Losing My Edge


(Lyrics here.)

One day about three years into my illness, when I was still well enough to be working but sick enough to be doing so from home, I met my departing boss – let’s call him Brad – for a farewell lunch.

Chimp snapped this the day I went for my first interview at the marketing order. The Nanette Lepore jacket was a splurge and my first of a number of her designs. Ah, fashion. I miss you.

Not long after we moved to California in 2003, Brad snapped me up for a marketing analysis position at the California stone fruit marketing order, which he’d been hired to reshape. Serendipitiously, my resume – and a letter about me from the pen of the professor who’d been my food marketing advisor at Western Michigan, from where I’d just graduated – crossed his desk just as they’d been about to advertise the job.

Because of my unusual degree, I’d come into the job with some capabilities that the organization hadn’t previously had, and together with Brad and the rest of our marketing team, we’d brought the order a long way in a short time. Now, in the spring of 2007, he was leaving to go work for a fruit shipper.

I wasn’t feeling so hot that day. We’d made plans for the lunch a week or two earlier, and when the day arrived, I was feeling weak and woozy, and found myself dizzy walking into the restaurant in an all-too-familiar way. I knew I was overdoing it, but I felt obligated to go through with our plans, and I was then in the constant habit of overdoing it, honestly.

We sat across the table from each other, talking about our families, what we’d accomplished together, his plans for the company he was joining. And eventually I asked him, “Do you think I have a future in the ag business?”

Brad was kind enough to say, “You’re undoubtedly smart enough to do any job you’d be interested in.” He paused, and added, “As long as you get your illness under control, I think you’ll go far.”

When lunch was over and I left the restaurant, I was still fuming. Get my illness under control? As if it was some assigned project that I needed to stop procrastinating on. As if there was some obvious cure I had declined to take that would heal me. As if I hadn’t been pruning away all other aspects of my life, putting all my dwindling energy into holding onto that job. I knew Brad surely hadn’t meant to offend me, but I couldn’t help but be offended. I was giving my all to that job, and I felt like I was being told that the sacrifices I was making still weren’t enough. On the other hand, deep down, I knew being sick was holding me back.

Six years of college for this moment. (For some reason drama degree credits don’t go very far when you switch to a marketing program.)

I thought back to 2003. I’d graduated from Western Michigan ten years after graduating from high school, having worked for five years of that time after leaving college at the end of my sophomore year. Around the time I graduated, Chimp’s department head said to him, referencing my ambition and my being in business instead of academia, “Are you prepared for her to make more money than you?” Chimp was fine with it, and I was certainly fine with it – he and I had gotten together in 1997, and up to 2003, one or the other of us had always been in school and the other working full-time. But no matter; I’d gotten a lot of knowledge out of my circuitous path, and had thought – why wouldn’t I? – that there was no hurry, as I still had a long working life in front of me.

Nope. One healthy year after I graduated, and then struck down.

Not long after starting my new job, Brad had wanted me to enroll in a year-long produce industry development course, but between my hiring date and when it began, I had already fallen ill. We decided I’d hold off and do it the next year, when I thought I’d be feeling better. But then the next year came, and the next, and I was still in no shape to undertake such a commitment.

By the time I had that lunch with Brad, not only had the disease done a number on my physical functioning, it was doing a real number on my self-confidence, too. It was bizarre to start to lose my confidence, as I had never thought about how dependent it was on my physical health. Dependent on my smarts, my abilities, my drive, sure. My physical health? That I just took for granted that it would continue to be there. But my health and my confidence were tied up together. As I could count on my body for less and less, the constant uncertainty of day-to-day life with ME/CFS made me increasingly protective of myself, and that protectiveness caused me to be more timid and less willing to take risks.

Timorousness had never previously been a problem for me, but now it felt like my initiative and boldness were evaporating. A colleague who’d met me during the first bad wave of ME/CFS I suffered later said, “When I met you, I just thought you were just really shy.” Shy was not something that I had ever remotely been described as. But being sick made me seem so.

