hard to manage when you’re also trying to finish your education/start your career/become a functioning adult. I definitely found therapy INCREDIBLY helpful- but it was also a big time commitment. I didn’t start therapy until I had my health semi-under control, because I didn’t have the time or energy. So don’t beat yourself up if you can’t figure out everything at once!

    Another thing I noticed was that I received a LOT of outside pressure to “be more positive”. There was this idea that I had to fake it and act positive, because the only way to be a good sick person was if I could smile and pretend everything was fine. Somehow, our society has come to this idea that every person who has a serious illness needs to be the sort of person who can say that their illness was really a “blessing in disguise.” This is BS. Therapy helped me stop catestrophezing (sorry, no idea how to spell that), it taught me how to live in the moment and not ruin good times with worries about the future…at least some of the time, and it also just gave me practical advice on how to manage days-to-days with life, bills and relationships when you’re dealing with something huge and overwhelming. Therapy also gave me a place where I could vent my frustrations and fears that wasn’t my friends and family – which made things easier on them.

    CA advice about self care is also so important. From your letter, I feel like you are the type of person who might feel like you have to take every free moment, or day when you are feeling good to work on school on try to “catch up”. But taking time for yourself is also important! And no- it isn’t lazy! Taking care of yourself now is what will help you be able to resume school when your health gets better.

    One final thing – I came out of my illness with PTSD that went untreated for years, because I was sure what happened to me wasn’t bad enough to qualify. PTSD after illness is actually not uncommon. I’d feel something (tired, pain etc.) that reminded me of a symptom of my illness and have terrible emotional flashbacks. If you find yourself ‘overreacting’ to things, or struggling not to panic about getting ill again in the future, I’d seek out a therapist with experience with PTSD and get assessed.

    Best of luck and many hugs.

  41. This is timely for me, too. I’m a cancer survivor (18 months post-surgery) and also have something wrong with my right eye, and over Christmas/New Year I had bronchitis and a blocked sinus which haven’t left me yet. I’ve piled on a lot of weight, which has made me unhappy as I love to do long-distance walks and at the moment I can barely walk ten minutes without getting breathless. I went to my dance class today, for the first time this year, and found I was unable to do many of the exercises *and* felt so weak and dizzy on the way home that I called in at a friend’s house and asked to sit down. I want to be well, or at least not so ill as I am now, and my treacherous brain just keeps telling me I’m not trying hard enough. As I also get SAD, I’m hoping another few weeks might make the difference, and I do expect to start feeling better … but every stray germ that passes my way knocks me back again, and it’s getting harder and harder to climb out every time. Reminding myself that it isn’t my fault certainly helps, and so does remembering that other people are doing battle with the same thing, or worse, and they somehow manage to keep putting one foot in front of the other. So best wishes, LW, from someone who may have a little insight into what you’re feeling.

  42. Sending you much love OP please conquer your liver tumours and head voices you’ve got this ♥️❤️

  43. A few things:

    A few years ago, I had a student who needed to withdraw from my class in college because of side-effects from a life-saving brain surgery. I swear, she was apologizing for dropping out of my class when she was the person who had had a major, scary medical issue that required freaking brain surgery! I told her that she had nothing to apologize for, that I was so glad she was alive that having her leave my class was a non-issue, and that she had no reason to feel bad about having disrupted academic progress – because 5-year plans are seriously overrated.

    Two weeks later, I was in a rear-end collision that caused post-concussion syndrome severe enough that I had to drop out of my Master’s program temporarily. I get back on track 9 months later….and have a life-threatening pregnancy complication that keeps me hospitalized for a week, my son hospitalized for 4 months, and the two of us on medically complicated baby house-arrest for the next 18 months or so which has now turned into a billion medical and therapy appointments for him.

    Whenever I was feeling down – which happened sporadically during those three years or so – I reminded myself that everything I said to my former student was true about me as well. I had nothing to apologize for – I was the victim of a distracted driver and a pregnancy complication that no one understands. The fact that my son and I are both alive is miraculous and worth celebrating even if we never do anything worthwhile again. And seriously, 5 year-plans are a joke. Maybe I’ll get my Master’s by 40 – but the headlines will be better if I get it at age 90.

