update: I slept through an entire day of work

Remember the letter-writer who slept through an entire day of work? She updated a few months later to say she’d sought medical help about her fatigue. Here’s the latest update.

I’ve been at my new job a year now, and 9 months since sleeping through a full day of work. That exhaustion episode turned into months of doctor’s appointments and eventual diagnoses for: Crohn’s disease, Hashimoto’s thyroiditis, fibromyalgia, anemia, and multiple vitamin deficiencies. One of the medications for one of those caused another unrelated major organ to begin malfunctioning, and also brings with it an increased risk of certain cancers that require regular screenings. I go to multiple doctors, labs, and hospitals on average 2-3 times/month, and it has certainly made work life, and life in general, pretty challenging. At times I wondered if I’d have to simply say “nope” to my ideal career as a mover and shaker, as well as other future life aspirations.

All that said, somehow I finagled a raise in July (what?!) and get the not-so-sneaky-feeling that my boss is grooming me for a leadership position. It’s been a wild rollercoaster ride of a year, to say the least. I wanted to share my “lessons learned” with you and the readers (whom I affectionately refer to in my head as “The Peanut Gallery”).

1. Alison & reader consensus/advice – I credit you all with removing the stigma of shame from my initial exhaustion episode, and spurring me to seek real medical attention. In particular, commenter Wendy Darling made a note about how US culture makes us sometimes feel that poor health is our fault, like a moral failing. I realized this was spot-on for me, and putting it into words went a long way towards mediating the effects. Other commenters really hammered home the importance of self-care and avoiding repeat events, which I’ve made strides towards (but continue to work at… I’ve learned that “aspirational” and “ambitious” aren’t always compliments!).

2. None of this would be possible without my excellent manager and colleagues. I mean, really. I feel forever indebted to the folks at work for their compassion, understanding, and flexibility. I don’t know how anybody with chronic illness can function in a hostile or unaccommodating work environment, truthfully. It’s only because of my workplace accommodations that I’m still able to do my best work despite constantly (literally constantly) being sick, and I’m so grateful to feel that I’m still valued. Plus, being able to work makes me feel like a contributing member of society and gives me respite from the other yuckiness.

3. Chronic illness is a lot of things, but “chronic” is right there in the name. For a while, my coworkers would ask if I was feeling better (daily), until I got around to explaining, one-by-one, that I might never actually feel better and that I needed to just take some time to find my new normal (but thank you for your concern!). In our line of work “finding the new normal” is a familiar concept (albeit in a different context), so thankfully I think we’re all on the same page.

4. I worked a modified work schedule for about 3-4 months. Due to the nature of my illnesses, I have good days and bad days but almost nothing about it is predictable. My doctors and I thought maybe a day-in/day-out alternating schedule would help, so that on good days I could still be productive remotely and on bad days when I had to be in the office I only had to make it through that one day before knowing there would be a recovery day following. It also allowed me to schedule health-related appointments when I was already remote, which cut back on disruptiveness. We went this path instead of invoking modified disability or part-time work.

5. I preemptively decided to come back to the office full-time before the official start date because I was finding that the back and forth was disrupting my workflow, and being in the office full-time felt more manageable once I got 2 of my worst symptoms under control. Plus, to be fully honest, if my boss thinks I could potentially be a leader here, then I’m still going to be hellbent on climbing upwards.

6. I’ve had to cut back on travel but keep in close contact with my boss about what seems manageable. My boss continues to be phenomenal about reallocating work – the team in general is willing to play to each other’s strengths, even if it means shuffling job responsibilities and roles on an ad hoc basis. For projects where I cut back on travel, I do more of what I like to think of as “ground support” (managing relationships, putting my writing/editing skills to good use, strategic oversight, etc.). Our work by nature is chaotic, so this is probably less wonky in our industry than it might be in others.

7. Ultimately, I decided (stubbornly, as some commenters noted), “Hey, this chronically ill thing is not for me.” I’m not delusional – it can’t be cured and the best I can hope for is remission. It requires a truly stupid amount of managing in both lifestyle/diet choices and organization (and money! Holy moly, the healthcare costs even with insurance). But I am an ambitious/stubborn person and I can’t imagine a life where I’m limited because of my autoimmune illnesses. I gots things to do, places to be! Actually, it’s a little funny because it seems that both my autoimmune system and I are overachievers in this situation.

Mostly in my ups and downs I learned that “ill” doesn’t mean incompetent. You still have valuable qualities to lend to your workplace, although balancing work, life, and wellness will be at times unfairly challenging. I briefly considered contracting either a concierge medical service or a personal patient advocate, because at times the volume of appointments, follow-ups, and bills was overwhelming. Ultimately I chose not to, but I’m grateful to know that services are available to help manage the “full-time patient lifestyle” in the event that you’re both a “full-time patient” and also happen to be a “full-time” something else, and actually want to accomplish other things!

In 2019 I hope to see clinical signs pointing towards remission, and I’ve set my sights on finishing my doctoral degree that was rudely interrupted by health issues. Hopefully after that, more time for enjoyable life experiences and maybe, just maybe, a promotion.

{ 114 comments… read them below }

  1. OlympiasEpiriot*

    What a great update. Thank you for writing in! As someone who has a relatively mild chronic condition myself, I send my very best wishes for the balancing act.

    1. OP*

      To you and everybody else saying such kind things (I can’t reply to everybody) – thank you, truly, for the kind words and encouragement. This community has been integral to helping me get on the right track. Wishing you all the best!

  2. Myrin*

    Oh wow, OP, you have an absolutely admirable attitude. I’m so sorry you’re dealing with so much (and all at once, too!) but at the same time I’m sensing an energy and positivity in this letter that is truly remarkable. I’m wishing you all the best!

  3. Prof Ma'am*

    Thank you for this update. My husband has a chronic condition that we’ve been trying to figure out treatment for over the last 2 years. I think the comment about having supportive manager/colleagues is just hugely reassuring that those with chronic illness can contribute to the workforce even if at face value they look like they have limited abilities. Wishing you all the best!

