update: a medical issue means I have to keep saying no … but I don’t want to over-share

Welcome to “where are you now?” season at Ask a Manager! Between now and the end of the year, I’ll be running updates from people who had their letters here answered in the past.

There will be more posts than usual this week, so keep checking back throughout the day.

Remember the letter-writer whose medical issue meant she had to keep saying no, but she didn’t want to over-share? Here’s the update.

I’m writing with an update to my January 2022 question asking how to say no to things without oversharing about my chronic medical issue.

Your advice was very helpful—you suggested losing the “unfortunately” when I explained my limitations and immediately following up with a work-related question. This worked well. The comments from your readers were also great. In particular, many readers assured me that it was not uncomfortable for them to express sympathy for someone who’s sick! I realized that they were right. It’s a normal, human reaction and I wasn’t imposing by sharing my situation.

For the year following your response, I became more candid with colleagues and other work contacts about my limitations. This was necessary, as I was getting sicker. It was fine. I did what I could and people continued to consult me and work with me as I was able.

I had to stop working entirely last December. I now spend most of my time asleep or resting, but I go for a walk most days and I see friends occasionally for a movie, a walk or a low-key dinner out. I travel to New York (from Ottawa) about once per month for a medication clinical trial. The travel is tough, but I manage. My family, boyfriend, and friends have all been wonderful. I have long-term disability insurance and Canadian socialized health care, so money is not a concern.

I’m less devastated about this than I would have expected. When I was a kid and in university, a huge part of my self-identity was that I was a great student. As an adult, I defined myself primarily by my career. I didn’t excel at work as I was so limited by my illness, but I had an interesting, technical job designing tax law for the Canadian government. I really enjoyed it. However, it’s not possible anymore and I’m treating that as a fact rather than as a devastating blow. I’m probably able to do this due to a decade of “acceptance” therapy with a wonderful psychologist.

Oddly, my mental health has never been better! When I was working, I blamed myself constantly for not trying harder. I knew I was sick but I figured that I should be able to push through it since other people were doing fine despite having children, disabilities, long commutes or whatever. Now that I’m too sick to even manage grocery shopping for myself, I see what I did manage to accomplish in my career as a success rather than a failure.

I will probably never get better. New medication will make my life more comfortable, but I’ll likely never be well. I hope to be ok enough in the future to do some volunteer work, but there’s no way to know at this time.

{ 62 comments… read them below }

  1. HugeTractsofLand*

    Thank you for sharing your update! I’m so glad you’re in a good mental space and have a team of people supporting you. I hope you find satisfaction and new accomplishments- whatever those look like- in this new phase of life.

  2. Medical Librarian*

    Thank you so much for posting this uplifting update. I’m so glad you have the support from family, friends, and the system that you need. Sending you all the best wishes on your journey.

  3. JSPA*

    It can be so liberating when one comes to the realization that one is allowed to be “retired early,” and do only what your mind and body (and friends and family) comfortably make possible and enjoyable.

    But if you ever need to tell yourself a reason to feel 100% fine with that, I’m a firm believer that lowering cortisol (though lowering stress) and protecting one’s current level of function can add weeks or months or even years to the time between “can’t help others” and “need a lot of help from others.”

    Not that “need a lot of help from others” is wrong!

    But “self-sufficient for a good percentage of daily bodily care” is a lot more convenient than the alternative.

    I’ve heard it phrased as, “I’m volunteering by doing care of future-me.”

    Examples: time spent on plans for making one’s living space more navigable; grab bars and attachments for hoists or lifts; getting rid of clutter while one can be directly involved in the choices (and while it still feels currently optional).

    1. OP (Tara)*

      This is a great perspective JSPA! I’ll use it the next time I find myself pushing too hard.

      Also: grab bars are amazing! I don’t need them at all for mobility or balance purposes, but I got really attractive looking bars—masquerading/doubling as soap dishes and shampoo shelves— installed when I bought a new condo many years ago, figuring that I’d need them eventually. I love them!

  4. English Rose*

    So pleased to hear this update. Yours was one of the letters I think about from time to time and wonder how people are doing. While I wish your health was better (obviously), I’m happy to hear that your state of mind is so positive. Wishing you all the best continuing to negotiate this.

  5. Tehanu*

    This is a lovely update. I am a PS in Ottawa too and I know the culture. I am glad you have found some balance and I hope that your health improves. Sending best wishes!