And the longer I was sick, the more knock-on effects of this emerged at work. Where I’d previously been take-charge, I started letting others volunteer for projects I would have enjoyed to have as my own. Known for creativity and blue-sky thinking, I now kept quiet in meetings when I would have otherwise have spoken up if my suggestions might add to my workload and thus my energy deficit. I noticed that the everyday stress of the job – things like time pressure and minor conflicts – was growing harder and harder for my body to manage, and was leaving me increasingly wiped out. Worst of all, my cognitive function was deteriorating – tasks that’d once been automatic were now requiring unusual effort, and while others didn’t seem to notice, I nonetheless had wanted to hold on to every one of my IQ points.

I had also started to feel opportunities falling away from me. Brad’s departure meant his job came open, and my boss moved into it. I might have been a natural candidate for her job, had I been doing things like participating in the industry development course, and had I still been working at the office rather than at home. I probably technically had the abilities needed to grow into the job, but it was clear to everyone that I didn’t have the energy level, and I wasn’t asked to apply. Frankly, I was fine with that. Because of the physical difficulties and the personality changes, mostly I just wanted to be left alone to do my analysis and editing – because that I could still manage, and my Excel and Word files didn’t ask me to talk or to travel or even to sit up, which was becoming increasingly difficult.

Looming over me was the possibility that all the life pruning in the world might end up being insufficient, and I might eventually not be able to physically manage my job. After pushing myself to go to too many meetings in the fall of 2007, which caused a crash, and shortly after that the start of my famous insomnia, I had an autumn of sliding downhill, ended up bedridden by Christmas, and that put an end to my working life. I struggled through the production of one last HTML newsletter – what would usually have taken me an afternoon took me five days, struggling through it an hour at a time each day before collapsing – and turned my files over.

It wasn’t a difficult decision at that point; frankly it wasn’t a decision at all. The disease made it for me, and to finally let go of the job was somewhat of a relief. I had been trying so hard to hold on to it for so long, and my insistence on doing so had made me worse and worse. Maybe if I gave it up, I thought, that would be the thing that would help me turn the corner.

But on the other hand, I was 32 years old and I’d been working in the food business for a dozen years. I had started out in retail at Whole Foods because of my idealism, and had gotten from there to where I was by being a bit of a workaholic and a perfectionist. I loved the job I had in California – it was precisely what I’d been hoping to find when I went back to school. I worked as hard at what I did because I truly believed in what I was doing. My focus on doing good through the world of food was my animating purpose in life – I loved it so much that I felt lucky indeed that I could get paid for it – and an enormous part of my identity.

Now it was suddenly all gone. Now the major force in my life was not what I was doing, but what was being done to me by my illness – and I had to figure out who I was all over again.

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32 Responses to Losing My Edge

  1. Alison says:

    It’s way past my bedtime as I’m writing this, I’ve already taken my bedtime medicine and klonopin, but I just want to say that even though of course it seems that way to you, or may have seemed, to me, it doesn’t seem like you lost your identity when you had to stop working. You worked in your industry for, what was it, ten or twelve years? You got your degree, or degrees? If I was meeting you for the first time, (assuming we both had the energy for a conversation, haha) I would have all these questions about your job because it sounds interesting, and I bet you’d have a lot to say, and I bet you’ve even kept up with the industry a little while you’ve been sick? So you are definitely not lacking in Identity Capital. (A term I learned from a book I read this month)

    I love that coat! You look so great. I had an internship one summer where I had to wear work clothes, but no one ever took a picture of me in them. Funny to realize. Lots of things are on my mind these days but one big thing since I’ve been trying to make new friends is the fact, not just that I don’t work, but I’ve never really worked. Before I got really sick I had a few different jobs but they were always entry level and never for more than eight months, usually just a few months. So I can’t speak with any kind of authority about any kind of job or industry.

    I read the lyrics before I read the entry, I’m just now remembering them. I’ve heard that song before but never really noticed it had such a specific theme and detailed lyrics. I guess would be losing your edge. At least you have an edge to lose?

    Good post. Your posts always make me want to write five paragraphs in reply, but I’m going to bed now…really I am…

    • Jocelyn says:

      Alison, I try to keep up with the food biz a little bit here and there. What makes it tough is that interestingly, food is very much like fashion. There are ingredient and preparation trends that are constantly changing, and that sort of thing is pretty difficult to get a handle on if you’re not able to physically be present in the outside world. It’s the sort of thing you might notice if you were walking around a trade show, or spending a lot of time at Whole Foods, but is a bit unapparent if you’re not.