    1. Amelia Pond*

      I’m sorry, that’s so tough to deal with. Make sure you’re taking good care of yourself, too. It goes without saying, those of us who are sick have it bad, but the people who love us also very much hurt too. So, so many people who are caretakers (which you may or may not be) end up being burned out, especially if they don’t have a good support system. It’s kind of like the airplane instructions that say to secure your own air mask before helping other.

    1. NW Mossy*

      I see it too – this update is shot through with the kind of agile thinking balanced with compassion and realism that is so valuable in leaders.

      I’ll also say this: I’ve learned a lot from my experiences of managing people through serious/chronic illness and personal crisis, but the most important lesson is that supporting and caring for employees through these challenges isn’t just good humanity, but it’s good business sense too. Not only does the employee feel like this is an employer that’s earned a right to their best effort, but everyone around the situation sees that they too are in an environment that will help them continue to do well even when life circumstances conspire against them. That’s pretty potent stuff.

      1. Minocho*

        I agree with this absolutely. My current employer treats people with respect has good policies in place, and helped many employees that struggled after Hurricane Harvey hit last year. I was one of the evacuees, and they gave me no trouble about my spotty ability to work remotely, and a charity they sponsor to help employees recover from disasters helped me personally as well.

        I now donate to that charity, and I am happy to go the extra mile for a good employer. I share what I love about working here with friends, family, and new employees freely, because it’s heartfelt. I think the payoff for being a good employer is hard to measure with metrics, but definitely a tangible thing.

  4. Cabbage for a Head*

    Great update! I also have a disability that affects my work and recently had 2 weeks of severely reduced productivity after a flare up. It’s awesome to have supportive leaders and coworkers during those times to buoy you when you are having a bad day.

    I worked for a while in a less-forgiving shop where my bad days were less tolerated. There was definitely an air of disability = defective and it was difficult to balance my self-care needs with work needs.

    1. AnnaBananna*

      This is one of the reasons I’m wary of looking elsewhere. My leadership has been so great about my fibro (schedule adjustments galore, altering workload to fit my new schedule, the space to use sick time when I just cannot make it in, etc) that I’ve become neurotically loyal to this team regardless of my own professional development. Because it’s totally true: I could leave here and have the opposite experience wherever I land, and frankly I don’t think I have the patience to work through the struggle of finding homeostasis again. Just thinking about leaving makes me want to puddle myself into a long nap. Ha.

  5. Hills to Die on*

    I wish you nothing but success, happiness, and remission. Much love you.

  6. Kuododi*

    As someone who also has a….”complex medical history….” I was delighted to see your update. I wish you continued good health and all the blessings life can bring.

  7. Fortitude Jones*

    As a fellow chronic illness sufferer who has just resigned from her tedious 8-5 office job and will be working remotely, I’m happy for you and your update, OP. It’s not easy to be ill all the time, and you’re absolutely right that the work environment a chronic sufferer deals with will make a lot of difference in how we feel day to day. I hope you get everything you wanted, OP, and that your hunch about your manager’s intentions are right.

    1. Princess Consuela Banana Hammock*

      Co-signed as another person with a chronic autoimmune disorder :) OP does a great job of breaking down ways of tackling unpredictable (yet persistent) health concerns, and the attitude/outlook stuff is really important for living through it (it is so easy and normal for mental health to suffer when chronic physical health issues pop up).

      1. AnnaBananna*

        Maybe we should all start am AAM Spoonies online support group! ;) There are just some scenarios that are so illness-specific that I don’t think could be accurately addressed during the open comments. Especially when you need concrete advice and not judgement or confusion by the non-ill.

    2. LynT*

      Co-signed as well from another person with a chronic illness (lupus), and I am also currently on leave while recovering from an unrelated surgery. Like AnnaBanana wrote above, I am loyal to my employer, largely out of fear of starting over somewhere else.

  8. your favorite person*

    I just love this update. Go OP! As someone with a chronic illness (cystic fibrosis) and full time worker (and ambitious person to boot!) I feel this on so many levels. I often have to say to myself, “None of this means anything if I don’t have my health.” That is to say, you have to prioritize your health FIRST, then work on everything else. For me, that means taking the time to treat my illness, taking time off, being honest with myself and others when I need to step back and being KIND to myself.
    You seem to be managing this tough situation amazingly well and I’m proud of you! It’s not easy to try to balance work and illness and you are doing it!

    1. OP*

      Still working on prioritizing myself. It doesn’t come naturally to me at all. I’m actually getting myself a therapy cat – there’s something about pet and plant care that reminds me to take care of myself. It’s like “Okay, it’s time to take care of the other living things, and also me!”

      1. MayLou*

        My cat was a huge help when I initially developed anxiety (although I’ll admit her desire for me to stay sitting down so she could snuggle didn’t do much to reduce the mild agoraphobia that came along with it… The dog we now have was the cure for that one!). A therapy cat is a wonderful idea.

      2. your favorite person*

        Prioritizing yourself is absolutely a skill and one that you can strengthen over time! I love the idea of having plants and animals as a reminder for self care. Whatever works for you, do it.

      3. GreyjoyGardens*

        I have a friend with a chronic auto-immune illness and he LOVES his “therapy cats” (he has two, got them as littermate sisters). Their snuggles and purrs do him a world of good.

      4. JSPA*

        this may seem too simple, but something as setting multiple daily alarms (not just pop-ups that you can ignore) for….remembering to stretch, drink water, walk around…can make such a difference, if you’re not used to putting your own care and feeding first. It also gets you away from anyone who’s monopolizing your time at the moment. (Clearly, it was something prescheduled and important, if you set an alarm.)

    2. AnnaBananna*

      I just wanted to give you a cyber hug for continuing to work FT with cystic fibrosis. I lost a childhood friend to it years ago and I know how hard that struggle can be. You do you, boo!