    One thing that made me feel a bit better is I started crocheting hats for a local homeless shelter. It was something I could do while stuck in bed, or caring for an infant, or waiting at a doctor’s appointment, and I liked being able to give back to other people who were in a hard place.

  44. LW, something that has helped me cope with my chronic condition is letting myself have a time to feel sad. Usually I allot about 2 hours once a month where I will wallow or sob or yell or whatever else my brain needs, watch specific sad movies/TV shows, and let myself feel the disappointment I have in my own body betraying me. After the 2 hours, I then begin the process of watching lighter things or create my to do lists. Usually I choose a small action to do to feel accomplished like taking a shower. Something small to a healthy person but large when you have a chronic condition.

    This is totally based on how I am feeling in a specific month. Most months I am able to carry on just fine. Some months I take my 2 hours one day and then need an hour the next and a half hour the day after. Trying to carry on like the trooper everyone called me was too much. It is also perfectly okay to say to your support system, “Thank you for caring but I am feeling upset right now, can I vent to you for a bit?” I was shocked at the amount of people who told me afterwards how happy they were to hear me vent. They felt honored that I trusted them so much.

    This may not work for you, but I wanted to throw it out there because no one in any pain management clinic, hospital, or support group ever mentioned to me about taking time to just feel what I needed to feel.

    1. Yes, this! I’ve benefited enormously from just giving myself the time and space to feel my own sadness, but also putting a time limit on how long I allow myself to sit in the sadness and explore those feelings. In the months after my father died, I went into my worst depressive episode in years, and one of my coping methods early on was to set aside specific times to sit with my feelings of grief and sadness and just let myself be sad–I would literally look at my planner and go, “OK, there’s nothing I absolutely have to do on Wednesday night this week, so I should have time then to sit down and feel the sadness that has been building up, plus enough time to recover.” Putting a time limit on how long I was going to explore those feelings and give myself over to them was crucial because I have a bad tendency to wallow, and having a plan to ease out of my sadness party and into other things was really helpful. I found it helpful to follow up these sessions with activities that didn’t require emotional engagement on my part–I spent a lot of time listening to fact-based podcasts because they were distracting, but didn’t leave me feeling emotionally drained.

      Not everyone finds crying cathartic, but I have sometimes found it so. My particular mental…quirks…have resulted in very-hard-to-bypass programming that makes it really, really hard for me to cry organically about anything going on in my own life. However, for some reason, I have the lowest possible threshold when it comes to crying at movies, and for that reason, I’ve been known to use movies to trigger that physical response so that I can get the release of a good cry. As long as there’s no one to see me doing it, I will bawl through pretty much anything that is even slightly moving to me. I’ve been known to set aside time to watch a movie that I absolutely know is going to set off that reaction. Being able to get it out is helpful, and when my chronic conditions are making me feel alienated from other people, it’s weirdly comforting to me to have this strong reaction to a creative work. I think the logic is something like “The people who made this hoped that it would make their audience members feel something, so by having this strong emotional response, I am connected to the people who made it and to all the people who had a similar reaction.” YMMV, of course. And remember–there is no shame in weeping openly for pretty much the entire last hour of Return of the King.

  45. This advice is awesome, and I wish I had gotten it when I was dealing with cancer in my last year of uni.

    Instead, I am still dealing with occasional fallout from Handling Other People’s Feelings About My Illness, 20+ years later.

    LW, staying alive is your full-time job right now, and IT IS OKAY to be sad and angry and frustrated and all the “negative” feelings, and it is also 100% okay to celebrate seemingly tiny victories like reading a whole page of a magazine in one sitting or managing to wash your hair or eating something and not throwing it up.

  46. Dear Exceptional Eyore,

    I have been through the situation you described, almost to the letter.

    You are good enough. You are doing enough. You are dead right that academia is hard and punishing and fucking brilliant.

    I suffered and it passed. It eventually passed, really. And then I felt guilty and wanted to catch up. Ugh. Once all the brownish-beige emotional brain fog subsided enough to see my hand in front of my face, I realized that I was STILL exceptional in my field and that the others were cooking on the same gas as I was. The others were great, too. Instead of publishing before them and getting the kudos, I read their work and learned from their scholarship. Then I published something else.