      But on the other hand, I’ve let go of it a little bit because keeping up with it has a way of making me feel both sad and jealous. I started a food blog pretty early on – 2003 – and when I see what some food bloggers who started around the same time have gotten out of that experience, it feels totally unfair that I fell sick and never got the chance to develop my food writing to the point that I would get wider recognition for it. I can’t really cook – that was my main creative outlet; I used to spend a couple hours a day most days cooking dinner – and it is frustrating not to be able to use my creativity in a way that really brought me joy.

      Through what methods are you working on making new friends, and how is it going? I have met several folks through OKCupid – got chatting with them there and then friended each other on facebook, and it has been really nice to have more local folks to interact with, even if I don’t get to hang out with them in person.

      And yes, I’m grateful that I had an edge to lose – grateful that I feel like I got to a life stage that, comparatively, didn’t leave me with a whole lot of loose ends when I had to abandon my career. Not getting to finish college would have been much more traumatic for me than this was.

      Thanks for your thoughts!

      • Alison says:

        I just want to say, I hope what I said didn’t just sound like, “Be thankful for what you have, there are those who have it worse than you!” because I hate that and would never say that. Even if it did seem like that, because to me, reading this, even though it was really a tragedy, mostly I was thinking of how lucky you were to have had a career at all. I didn’t imagine you’d feel any better if I told you that, but I had to say it anyway. I hope you know what I mean.

        OKCupid is great! I met my boyfriend on there, who saved me from so so much. From having to live in Ohio with my parents for one thing! But I’m trying to make friends the old fashioned way, through other friends. I have two targets right now. One is a friend of my best friend who moved back to Ohio. She invited me to a cook out last fall and I did go but it was so hard and we said we’d get together but of course we never did. But lately we’ve been having TV nights. I can drive to her place in less than five minutes. It’s something I couldn’t have done last year, I owe it all to MAF 314 and Cortef ( I think). The other is the new girlfriend of a friend of my boyfriend’s friend. Ha. So she is in a group of friends that my boyfriend is on the edge of and I am on the very outer edge of. She’s been nice and inviting me to a lot of things but I have to say not to a lot of them. But there’s been a few things I’ve been able to do.

        But I don’t know if these budding friendships will go anywhere. I guess it gets harder to make new friends when you get older. I went home to Ohio last month and hung out with some friends from high school I hadn’t talked to in twelve years, and it was so great, just like old times. If I had it to do over again, and I knew I was going to get sick, I wouldn’t move too far from home.

        I’m glad you’ve made some online friends on OKC. I put on my profile once that I was looking to make more friends, especially girls, but didn’t get any bites. Maybe if I really changed my profile and tried to contact some girls in my area I have things in common with. I’m feeling hopeful about this now… : )

  2. Tanya Marlow says:

    I always enjoy your posts- you have such a brilliant way of telling your story.

    I can relate to that unsettling feeling that the illness is starting to affect your personality – or if not your personality, then people’s perception of it. I remember being assessed for a disability benefit and the doctor asking me to subtract 4 from 90 and keep going. My brain was working overdrive to do it, and I stumbled and got lost at several points, but he seemed to think that was normal. I wanted to say, “but this isn’t normal for ME!”

    In the UK at the moment there is a nasty campaign by the government to give the impression that anyone on sickness benefits is probably faking and wants to be ill (because the benefits are so good?? Really?) Recently our esteemed Prime Minister suggested that sick people could be ‘compelled to get themselves better’ by accepting medical treatment – and if they refused physio, for example, their benefits could be cut off. It strikes me this is very much the same mentality as ‘if you can get your illness under control’…

    • Jocelyn says:

      Thanks, Tanya, that’s kind of you. Yes, it’s so frustrating to feel like you’re being compared to a standard “normal” when everything is crashing down around your ears, function-wise. It just adds to the disbelief that surrounds this illness – not only does it not get the recognition it deserves in general, there’s so little understanding that the gradations of change we undergo are not even on the medical world’s radar.

      I have been following the benefits situation a little bit, because I’m connected to a lot of people with ME in the UK on Twitter. It is shameful and sad. Once again, such a massive amount of misunderstanding of a very complex illness. It’s not hard to grasp why responses to ME/CFS are what they are – no single biomarker, no real treatment – (then it must not really exist!) but that doesn’t make it okay.