  9. Karyn*

    You and I have been living parallel lives. I got my hashimoto’s diagnosis this year as well, after months and months of sleeping for entire days without meaning to (I work for myself which means I don’t get in trouble but I DO miss out on billing). The thing someone here told me once on an open thread that helped me most was that this isn’t some kind of moral failing – this is your body trying to survive. Naps are your friend. Modified schedules are your friend. Supportive coworkers and bosses are paramount. You’ve seemed to have found a great balance of all of these, and I’m so happy that you’re on the road to recovery, such as it is. Take care of yourself!!

  10. JJ Bittenbinder*

    What an awesome update! I especially loved:
    Ultimately, I decided (stubbornly, as some commenters noted), “Hey, this chronically ill thing is not for me.”

    Because that’s me! I have two diagnoses for things that frequently cause people to leave the workforce and go on disability, and that’s exactly what I did for a few years. But the need to re-invigorate the part of my identity that values being a professional XYZ drove me to seek out ways in which I could reclaim my life, as I defined that. Others will define it differently (and, to be sure, quitting the 8-5 life certainly counts as “reclaiming your life”) and that’s what makes the world go ’round. But, crippling poverty notwithstanding (I could write an entire dissertation on that!), life on SSDI was not for me.

    It took a LOT of fits and starts, and some great work environments and some not-so-great work environments, but I’m in a super place now, career-wise. One of my conditions has been pretty brutal lately, but being at home and not working wouldn’t actually change that and may in fact make it worse. We all have to find that balance.

    My hope is that the adult world is more accepting of all of the different ways we can be adults by the time my kids get there, and work is one facet of that.

    Best of luck to you, OP.

    1. OP*

      STREET SMARTS! (I saw the name and almost burst out laughing, how great). Best of luck to you too!

    2. AnnaBananna*

      I’m the same way. I absolutely have to work. Sure, money is grand, but the cribbling depression of me staying home and not working? Not worth it for my sense of self. The only major time I took away was not working for two months in the very beginning, shortly after diagnosis but before care was truly implemented, when I moved to another state. I even get depressed when I have staycations, even when I desperately need the rest.

      All that to say, good job you. This is your life; paint it as you need in order to flourish.

  11. Ladylike*

    OP, you’re a rock star! I’m sorry you’ve received such a devastating set of diagnoses, but kudos to you for keeping a positive attitude and not giving up on your goals! I wish only the best for you!

  12. It’s A Bird, It’s A Plane, It’s SuperAnon*

    OP, I actually started tearing up reading this. I remembered your original letter and think about it and Alison’s advice on my own bad days. While my issues are mental illness rather than autoimmune diseases (you really hit the jackpot!) you’re so right that it’s not a moral or personal failure to be “unhealthy”. I’m so happy for you that your team and manager have been supportive and haven’t discounted you from raises and promotions. Your humor and outlook are so encouraging too, it makes a huge difference long term. Best of luck to you in finding your new normal!

    1. OP*

      I struggle with depression and anxiety too – for me, I’m suspecting a lot of interlinked issues relating to inflammation of various parts of the body. I’m hoping that working on “inflammation” in general will help with everything. I’m glad that by sharing my experiences somebody like you can feel a sense of solidarity too. Best of luck to you!

  13. Lana Kane*

    I can see why you’re killing it at work – your general outlook is awesome. It also sounds like you’re surrounded by great people, which absolutely can make or break even the most dedicated employee. Best of luck in managing your health and career!

  14. RJ the Newbie*

    This is an excellent update. Congratulations, OP. Life hasn’t been easy for you, but you’re taking your life and doing great. You are exactly the type of person who should be in a leadership role.

  15. What’s with Today, today?*

    I read your letter nodding my head. I was diagnosed with Crohn’s in 2008 (after suffering with no diagnosis for four years despite repeated trips to specialists). I take Imuran & Humira and get all the cancer screenings and labs associated with Imuran. I’m seeing a dermatologist today b/c the gastro thinks my Hunira injections have caused Psoriasis (yes, it helps some with psoriasis, and can cause it in others. Yay.) And this ”chronic disease thing ain’t for me” either. Pay attention to your body, you’ll become very adept at knowing what you can & can’t do and it differs for everyone. Hugs to you. It’s not always fun but you can live a very full life. I still work an incredibly fast paced job, am a mom & wife, volunteer, and set on three important local boards. I work through pain, a lot, but a full life doesn’t end with chronic disease unless you let it. Best of luck to you.

    1. OP*

      We sound like similar people! Sometimes I wonder if we’re sabotaging our wellness efforts but then I think, how boring would it be to feel well and then not do anything because you don’t want to feel unwell! Good luck with everything

  16. Lepidoptera*

    Your update sounds like it’s coming from a place of goal-setting and positivity, which is great to see. Your tone in your initial letter sounded somewhat unwilling to let yourself off the hook, so to speak. It’s wonderful that formal diagnoses have allowed you to direct your attention away from blame and towards healthful actions.

  17. Move Over Thrawn - Florian Munteanu is BIGGER than you!*

    I am so glad for you, truly! I wish we all had this kind of supportive environment but sadly, I know I don’t. And I work for a church (do NOT look to a church employer for compassion, people. Trust me on this one). My co worker was laid off last year because we outsourced her bookkeeping role (which is now considered a failed experiment), and her health was just awful. A laundry list of stuff that she had/has to deal with. That reality played a large role in why they decided to outsource.

  18. RG*

    As someone with chronic illnesses, thank you for taking the time to write in. I especially love the sentence “ill does not mean incompetent.” This is such a great update.

    1. Fortitude Jones*

      I loved that, too, because sometimes, that’s exactly what some employers think. It’s infuriating.

  19. blink14*

    Such a great update! I have a primary immunodeficiency and suffer from fatigue (potentially Chronic Fatigue), and the process of getting my immune deficiency “officially” diagnosed has taken about a year since finally landing with a genuinely concerned and interested specialist, and I’ve started immunotherapy infusions. I’m constantly sick, always exhausted, and being open with my manager, plus an amazing sick time allowance, has been hugely helpful in navigating a full time job plus being sick and now treatment time.

    All of this has made me think about how so many people have “invisible illnesses” and you really never know what someone might be going through. Stay strong and I wish you the best!