    We stand on the shoulders of giants, no?

    No. We stand on the shoulders of normal human beings, like you and me.

    Be well. Be good to yourself and yours. Be yourself. This thing will end.


  47. “…you were told that disability and illness and poverty were the result of poor personal choices…”

    So much this! Especially in the US where we still have this “Puritan work ethic” and “pull yourself up by your own bootstraps” mentality. We have been taught that any weakness, any not doing it all, all the time, being poor, being ill, whatever…is a moral failing. It’s not.

    Go on, try to pull yourself up by your own bootstraps. I mean literally try…I’ll wait.

    Can’t be done right? It sounds like a pretty cool metaphor, but when you break it down, literally, the only thing that happens from trying to do that is falling over because you need at least one other person to help. Because no one is an island, we all need other people for those times, and they will happen no matter how hard we try to make them not happen, when we simply can’t be at 100 percent.

    OP do your best to take CA’s advice. Let yourself heal, let others help you, let your dissertation (I know, I know…) wait a while. Six months or even one more year shouldn’t make a huge difference. Caveat: I don’t actually know this to be true…just basing on my own writing my dissertation experiences that occasionally/often devolved into the laundry needing to be folded right this minute … and other such things that distracted me. Or…start on that chapter. Make a (really) rough draft when you have time/energy to sit and write. Remember that you can edit later. You do not have to make it perfect as you are writing it. <—Still trying to teach this to myself.

    Full disclosure, this is something I struggle with myself. I had some pretty serious dental surgery this past week I spent the day of feeling guilty about not doing stuff. Why?! Because we’ve been taught to always be contributing lest we be lazy and slothful wastes of space…that’s why. And, it’s wrong.

    1. The thing that really kills it is that the bootstraps metaphor appears to have originated as shorthand for **an absurdly impossible task**……. and yet somehow it’s devolved into “wow you did the impossible!” and then “we EXPECT you to do the impossible, because it’s actually possible” #noitsnot You’re right to criticise it, Kaos. People who use it with all seriousness are generally putting their full ass on display.

  48. LW, I share your feeling of needing to be productive/achieve things. And yeah it’s bullshit because we don’t have to be productivity machines to be valuable, but also a sense of achievement can be fulfilling, especially if you’re feeling a bit powerless in the face of illness. Something that I find helpful is…recreational achievement, I guess I would call it, like doing a reading/movie challenge or finishing a video game or even watching an entire Netflix series start to finish. It’s still just spending your time doing something fun, and it’s not about, like, turning relaxation and pleasure into goal-oriented activities with criteria for success, but it helps my brain recognise that this stuff actually is a valuable use of my time and something I’m choosing to do. I especially liked the Pop Sugar reading challenge (it’s a list of prompts, not titles, so you still choose what you want to read, but it led to me reading so many interesting things that I wouldn’t normally have picked up). Colouring would work too, if you’re into that.

  49. LW, I feel you on this so much. 3 years ago, I was in the first year of my Master’s degree and I found out I had skin cancer. I had a part-time job in my field and I waited until summer break to have it removed since I didn’t want to mess up my class schedule or take a week off from classes so I could go to appointments and heal. I barely told anyone except for the month I had bandages on my face since I often got told I was too young to have skin cancer. I was still so wrapped up in the idea that academics come first that I put off necessary medical treatment in order to not mess up my academic career.

    Two years ago, my mental health started declining because I was undiagnosed bipolar and the stress of school and a dysfunctional romantic relationship were getting to me. This finally culminated in me having a psychotic break last June that very nearly ended in me getting put in a psych ward. I was just gearing up to go job hunting and put my shiny new degree into use but that derailed my life and I’m just now getting back on my feet. The meds I was put on made me exhausted all the time and I really only had enough energy to go to work and then I’d come home and crash and watch TV since I didn’t have been the spoons to do anything else. This time around I was very open about what was going on and pretty much everyone in my life, besides my mom, was very understanding and supportive of what I was going through. My new boyfriend of two months, who was a good friend for a year before that, moved in with me last October to take care of me, cook, and clean since I just wasn’t capable of doing it myself anymore. I was so depressed and angry for a while because I’d feel like I failed and that all of the plans for my life I’d envisioned had gone out the window and I wasn’t sure what my life would look like now. The most valuable lesson I learned was to take it slow and to focus on your health and that while you might be moving at a much slower pace than your peers in your field, you’re surviving by any means necessary and that’s all that matters. Also, while your life may end up looking drastically different from the lives of people in your program, it’s still worthwhile and valid and don’t let the culture of academia convince you otherwise.