  3. Tamara Epps says:

    I don’t really have anything to add but wanted to let you know that I am reading and understanding what you say. I have never worked really as when I finished my education my ME got worse and worse so now I’m housebound. I’ve been like this for over a year now and am still fighting to get any benefits as apparently I’m completely capable of doing everything I said I couldn’t.

    I don’t want to say ‘one day it’ll be better’ because I know that kind of platitude really doesn’t help but I hope that you (and everyone who has been through what we have) will one day discover a way in which to get our ‘edge’ back.

    • Jocelyn says:

      Thanks for coming by, Tamara. Sorry to hear you’re another one of the people struggling to get the support you deserve.

      It might never be ‘better,’ but that doesn’t mean we can’t make the best of it.

      I added your blog to the sidebar.

  4. Annie says:

    As someone else said in these comments, you have a tremendous talent in sharing the devastating effects this illness has on our lives. Your story is compelling and shows so well how this illness doesn’t just deprive us of a physically healthy body but how without that foundation of good health, so much else is lost.

    I’m not surprised you felt offended by yor boss’s comment, even if that wasn’t his intention. As you said, to say ‘if you can manage to get this illness under control’ implies we are in control when the exact opposite is the true situation. This illness happens to us, it’s bigger than us, mightier than us and impossible to control. Our attempts of trying to not let it get the upper hand are valiant yet go unnoticed and for me that hurt

    I always felt friends used to think when I was still half well and in the world and half ill that if they had it they would manage it better. Whereas I felt I deserved a medal they felt I could do more.

    Thanks for sharing your story and making others feel less alone in all that they face with this horrid illness.

    • Jocelyn says:

      Annie, that’s it precisely. I think most of us come into this illness with a sense of autonomy over our bodies, and that gets stripped away from living with it. And the irony is that we have to give up our sense of control entirely and let the disease drive our energy agenda if we want to survive the best. Thank you for the kind words.

      • Annie says:

        Thanks for those words. You are so right the irony with this illness it is only when we accept the illness is in the driving seat and we keep within its imposed energy limits that we can survive – and at times barely even survive xxx

  5. I got upset the other when a well meaning friend was suggesting different things that I could use to make my life easier, ‘like disabled people use’. It’s when the decisions and life are taken from out of your control that it’s most suckiest but take a little comfort that you were able to start in your dream job, to have an adult life. Just a little comfort. 🙂

  6. linda says:

    If you have a lower IQ now due to illness, I cannot imagine how you were before..your writing is incredible. What a comeplling story.

  7. Penny says:

    Your descriptions are wonderful, hitting home, and so so familiar — the struggle to keep functioning at work, the pruning out of everything else and still watching it become increasingly unmanageable, the unexpected changes in personality, and the plummeting IQ…knowing that a task is utterly simple and still being unable to do it. Thank you for putting into words what all of that can be like.

    When my health is better (or I just have a random good day), I often have this surprising moment when I realize that I actually ‘feel like myself’. Here’s hoping we all get to feel like ourselves again!

    • Jocelyn says:

      Thank you, Penny. Sadly it’s such a common story for those of us with this disease.

      I have those moments too. Not a whole lot of them physically, though more now than I did for some years. I think most of them come from my interaction with Chimp. Our relationship is largely the same, and I get a lot of joy out of it.

  8. Ash says:

    Jocelyn, as always, you have such a wonderful, compelling, way of telling it like it is – thank you so much for that! I think it not only helps those of us in the same boat to hear from someone else who’s been through a similar loss, but also helps our families & friends, when we share this with them, as it validates what we’ve been trying to get them to understand, sometimes for a long, long, time.

    And it is a loss. We have lost our previous, healthy, selves, and everything that went with it – careers, hobbies, many friends, favorite activities, and in some ways, our sense of identity.

    But you have found a new identity, and have such a strong voice & presence in our community. I doubt you know how many people really admire you for your spunk & determination, your wit & wisdom, Jocelyn.
    *gentle hugs*
    ~Ash

    PS: And if you lost any point off your I.Q., we certainly can’t tell!

    • Jocelyn says:

      Thanks ever so much for the kind words, Ash. Yes, I agree: Sometimes, for some families, it takes someone from outside the family to validate all the things that have already been said but not really believed.