  20. PersistentCat*

    I am so glad you found a supportive environment in which you can take care of your physical self AND still grow into a leader within the organization.
    I have found that to be a huge ask, what with autoimmune diseases and ADHD/major depressive issues…and so many people think they know what hashimoto’s is, and write it off as not a big deal. To me, it has been a big deal. It means that I only have the energy for a few long days (exceeding 6 hours active time) before I need to recover. I sleep 10-12 hours per day during a flare up; thyroid replacement does not FIX this, it just helps level it out some. Unless I’m wrong…then I have the doctors appointments etc omg too much overwhelm.

    Basically, your letter gives me hope. I hope that you continue to grow into the professional you want to be, and that all of us who need similar accommodations to give 100% and contribute to our workplaces are able to find them one day.

    1. OP*

      Hope is SO important. Keep nurturing your hope! Celebrate small victories so you don’t get bogged down in the stream of difficulties. Good luck with everything.

  21. (Mr.) Cajun2core*

    Glad to hear you are feeling better and getting things worked out. I also have fibromyalgia, so I know how chronic pain can be so tiring.

  22. Deryn*

    What an awesome update! I also have inflammatory bowel disease (officially ulcerative colitis, but with some weird features that leave the door open to amending that diagnosis to Crohn’s) and I love hearing about how other people have navigated their lives with their chronic illness. It’s perspective that can be really hard to explain to those who haven’t lived it.

    1. OP*

      This is so gross, but so funny (I think) … my sibling also has UC and got tired of people peer pressuring him to “just try this” “take a bite” etc. Now he says, “Oh, I would, but I don’t want to sh*t blood later, thanks!” You have to know your audience for that one but I think it’s hilarious and it definitely makes the “helpful suggestions” stop.

      1. esra*

        Oh my goodness, people cannot wrap their head around non-allergy restrictions. I’m also with the anemia and Crohn’s and now at restaurants I’m just like “Yea, I really just don’t’ like nuts in desserts. No allergies.” because everyone has an opinion on how to cure your autoimmune disorder with like. hemp and the wishes of children.

        1. Deryn*

          It’s definitely tough! The diet that I have found works for me (low fiber) is about the opposite of what’s recommended for the general public, so I do occasionally get some incredulous responses to my meal choices. Depending on who I’m with, I sometimes make the call to just say I’m a picky eater.

        2. AnnaBananna*

          Oh, for real on the hemp products. I don’t know how many times someone has handed me CBD or suggested it as a cure-all for everything related to my fibro. I’m like, sorry folks. First, I’m on nerve pain meds and light opiates, CBD is like half an advil compared to what I already take – if that. Second, I am not paying $200 month out of pocket for pain relief.

          Oh, and the most recent ‘here, try this’ CBD touter was my mother. O.o

      2. Deryn*

        Ha! I use the “sh*t blood” phrase occasionally as well – being that graphic can sometimes hammer home how serious things are while still keeping some humor about it. Especially with diet, it’s hard to give an explanation with the proper nuance to a casual acquaintance. It’s just way too much to get into! Sometimes I’ll give them the ol’ standard “The medical literature hasn’t reached a consensus about diet’s role in IBD, and anecdotally results vary from person to person, but I’ve spent the last 15 years studying how my own body reacts to certain foods under the guidance of my doctor and dietitian,” but it’s not nearly as fun. The treatments have come so far since I was first diagnosed, though! Maybe someday I’ll be able to eat whatever I want with no repercussions :)

  23. SezU*

    Crohn’s sucks, to say the least! But I’m glad you at least have a diagnosis for that and the other things. All the best on this journey.

  24. Xingcat*

    Hooray for bosses and coworkers who understand that our bodies sometimes are the ones in charge, and we have to be kind to ourselves when they are. As someone with a chronic disease (that 15-20 years ago would be considered terminal), I know there are good days and bad days, and knowing that I need to take it seriously and with compassion for myself is key. I’m glad things are going better, and I hope the OP is well on her way to a leadership position as she suspects!

  25. Tisiphone*

    Hooray for good news! Fist bump of solidarity on the Hashimoto’s and anemia, which I have also been fighting since my late teens. Mine is under control now. Back then, normal felt like a power surge.

    May the good news keep getting better!

  26. dealing with dragons*

    I feel for you OP! I also have Hashi’s, and had anemia when I was diagnosed. At diagnosis I was coming home, sleeping, then waking up for work. I’m now on the other side of the spectrum (just had a TSH test of .08 lol) and it’s certainly a roller coaster! It took me 10 years to get diagnosed and to constantly have people tell me to sleep more (was sleeping 16 hours a day?) or like….take vitamins? gets tiring (heh pun).

    oh well, in the inevitable apocalypse we will survive longer due to lower caloric needs. seems reasonable.

  27. Bee's Knees*

    Good for you OP! My mom has an autoimmune disease, and I see how hard it is for her to climb out of that hole sometimes, so I know how hard you must be working. I’m glad you’re doing better.

  28. Tangerina Warbleworth*

    Well of COURSE your manager wants to promote you to a leadership position. You were suddenly thrown into an immensely challenging position (fellow chronic illness sufferer here) and you handled it. You’re handling it now, as best as it can be dealt with. THAT is leadership — bless your employer for recognizing that! — and that is what employees just coming up need to see from a leader.

  29. RainbowsAndKitties*

    Love this update, especially “ill doesn’t mean incompetent”. This story really resonates with me and I relate to LW. I was completely knocked off my feet by a hospital stay and diagnoses of a severe and persistent mental illness. I lost my job because I couldn’t return to work, and could not keep a job for over a year.. Now that I am medicated (and doing everything else I need to do to stay well) I have been much more stable and happy to return to working full-time. I’m glad things are working out well for LW!

  30. Sara without an H*

    Great update, OP! The only quibble I have with your letter is where you say you “somehow finagled a raise.” You effing earned it, and your boss, obviously a smart person, had the wits to see that.