  6. emkay*

    Thanks so much for sending this thoughtful letter. I hope I will think about your framing here when I encounter capacity changes in my own life.

  7. Monica*

    OP as a fellow disabled person who’s work was her identity and who is currently unable to work, thank you so much for this update. I am not yet where you are as far as acceptance goes, but it’s really hopeful for me to see that it’s possible. Thank you so much for sharing :)

    1. OP (Tara)*

      I’m sorry for your loss Monica. It really sucks to have to stop working.

      My update makes me sound much more ok with this than I actually am. I definitely don’t “accept” my illness, whatsoever. I hate it and I hate what it’s done to my life. I hate it every single hour of every single day.

      What I do finally accept is that it’s real, it’s here to stay and I can’t just push through it. But, that acceptance only came after my body shut me down completely by staying asleep for 20+ hours daily for several months. Eventually I surrendered and it let up somewhat. I’m still in bed for about 20h on most days, but only asleep for about 12h of that. I spend the rest of the day reading, watching TV (mostly British comedy panels lately), playing bridge online and listening to podcasts when I’m too tired or sick to do anything else. I go curling on Friday evenings and have just started swimming on Tuesday afternoons. This gives me a few days of recovery between each thing. If I try to do more, my body quickly shuts me down again. If I try to push through the exhaustion, it gives me brutal headaches, nausea or various other charming symptoms to get me to stop.

      More importantly is that I (finally) accept that it’s not my fault. It happened to me and there was nothing I could do about it. This acceptance was hard won.

      It took my psychologist many years to make me understand that acceptance is not a synonym for giving up. I haven’t given up and I continue to push myself to do things that are good for me. I give kale, exercise and mindfulness meditation their due. ;) I also do clinical trials for new drugs that don’t help but maybe something will eventually.

      1. BubbleTea*

        Taking part in the clinical trials is a huge contribution to society. Thank you for being willing to do that.

      2. allathian*

        Thanks for the update to the update. Seconding BubbleTea, taking part in clinical trials is a huge contribution to society, please give yourself some kudos for that.

  8. Jan Levinson Gould*

    Canada seems to have a much more humane approach compared to its neighbor to the south when dealing with citizens who have chronic illness. The fact that LW can deal with their illness and not worry about being destitute is something the US should strive for but will likely never achieve. LW seems to have a comforting acceptance of the situation and wishing them the best.

    1. Kai*

      Actually, no.
      The LW seems to have hit a good place, but disability monthly payments are about $1200 here in Ontario. That’s it.
      Our current government is systematically dismantling our health care, privatizing at an alarming rate & defunding necessarily servîmes (public health, nursing, long term car facilities).
      While I’m very happy the LW has stability, this is by no means the norm.

      1. OP (Tara)*

        Kai is correct, I’m in a particularly lucky situation for someone who’s sick. My disability insurance (70% income replacement and I keep my prescription drug, dental and supplemental health benefits) was a work benefit: the premiums were partly paid for by my employer and partly paid for by paycheck deductions. I also have upper-middle class parents who supported my education so I didn’t have any student debt. And, I was always too sick to have children, so I’m not supporting anyone.
        That said, even with the Ontario and Alberta governments defunding various important health services, Canadian health care remains a huge support. I have no clue what it would be like to have to worry about paying (or even think about paying!) a primary care provider, a specialist or for hospital care. I honestly cannot imagine how stressful that would be.

  9. Speechless*

    Thank you for this update. I suffer from chronic illnesses that make my previous Go-Getter energy impossible to achieve. It’s been incredibly difficult and I’m taking a lot of it personally, when I shouldn’t. It’s just a fact that I don’t have the energy anymore and when I push myself I get worse. I’m working with my therapist on acceptance but it’s difficult (I’m writing this through tears now).
    Thank you for the knowledge that we’re not alone and hope for the future.

    1. Miss Mantis*

      Just want to say, as someone in a similar situation: I see you, and it’s not your fault. I hope you will be as kind to yourself as I’m sure you would be to someone else struggling this way. (I know, much easier said than done!)

  10. Techie Boss*

    This update just fits so nicely with your original question! You could have framed it as “unfortunately…”, but the way you tell this story just makes me so happy for you and how you’re managing things through what could be a tough and challenging illness. And I’m sure it is at times, but so glad you’re able to enjoy the positives and looking forward with hope.