  50. Im so sorry your going through this LW. I had to drop out during my first quarter of undergrad because of a mystery illness that kept putting me in the hospital. None of the tests were giving me a diagnosis and I could barely stay awake long enough to get through class. So I went back home (2000 miles away!) where the doctors were much better. Dropping out was one of the hardest decisions I ever had to make – I felt like a failure.

    Once we got the diagnosis and began medication, I was able to go back, but it was a hard four years. I was managing my chronic condition, but just barely. Every time I had to ask for an extension, or miss a class, or see another doctor that dismissed my symptoms, or had to back out of plans with friends, I felt like I was letting everyone down. I felt broken. I felt like my body betrayed me and I was less than I was before. I eventually got an additional diagnosis that made my life so much easier, but I was already pretty deep in my depression. The only reason I made it that long was because I had relatives with chronic illness that could really understand and empathize with what I was going through. After a particularly bad interaction with a doctor I just stopped taking my medication (a bad move, but fortunately finishing college meant I had a better diet and a less intense schedule so the backlash wasn’t too bad). I ended up going to my primary care doctor for help who connected me with the most compassionate team of mental health experts.

    Later, I was on the other side, with a sick loved one. My heart was breaking for them. I never felt like they were a burden and I would have done anything I could to take away their pain. I saw my experience in them and I knew how scared, and frustrated, and hurt they were. Captain is totally right that one of the best things you can do, for you and your support system, is to change your sorrys to thank yous. There’s nothing to apologize for. They want to help. They don’t want you to have to carry this burden alone. Just like you would want any of them struggling alone if the situation was reversed.

  51. Thank you so much for this post Captain, and to LW for sharing. As someone trying to be in academia with chronic health problems that have been flaring up lately (thanks holidays for #family) it was a huge gift today.

  52. Hey Eeyore–Apologies if you already know this or if it was already mentioned (I’m at work and so can’t read all the comments), but I work in an academic library. One of the things our Interlibrary Loan department does is that we can check out books to distance learners (like people who are working on their dissertation, or fixing their ill liver, in the next state over) and we send them to them through the mail. We will also scan chapters and download PDFs and email them to students. If you are wanting to at least keep up with research or reading materials, contact your university’s library and see if there’s anything they can do.

  53. Thanks to LW and everyone who shared their stories here, and many thanks to the Captain for the advice.

    My situation is a hell of a lot less severe than the LW’s since it won’t kill me, but I’ve been dealing with severe, sometimes excruciating, genital pain for the past 2 months. Adding together pain, shame about having health problems with that area of my body, dysphoria with having to acknowledge that area of my body at all (I’m trans and have not had lower surgery yet), feeling guilty that being trans and being on hormones is basically the cause of my problems and therefore it’s “all my fault” has already been bad enough, but I’m also still working a full-time job *and* trying to move to a new city. And I just started on a new team at work and I feel like I’m constantly letting them down by having to take so much time off to curl up in a ball and feel miserable.

    1. I wish you rest, pain relief and the knowledge that your efforts to address the dysphoria and hormonal stuff are smart and brave, not a flaw to be blamed. You deserve to be at ease in a body that isn’t in pain and feels right. I’m rooting for you, you are not alone.

  54. I facilitate groups for wellness recovery action planning, where a group of people with chronic illness support each other in creating their own unique plans to stay well and manage crises. I have my own disability which has involved grieving the life I thought I’d have. Every group member I meet has their own struggle and my guiding principle is that you are the expert on what you need. There is no correct, ultra fast template for getting better asap without relying on others, I wish there was. We all find a way that works in our circumstances because our bodies and brains are different. What gets me through hopeless days is knowing that we share a common experience of coming to terms with disability/ ill health. Every morning, thousands, millions of your peers wake up and find that reason to go forth and be awesome. You are not alone.