  31. Wantonseedstitch*

    Oh man, LW, you have a lot going on. I have colleagues and friends who have to deal with chronic illness while working full time, and they’ve talked about how frustrating it is when their body doesn’t allow them to do what they eagerly want to be able to do, and about the concerns that others might see any kind of reduced schedule or workload accommodation as unfair or a sign that they aren’t working as hard as they could. It’s tough, for sure. But you sound like someone with a really determined attitude who wants to give as much as they can in a job they love, and I think I’d be delighted to be your manager. Just make sure you always remember that self-care is actually a primary work responsibility for you, even more important than any project or assignment! Because if you neglect it, your ability to achieve success on any of those projects or assignments is going to go waaaaay down. You’ll fid the balance that works for you long-term. It sounds like your employer is hip to the idea of “reasonable accomodations,” which is great. I wish you luck in navigating this!

    1. OP*

      Still working on making “self care” a priority. Sometimes it’s hard just knowing what kind of self care I need – like last night I had to decide: wake up early for yoga, or sleep in? which does my body need more? I went for sleep and that was the right call, but I’m not always right. Someone said it would take about 3 years to really understand the ins and outs of my conditions, so I’m giving myself a very gentle learning curve.

  32. BookishMiss*

    OP, I’m so happy for you. This is a great update!

    “Ill doesn’t mean incompetent” needs to be cross-stitched on every cubicle wall worldwide.

  33. RUKiddingMe*

    OP this is so great. It took me twenty, yes twenty years of back and forth, dubious doctors (“but you’re young!”), hostile bosses, unhelpful family, etc., etc., etc., and a full on two months in the hospital in a coma before I got the help I needed. Apparently I was the only one that thought I was ill…

    Embrace fully everything now and going forward that anyone will help you with. Chronic illness isn’t pretty but it can be done.

    My best advice: be willing to spend money to take care of the crap you don’t feel like doing on a regular basis. House cleaning? Call Merry Maids. Yard work? Get a gardener. Groceries? Order online… Trust me.

    1. AnnaBananna*

      DUUUUUDE. I totally concur on the online grocery delivery. It has saved me so much pain and anxiety. And I think the charge is $5 for delivery. Like, how is this even possible? Such a smart suggestion!

  34. Anonymous Aspie*

    OP thank you so much for writing in.

    I wasn’t diagnosed Aspie until I was an adult, and for a while it destroyed me. Even now I really struggle to reconcile the “disabled and constantly needing adjustments / struggling / hitting a wall” with the “driven, exceptional, high performer” identity I’d been carving out for myself all my life. Everything I see geared towards disabled or chronically ill people is about getting the bare minimum, about scraping by. I want to be a driven, exceptional performer even though I have a disability! But I just don’t meet or hear from people who feel the same.

    Your update is brilliant because it’s not some inspirational goop written by someone who doesn’t get it. You’re a real person, who is struggling with all of the things, and is fucking rocking it anyway. You’re not going for “awesome, considering…”, you’re just going for “awesome”, full stop. I am incoherent right now with how much I relate to that. Thank you for sharing this with us, it means so damn much to people like me.

    1. AnnaBananna*

      It can totally be done – but you have to give someone else up in it’s place. Recently I read that the saying that woman can have it all has turned into ‘you can have it all, just not at the same time’. Or something like that. And I think it’s especially true with a disability. Have you read anything about the spoon theory or ‘spoonies’? It’s a similar concept.

      Keep fighting the good fight! :)

      1. Anonymous Aspie*

        Yes I’ve read about spoon theory and I definitely relate. Again, though, I never hear about that sort of thing applied to a work context. All the stories we read about “high performers” or “career women”, they might have kids, but they’re never disabled or different. And most of the people I’ve met with disabilities in a work context seem jaded and tired (as well they might be), and just don’t seem to want to “fight” any more. So it’s rare and rather wonderful to read about another person going for “high performer” too, rather than “just about managing” (which seems to be our usual story).

        1. AnnaBananna*

          I agree. It’s inspiring to this ambitious and disabled employee too. :)

  35. Close Bracket*

    Just FYI, in case anyone isn’t familiar with the origin of “peanut gallery:” it predates Howdy Doody. Back in Jim Crow days, the cheap seats at shows that gave rise to the name (bc the occupants threw peanuts, as the lore goes (btw, rich people in the front seats also heckled performers and were generally obnoxious–the current standard of sitting silently during a show didn’t always exist)) were also the segregated seats where African Americans *had* to sit.

    Everybody draws their language boundaries in different places, and this isn’t meant to be a scoldy FYI, just an FYI. My own personal decision has been to phase this phrase out of my vocabulary bc learning the history has made me uncomfortable using it.

  36. CRspring14*

    I have Hashimoto’s thyroiditis. From what I can tell, I somehow burned myself out in my early 20’s from being an active person, exercising rigorously, and regularly, and working, going to school. I work in a lab, on my feet all day, and that’s when I got the diagnosis. Since then, I’ve learned that gentle exercise is best for me, and I can still maintain my physique with less aerobics, and less strenuous aerobics, but I also unfortunately, I don’t fill my calendar with social events, I’m too tired to show up, and believe me I’ve tried. For the OP, that’s some very difficult diseases to live with. Good luck.

  37. Ella*

    You really hit it on the head with how hard hearing “are you feeling better” can be! I don’t have a chronic illness, but I did go through a very long, difficult health period and having to tell people “actually I’m worse now than the last time you asked” could feel incredibly demoralizing. I’m impressed by how graceful and succinct a response you found, though. Hopefully your coworkers continue to treat you with empathy and understanding (and hopefully you can keep treating yourself with the same!)

    1. Anonymous Aspie*

      Yeah. When I was in the worst of the post-diagnosis mental health horror, my boss would always ask “how are you today”, every one-to-one meeting, like she actually meant it. And I said “I’m fine”. I know Allison’s views on this innocuous phrase and they’re completely reasonable, but it didn’t stop that being like a punch in the gut every time I had to say “I’m fine” when everything was falling apart around me and she (who had the power) kept putting off doing anything about it.

  38. Wendy Darling*

    It me!

    I’m glad I was helpful. I’m also still working on being kind to myself and reminding myself that illness is not some kind of personal failure, but I’m hanging in there! I also have a vicious attack immune system — sad fistbump?