  11. SparklePlenty*

    Thank you for the update! I’m happy for you that you feel in a better place mentally. Best wishes!

  12. OP (Tara)*

    OP here. Wow! These comments are such a joy to read. I’m so grateful to everyone for taking the time to wish me well. I wish I could respond to each comment individually but, of course, I definitely absolutely cannot do that.
    So far no one has told me that I can cure myself by eating kale, exercising and doing mindfulness meditation, so that’s unusual and amazing! (No disrespect to kale, exercise and mindfulness meditation…they’re all great…)
    I’ll return later to read more comments and hopefully to respond to a few.

    1. Speechless*

      My best friend and I suffer from countless chronic conditions between the two of us. We joke all the time about the wild potential solutions people proffer to us.

      Have you tried yoga? Meditation?
      Have you tried eating an entire Himalayan salt block?
      Have you tried only turning in clockwise fashion?
      Try raw yogurt bathing on full moon nights! It worked wonders for my sister’s boyfriend’s niece’s first grade teacher!

      Thank you for your update. As someone who is both constantly ill and also defines myself in large part with my work, I struggle a lot with blaming myself for no longer being able to bring the energy the way I used to. I’m working with my therapist on acceptance but it’s hard. Thank you for giving us hope and the feeling we’re not alone.

      1. OP (Tara)*

        I haven’t tried the only-clockwise turning thing yet! Thanks for the tip— I’ll keep you posted.

        1. BubbleTea*

          I’m tickled pink by the implication that you HAVE tried eating an entire Himalayan salt block and bathing in raw yoghurt.

      2. Zombeyonce*

        Raw yogurt bathing isn’t going to do anything, that’s pseudoscience. The real solution to chronic illness is submerging your entire body in raw honey and sea salt harvested from Atlantis during a solar eclipse, but it only works if you’re inside a wine barrel settled in the very center of a deserted island in the middle of the Pacific. I can’t believe people aren’t taking advantage of this miracle cure.

      3. Freya*

        My ‘favourite’ was the person who, based purely on my blood type, recommended I eat a mostly meat diet. To fix, amongst other things, the lack of sufficient enzymes in my gut to digest more than the minimum RDI of protein for my size…

    2. Zombeyonce*

      Your comment that “I figured that I should be able to push through it since other people were doing fine despite having children, disabilities, long commutes or whatever” really got me.

      It’s so easy for us to go along with the idea that everyone else is doing fine and it’s just us that isn’t up to snuff. But what you see of everyone is just the external facade they put on; they’re likely struggling with things as well and the face they show to the world (especially at work) is covering a lot of difficulty. This isn’t to say that your illness is easy or similar to others’ difficulties but to know that people may be more likely to have sympathy and even empathy for your situation than you’d expect. Comfort given freely isn’t a burden.

      I try to remind myself of the “comparison is the thief of joy” adage regularly and it helps me give myself less blame and more grace. I’m glad you’ve managed to move in that direction with your psychologist! It has the potential to make such a difference in your mental health.

      1. ArtsNerd*

        It’s also heartbreaking how many people with chronic illness / disabilities feel like they aren’t sick enough to use accommodations or resources that can make their lives easier.

        Forums are flooded with with posts like “Is it okay for me to use a white cane? I’m legally blind but…” or “My favorite band is playing a club that’s standing room only. I’m heartbroken. ” or “My company wants to sponsor me for a service dog, but I’m not sure I should accept.”

        If more of us owned up to our needs sooner, it might go some way toward normalizing accessibility and inclusion in a real way for the people coming after.

        1. MM*

          I like to tell the people asking these types of questions that in a car-centric culture, glasses are a mobility aid. If it helps, it helps; you don’t need to enter some special category to “deserve” it, just like the people who need glasses to drive safely aren’t considered Sacrally Disabled.

          1. ArtsNerd*

            I love that.

            I also realized I was still doing the same. damn. thing. with some of my own “secondary” symptoms. Gonna get screen reading software set up on my work computer next week.

    3. ArtsNerd*

      This was very timely for me. It just hit me today like a ton of bricks that one of my symptoms that makes it hardest for me to do my job just… isn’t treatable. Even if we do eventually identify the underlying mechanism for it (medical mystery!) there’s not going to be a way to reverse the damage. There’s probably not going to be any way to mitigate future damage, either.