    One of the first things in the plan is inviting each person to make a list of what they are like when they are feeling well (on having a good spoons day); personality traits, habits, who they are. Usually, the group is like ‘huh? I am here because I am sick, how does this help me?’ Our health system (and ableist society at large) tends to spend a lot of time focusing on how disabled people can’t do X and aren’t Y. Being in treatment can involve a 24/7 focus on being a patient and thus what is wrong with you. It’s so easy for that guilt to morph into illness and disability being a person’s identity. As hard it is to make that list, I’ve seen people dig deep and find hope. Others took the list to their loved ones and got that reality check of how much they are valued (you tell silly jokes, you are kind, you make art, you give the best hugs, you sing in the shower, you always have a pen etc etc.)

    Making that list reminded me of the qualities I still have, the skills I still have, the many people who love me. It also helped me see that my body might never function how I want, but my humour and my love for my dog will break through anyway. I’m not defined by what is wrong with me. I’m a scribbling, bellydancing, forgetful, generous geek who happens to have a wonky brain.

    The mantra I cling is to from Shelley Lewis ‘My recovery must come first so that everything I love in life doesn’t have to come last.’ I try to remind myself that every boring, dependent, embarrassing, tedious bit of recovery work is an investment in my life and the people I love. Choosing to care for your body is work, that is your job and it is an active commitment to your future. You are working really hard.

    I can accept that while I hate being disabled, I can use my wellness recovery action plan to give a structure to my daily struggle. I can rest knowing that in crises, my doctors and family have my wishes laid out. I can identify the first flickers of my mood dropping and I have an simple plan for what I can do to pull it around when I start to crash. When I am well enough to take on more independence, I know how I will sustain that (and how my family and friends are a part of supporting me in that.) It takes a lot of the worry and 3 am panic out of life.

    I am still me. I still make a difference in the world and the world needs folks like us. LW, your worth is not in what you do but who you are.

  55. The biggest thing I had to get over as I began to accept my body’s rebellion was the idea of emotion being completely unprofessional. On top of being sick, I would put so much energy into hiding my sickness and suppressing every emotion related to my sickness that even a short chat with a professor or a colleague became exhausting. I cry very easily, and I’m so used to it that I can have an entire calm conversation will someone while my eyes do their best impression of a Gyarados, but for a while I was so caught up in the terror of a professor seeing me cry and telling everyone I was *that* person who cried in their office that I avoided asking for help at all. It seems like you’ve got a wonderful advisor who’s willing to support you, so my advice for you is to check in with yourself and if you realize you’re holding yourself back in anyway from accepting her help for fear of being seen as weak, stop that now.

    (I’m in that weird chronic illness state where none of my problems seem that big on their own so I’m ashamed of asking to be accommodated but put together the problems add up to a wonky mess of a fleshprison that needs help sometimes. Currently working on re-framing “fleshprison” as “fleshhome”!)

  56. One thing that’s helped me a lot with illness has been doing creative things. I adore handcrafts, and creating stuff – tangible, attractive, useful things – has helped me feel like I actually exist and actually matter in a way that no amount of intellectual work has. If you’re artsy or creative in any way – or have daydreams about learning – it can be really good for the soul.

    Of course, if the idea of one more useful, healthy thing (that coincidentally also takes time and energy and space and resources) makes you want to scream, naps are also good for the soul. You don’t need to be 100% a good patient all day every day. Because being a “good patient” is exhausting too. Reality is more like doing all the critical stuff to avoid death, and some of the helpful-but-not-critical stuff too.

    Good luck to you.

  57. Hi, LW. First off: the situation you’re in sucks. I’m sorry to hear it and this internet rando is thinking of you, FWIW.

    I’ve been through something a bit similar: my father died suddenly about a month before I was due to submit, and I wound up spending three months or so at home to help my mother out. As it turned out, I submitted a term late. The silver lining to that is that I had a extra term to polish and proofread it, which made it stronger. The Year of Reading Widely may do the same for yours!

    The other thing that I hope helps with reframing is a silly sappy thing my husband and I have: we say that we’re on Team Us. And Team Us members are still in the team when they’re on the injured list! Your teammates are helping because they’re on Team You, and they want you off the injured list ASAP.

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