    1. Indigo a la mode*

      Enthusiastic fistbump for both of you! I super admire you chronic illness-battling rockstars who are conquering life despite daily struggles that I can’t even fathom. Because you are, indeed, conquering it. It you indeed!

  39. Paralegal*

    Awesome update! I have Hashimoto’s thyroiditis and anemia, too, and I know how hard it can be to function some days. I wish you all the best as you navigate life.

  40. Happy Pineapple*

    While I’m sad to hear that you’ve joined the chronic illness club (Welcome! It sucks, but it gets easier to manage.), this is a fantastic update. I’m so glad to hear that you have a supportive and accommodating workplace, and that you haven’t allowed your illness to dampen your spirits. You are so right, and I say it all the time, that health is not a moral obligation! It does not define you. It just happens to be something you live with. You’re doing great!

  41. IrishEm*

    OP, thank you for updating. I’m dealing with an undiagnosed chronic illness (or possibly plural like yourself. Misery really does like company.) and I find your letter giving me hope that my illness will not define me, as yours have not defined you. I am feeling horrifically guilty about the number of sick leaves I have had (unrelated illnesses that just get so much worse with an underlying condition) in the last six months.

    I’m debating about requesting accommodations and your post is giving me hope that there are reasonable employers out there (possibly my current one) who will support someone going through what you are going through, what I am going through, without judging or shaming us and people like us, and finding us wanting.

    Thank you for the hope you have given me with this thoughtful letter. The road will be dark and difficult but not without hope.

  42. overcaffeinatedandqueer*

    I’m glad she got it figured out! I am wondering now how to approach something with work and just in my life as well.

    My anxiety has been bad lately and I lost my grandfather and worry for my grandmother. For some reason, I have started stammering in front of basically anyone except my wife, my two friends, and a close coworker. It’s a huge pain but I have concealed it at work because we’re 99% e-mail. My parents don’t know because I don’t do this in other languages. They use German with me.

    I just now went to order a coffee and I couldn’t manage “grande almond milk latte,” so I asked for a pen. I’m going to be doing some family travel and vacation this summer, so I just wonder for anyone that’s worked food or retail- should I keep writing stuff down to make the line move and not annoy people, or s it OK to try?

    1. L. S. Cooper*

      From my time in retail, it would definitely depend on how many people are in line. If it’s slow, I’d be generally content to let someone work through it. If there’s other people getting delayed, though, I’d be miffed, in the same way I’d be annoyed with anyone who delayed while ordering.

    2. I heart Paul Buchman.*

      I would not in any way suggest a person with a stutter is holding up the line. Stuttering is a condition out of your control! I’m horrified that anyone would even suggest you do anything other than speak while they listen!

      My son had (has?) speech fluency problems and after 3 years of speech therapy is 99% stutter free. Good luck to you – my advice would be that early intervention is usually the most effective.

  43. Kitty*

    Wow, you’re studying on top of working and also managing a chronic illness? You weren’t kidding about being an over achiever!! Best of luck with everything! ❤️❤️❤️

  44. Flower*

    Holy crap, as someone with some chronic issues that have been rough recently was a great read. Thank you for validating so many of the ways I feel and the fact that we can do it, even if not exactly in the way originally planned. I’m so glad you’ve got good support.

  45. Amelia Pond*

    I’m always happy to hear good updates, with this one more than most. It can get really demoralizing to become chronically ill and feel like your life is over, but this just goes to show what’s possible and to never give up hope. And I am truly, truly happy you’re surrounded by such wonderful colleagues. It gives me hope that the business world is finally changing on this in places (my mom suffered health problems when I was a teenager including ADHD, depression, fibromyalgia- back when the vast majority of doctors didn’t even believe it existed- and breast cancer. How she was treated makes me sick/enraged to this day). I have no doubt you’ll continue to persevere and reach heights you never imaged possible.

    I do want to mention something, something I’m absolutely sure was not intended to be negative (and I want to emphasize is my experience, and the experience of others with chronic health problems, who have given me permission to share. So feel free to take this as a grain of salt- in fact, I insist you do!). Saying, “Hey, this chronically ill thing is not for me.” comes off like it’s actually a choice and for most people… well, it’s not. When someone chronically ill hears that, they hear “It’s your own fault you’re still sick.” Healthy people hear it as, “Not getting better is a choice people are making. They must be lazy or doing it for attention.” Again, I’m not saying that’s what you’re saying, but it is what people will hear. I’ve been dealing with chronic health issues for 25 years- since I was 9- so I have more than a little experience dealing with how everyone else responds to being sick or someone responds to others being sick. Truly, the arena of medical, and how it impacts people, is the only thing I’m an expert at, as I’ve had no other choice but to become one. It most definitely isn’t fair- little in life is- that people judge an entire group by a single person and there are definitely times where the best thing to do is give both middle fingers to expectations. I just think people should be aware of those expectations so you can get the maximum impact from those fingers (and obviously I don’t mean physically giving people the bird, or even chastising them. It can be as small as saying, in general, “It really makes me uncomfortable when people expect me to be a representative for ALL people with chronic health issues.”). I’ve found the maximum impact comes from emphasising that I’m speaking from my own experience, as I’m doing here.

    I really did question whether or not I should respond to this at all. I asked the advice of the one person that’s been with me through everything and she thought I should. I’d be silly not to listen to her, as she’s my mom, and most definitely smarter than I am.

    1. I heart Paul Buchman.*

      I’m glad you shared this. Reading the update and the comments I felt a sense of the idea that you can ‘will yourself better’ if you try hard enough and have a positive attitude. I do not think it was the intent but I feel like the poster is almost trying to make herself worthwhile of any help she has received when really she is worthy of help regardless of how well she is managing to perform. Regardless, I hope that other readers take this story as a good news story for the op not a referendum on how well they are doing in their own struggles.

    2. Rebooting*

      Yeah, that line bothered me a bit too. This chronically ill thing isn’t for me, either, but that doesn’t change the fact that I *am* chronically ill and no amount of ambition or stubbornness (and I have plenty of both) is making me any less unable to work.