      I’m still hanging on at work, for now. But I’m not sure how much longer I have. I’m glad you’re doing okay.

    4. Miss Mantis*

      Oh my goodness, I feel like everyone in the chronic illness community has their “favorite” story of someone with no information telling you how to cure yourself (mine involves a Lyft driver and some very confusing religious questions…)

  13. mean green mother*

    I’m so glad to read this update. I resonate strongly with your experience because I have gone through something very similar. I was 28 when I became too ill to work (or shop, or shower, etc.) and it was an incredibly challenging blow to my identity. I’m so glad you began acceptance therapy ten years ago. I didn’t start until I was too ill to work, but it absolutely saved my life. From one sickie to another, congratulations on taking such good care of yourself, and may the future also bring joyful unknowns.

  14. spiriferida*

    Wishing you all the best, LW! I know well the feeling of ‘well I should be able to,’ so I’m glad you’re in a situation where you’re able to look at your accomplishments with pride – you should be! I hope you continue to find fulfilling things to surround yourself with, whether that’s volunteering in the future or a new direction that’s comfortable for you where you’re at.

  15. Dom*

    I’m not quite sure how an update can be both saddening and uplifting at the same time, but there we are…. <3

  16. Elsewise*

    Add me to the chorus that’s so glad to hear from you, LW. When your original letter was posted, I was healthy, working three days a week in-office, and still able to exercise regularly, do social events and volunteering. Today I was in tears by noon because a 1.5 hour virtual meeting was too long for me to sit up. It’s a bad pain day, but I’m facing the fact that my abilities have gone through a really sharp decline in the past two years, and I don’t know if they’ll turn around or if I’ll ever be at 100% again. I’m lucky that I work a fully remote job with a very flexible boss, but accepting the realities of my own disability is a major struggle. So thank you for sharing your wisdom. Best of luck to you.

  17. Michelle Smith*

    Thank you for the update and I’m hoping for the best for you with the medication trial! Any degree of additional comfort sounds like a great thing!

  18. Adultiest Adult*

    Thank you for modeling what acceptance with grace can look like, OP. No one likes it when the answer is, “I can’t,” especially not go-getter type people who have been trained from birth to do more. But reading your update reminds me of an old quote: “It’s not what they take from you that matters. It’s what you choose to do with what you have left.” As someone with chronic conditions myself, I needed this reminder, and I appreciate it more than you know! Wishing you all the best for the future, OP (Tara)!

  19. Michelle*

    I really empathize with the change in perspective from “Why can’t I do more??” to “Wow! How did I do so well?” I spent two decades before my diagnosis wavering between a certainty that *something* must be wrong with me even if doctors couldn’t figure it out, and a conviction that I must just not be trying hard enough, and surely I *could* manage if I could just organize my life better.

    Turns out you can’t organize your way out of a debilitating physical illness no matter how hard you try. But once I learned the details about what I was actually dealing with, it was shocking how well I did!

  20. Clare*

    Best wishes to OP, the commenters who have health issues, and anyone with health issues who reads this update in future! I can’t help you the way I’d like, but I vote, sign petitions and mention health care in conversations with those more powerful than me. Anyone who wants to help but hasn’t many resources, you can do the same. The best beaches are made from the smallest grains of sand. My thoughts and efforts are with you all.

  21. Miss Mantis*

    Hi OP, another fellow disabled person here who’s identity/self worth were based on academic and then career achievements, and then my chronic condition got bad enough that I also couldn’t work anymore. I spent so many years feeling like I just had to work harder…
    It’s been a loooong and difficult mental health slog to find feelings of self-worth, and it’s a journey I’ll be on for life. I’m an artist, and I’m lucky that I’m still able to make art (around the unpredictable schedule of my body’s whims). My art work for the last four years has been exploring this perspective shift, and it’s been a helpful way for me to talk about it with people. Wishing you patience and kindness with yourself on the hard days, no guilt on the good days, and joy in all the days.

  22. NothingIsLittle*

    I’m still early in my chronic illness journey and I’ve been struggling a lot with allowing myself to be sick, knowing my limits, and not over- or underdoing things. It’s really heartening to hear that you’re at a place in your health journey where you know and are at peace with your limits. Sending you all the best!

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