    3. Anonymous Aspie*

      TBH I read it as resisting the sad story chronically ill and disabled people are constantly drip-fed about our lives. As I’ve said in comments above, I LOVE this update unreservedly. If you are disabled and you decide, fuck this, I have always been a high performer and I am going to keep being that way, then you are on your own. There are literally no stories about people who do that. This is the first I’ve ever seen (having identified as disabled for about 5 years). There are no stories about disabled people in which they are just people, the focus is always about struggle and “just getting by”. The disability defines the entire identity. (Although I totally accept that “just getting by” is the best that is possible in some circumstances, and that is fine, and there is no judgement intended. But it’s not the whole story.) If I were in a story and I sang, it would not be a story about me as a brilliant musician – it would be a story about an autistic girl who overcomes all of her struggles to do a thing! A whole thing! I want stories about brilliant musicians who just happen to be autistic / blind / wheelchair users / have Crohns, to be about brilliant musicians. So while I can see how it comes across as insensitive, I think this is more about defying the narrative than blaming people for being sick or disabled.

    4. Another Chronically Ill Lady*

      I agree, thank you for posting this. I hope that the OP can continue to work at the level she wants to, but if her health doesn’t allow that it doesn’t make her a failure. Our worth is not tied to our productivity.

  46. Green Glass Goblets*

    Thanks for updating, OP, and I’m glad things have improved for you. Realistically, of course a perfect life as a perfectly healthy person isn’t going to fall from the sky, but submissions and updates like yours remind me that it’s okay to keep going. Thanks, and good luck :)

  47. AnnaBananna*

    (Holy jeebus, this ended up as a long comment. Apologies!)

    Fellow spoon-ie here (fibro, unofficially diagnosed thyroid issue of some sort and possible early diabetes and a random assortment of mental stuff), and I wanted to let you know that I have recently started using an app to analyze my sleep and it’s profoundly answered some long term questions I had about my fatigue. I was told years ago when I was diagnosed with fibro to expect to always feel tired, that fibromites can’t sustain REM, etc, etc due to whatever is kicking around our nervous system. Fast forward to me downloading the app, and forgetting to refill my lexapro, and suddenly it’s a game changer. The one night that I didn’t take my lexapro? Sustained deep sleep – and I felt fantastic. I am still in the testing phase (I downloaded it this week) but am cautiously optimistic and thought you might be interested. It’s free and called ‘Sleep Cycle’ (original, no?). There are upgraded features but for now, I don’t think I need them.

    You should try it! It uses the microphone on your phone and uses an algorithm to differentiate stages of sleep (and records your snoring, if you’re trying to track apnea or something I guess?). But get this – it also differentiates the breathing of your partner next to you. How cool is that?? I’m sleeping alone so it’s not a big deal for me personally but I told my doc this morning about it and she’s super excited since her BF is a snorer in denial. Ha.

    Anywho. Stay strong in your struggles. Find an outlet that is not work-related (I craft and read like I’m about it die), and make sure your diet is overhauled to include mostly organics. Pay attention to the heavy hitters: dairy, gluten and nightshade veggies. I found that diet truly impacted my pain day-to-day. The worst part is that this will also change over time. You may suddenly be able to handle gluten, or find that grapes give you a rash, fibro is such a bizarre condition. Oh! And physical therapy. I also had a slipped disc around diagnosis time and the pain from it seemed to set off my fibro pain. Lastly, get really comfortable with telling people no in your personal life. This will drastically impact how your week goes, and if you’re cruising through the farmers market and then going to an outdoor concert, and cooking dinner later? You will destroy yourself. Take it from your fibro elder. ;)

    Oh, I just thought of another one. Find a therapist that specializes in pain conditions and/or chronic illness. Also, my rheumatologist suggested NOT going to group chronic illness support meetings because his experience leading them over the years was that attendees tend to focus on the negative and they become a gripe session and that ‘nobody needs more negativity’. lol But, your mileage may vary…

    If you ever want to chat or have questions, I welcome you to reach out any time via Instagram (it’s mostly crafts and my dog, hehe) @splendorpursuit. :)

  48. ER*

    OP, your attitude is really inspiring, thank you so much for the update. I’m so glad you’re managing to stick in a positive head-space through all of this.

    One word of advice, I have a friend who had had his Crohn’s diagnosis since primary school and somehow nobody told him to avoid caffeine. He worked it out himself at age 30, told a doctor who basically said ‘Yeah, of course.’ and now his inflammation is drastically reduced. He can eat lettuce now! So if nobody has told you, you might want to cut the caffeine. Hopefully they did tell you and this tip is irrelevant.

    Good luck with your treatments. I hope it all goes really well!

  49. Sarah Biffy*

    I’m happy to hear you got your diagnoses. For those without chronic illness, that may sound strange, but actually getting a diagnosis and knowing it’s not all in your head and that now you can get treatment is a weight off like you wouldn’t believe.

    I too have fibromyalgia and also rheumatoid disease, lupus and Behcet’s disease. I also have ridiculously expensive treatments. If you haven’t already, talk to the drug company. (Many treatments for various autoimmune conditions as well as leukemia and lymphoma, overlap, and I’ve been on many over the last 19 years.) They all have copay assistance. Even if you have insurance. Back when I was still on my parents’ insurance and they were paying almost all my medical expenses, I started a new treatment that was about $24k for each infusion; I had two infusions two weeks apart, then two more every three months. It was a long story to start, but was having trouble with insurance and the hospital wouldn’t schedule me until it went through, even though I needed it right away. (I will never forget Dad on the phone with the hospital.) Anyway, he said, “Fine. I’ll pay for it. I’m bringing you a check for the whole thing right now. Schedule her.” And he did. I got the infusion. Even though my parents could afford to pay $24,000 with no notice, the drug company gave it to me for free after that. (I can’t afford that, and now I’m on a drug with a copay of “only” $3200 per month, but my rheumatologist did the paper work with Pfizer and I pay $8.)

    Also, you can negotiate with hospitals and labs. If you get a bill, call, tell them what you can afford, and they will work with you. Not only with payment plans, but they will usually write some off the total. Take it from someone with many, many hospital stays, ambulance rides and too many doctors to count over the last two decades. Be honest and don’t say you can only afford $20 if you can afford $2000. That’s crappy. They did provide a service and treat you. But they will work with you so you can continue to get the care you need. Good luck!

  50. Annabelle*

    Thank you for this! I’ve been going through struggles similar to yours – sleeping a ton, constant pain, chest pain, etc. I was diagnosed with fibromyalgia and costochondritis and it has been such a struggle to keep up with work, lifestyle changes, pain management, sleep, and having a life in general. You’ve reminded me to keep trying with doctors to hopefully make life a bit better. I cannot emphasize the mental toll that having these diseases causes, but knowing other people out there are also going through this makes me feel not so alone.

  51. sleepysaurus*

    OP, I’m so glad you sought medical assessments and now have more information about how to look after your health.

    I also live with a thyroid condition and it took me a long time to recalibrate my expectations after diagnosis, even though I take medication. My primary advice to you is this: remember that your body experiences stress from a multitude of situations, even when you are mentally excited and engaged. Plan more time to rest and recover when putting your calendar together.

    It’s obvious you take enormous pleasure in tackling challenges and fixing problems at work, and pushing yourself to perform at an elite level. Your body is your teammate, but one who can’t suppress its needs in the pursuit of other goals. I hope you settle into rhythms when possible and that you continue to find the flow that best works for you post-diagnosis.

  52. 'Tis me*

    You are so positive!! <3 As somebody else with a couple of chronic conditions (plus two small children so disrupted sleep… Sleep is so important for just about everything so that's fun) – it's so lovely to read how well you are doing, both at managing your conditions and at being a total rockstar!

    One thing I would say… The last few years I was at work (maternity leave means I was out for a few of them) I fell into a real "boom and bust" cycle: work as hard as I could to get on top of my workload, just about have time to think to myself how *manageable* it is like that, then get ill, and end up being off sick for 1-3 weeks. Come back, and have to play catch-up, so work as hard as I could and get on top of my workload (or relapse)… It's not sustainable and the periods of working flat out to try to stabilise my productivity added to the amount of time off sick that I needed. It was a chronic pain clinic that asked me questions that made me realise this is an actual real thing (and how destructive it actually is).

    I'm so glad your work environment is so supportive – a good manager etc can make SO much difference! Good luck keeping on slaying going forward!

  53. Dr. Glowcat Twinklepuff*

    Congrats to you, OP, from a fellow fibro & other stuff sufferer! I just wanted to add that you don’t need to give up your dream career because of illness, don’t even think about that! Just remember to work around your illnesses, never against them.
    I went to a time management course last winter and I asked the teacher how I could work at best when I am broken for so many days. His answer: “Do the most important/difficult things on your ok days”. My first thought was: “Well, thanks, Captain Obvious”, but it’s actually the best you can do. Trust me, you won’t feel so guilty on your bad days if you think about the many things you did the day before.
    Wishing you the best!

  54. Bookworm*

    Hi OP!
    I missed your original letter but am SO glad to your work has been so flexible and they are willing to work with you and even see you as leadership potential. You must be pretty awesome!

    Happy it sounds like it’s a good fit. :)

  55. Sarah*

    I was diagnosed with Hashimoto’s several years ago after being misdiagnosed for many years. I can relate to how much of a relief it is to find out what exactly is wrong. Dealing with a new normal was difficult, but a few years on, I feel like I have a handle on all aspects of my life and my health. I even have started back to University part time along with a full-time job. I have good days and bad days– I have learned when I can push through and when to say, “I need a bit of a rest.”

    I wish you all the best OP. I have my fingers crossed for you and much luck towards your doctoral degree. This Hashi-Warrior knows you can do it! :)

  56. Sharon Frank*

    For what it is worth – My sister had fibromyalgia for 20 years. She read the book, Medical Medium by Anthony William. It took her about a year, but she has not felt this good for a very long time. No more doctor appointments needed.

  57. Susan Montooth*

    Dear OP,

    You are amazing! Attitude, ambition, all great. I hope you can take it easy on yourself when needed though.

    As a side note, I share a couple of your chronic auto-immune conditions. Diagnosed in my teens, now nearing retirement from a long and mostly successful career. Now, this won’t be something you can control, but from my experience total remission from some of those conditions *can* happen. Something to hope for at least.

    Wishing you all the best!

  58. Business Cat*

    Oh, OP, I kind of figured something like this would end up being your path after reading your original letter. I have fibromyalgia as well, and can only work part time with my symptoms. I tried very hard to make my full time job work, but like you I was falling asleep at work constantly, but couldn’t keep up with the workload. My bosses weren’t quite as understanding as yours and made my life miserable (they gave me a flexible start time, but I had to text my manager every morning to tell her exactly when I was on the way in, and they put me on FMLA, but put me on a PIP and kept finding reasons to reprimand me until I felt I needed to find a new job). I truly admire your dedication and resilience, and I hope everything works out in the way you deserve.

  59. Revanche @ A Gai Shan Life*

    “For a while, my coworkers would ask if I was feeling better (daily), until I got around to explaining, one-by-one, that I might never actually feel better and that I needed to just take some time to find my new normal (but thank you for your concern!).”

    I find this particularly brilliant. I’ve had fibro for most of my life and struggled with being asked how I am with the common expectation that I would “get better” and it never occurred to me to explain that I won’t have a “better” in the sense that they’re thinking of (back to the old normal) but rather I will find a new normal.

  60. robineer*

    I’m so happy for you OP! I have crohn’s disease, and am currently in remission. Back when my symptoms flared constantly, I was working in a very toxic and demanding work environment. I was only able to get through it because of my amazing manager and teammates. We all kind of banded together and encouraged each other to find other jobs while trying to manage our workload.

    Dealing with a chronic illness, and in your case, multiple chronic illnesses, seems impossible at times. You’re strong, and I’m so happy you’re being recognized for your hard work. I’m rooting for you!

Comments are closed.