      I have more to say about identity in my next entry, so I won’t go into that here, but I am glad that even if I can’t do all the things that I expected I’d do, that I can still do *something*. Appreciating that something more than mourning the losses is an ongoing process.

  9. kathy d. says:

    This is a really tough disease and comes with many moments of disappointment and denial of one’s drive and the need to be productive and creative in this life. It requires so many readjustments. I try to be a contributor in my life to some causes, but I often can’t go anywhere and try to be helpful online. This doesn’t always work out, i.e., in the terrible heat. One room has a/c (which doesn’t always work well) but the one with the computer does not, hence, limitations.
    I didn’t get groceries all week as I couldn’t go out in the 90-plus heat, and I went today and felt like I’d pass out constantly. Had to keep finding places to sit or have people load my cart, thought I’d have to sit on the floor in Whole Foods, but found a place to lean on for awhile.There are so many logistics involved here: where will I sit on the way? The library is on the way, sat there and on a bench outside a take-out food place. This is all in a diameter of 4-1/2 blocks, by the way. But Whole Foods is gigantic and a challenge — and there are no chairs.
    So during this hot weather I just piled up the mystery fiction, read my New York Times and watched a alot of awful TV. Somehow I get pleasure out of this and then get so embedded in my reading that I don’t want to do anything else.
    Thankfully, there is an Internet with blogs of readers and people with ME/CFS to communicate and share with. Without it, life would definitely be harder and more isolated.
    So, thanks for your wonderful words and spirit. It is contagious!

    • Jocelyn says:

      Sorry to hear what a tough time you’re having with the heat, Kathy. We have been keeping all the windows covered with sheets. It makes the house a bit gloomy, but it helps the A/C cope. It’s been doing pretty well – even on our one 97-degree day, it stayed cool enough in the house. It is a bit troublesome that the A/C has to run during the night, as the noise of it cycling on tends to wake me up if I don’t get my earplugs in just right, and sometimes even if I do.

      Have you ever used Fresh Direct or Whole Foods delivery services? If the store were relatively close, it seems like it might be worth the dollars to save your strength. And which store do you live near? Chimp and I visited the Chelsea one during our honeymoon, which was pretty new at the time, and I remember it was more difficult to navigate than the stores I’d worked in by dint of it being so busy. And having been a Whole Foodie, I am pretty sure that if you outed yourself to the store team leader, you could probably work together to find some accommodations that would be helpful to you. At stores I worked at, we regularly had team members shop with people in wheelchairs or who were blind.

  10. kathy d. says:

    I can talk to the Whole Food supervisor or whomever. I have asked for a chair now and then to no avail. But I’ll try again. I brought my shopping cart so I wouldn’t have to carry anything, so that was easier. I have to put some weights in the cart as I usually use a cane (broke femur years ago) but don’t want to deal with a cane and a cart. Impossible.
    I really should have the food delivered. I have done that. I should do it again.
    The Whole Food in Chelsea is not only busy but must be the size of Yankee Stadium. I get exhausted just walking through it. The frozen food and dairy products are very far from the entrance and that wears me out.
    I’m trying to economize and not have food delivered every day; I mean meals or parts of meals from a take-out/delivery store, so I’m trying more with Whole Foods. But there are better ways to do this, I’m sure. Also, a kind neighbor sometimes buys groceries for me there.
    The heat outside is unbearable. And the air pollution is worse. I can’t breathe outside often, even when I have cabin fever and need to go outside for awhile to break up the monotony. That is one of the pitfalls in living in a big city … car exhaust, cigarette smoke, etc.
    Anyway, thanks for your ideas.
    On the a/c why don’t you put it on timer (1 hour) when you go to bed and then when you get up before your second shift of sleep, then you can put the timer on again for an hour. I’ve been doing this and it’s working out well. (And I do not use the Energy Saver because the a/c going off and then kicking back on would wake me up — and drive me nuts when I’m awake.) But since I’ve used the timer before sleeping, it’s working out well. And I figure I’m saving some money, although when I get the utilities’ bill, I may take the first train out of Dodge!
    Other things: I’m getting ice cube molds so I can make popsicles out of everything, including iced tea, and I use ice packs on my head when necessary. Other people don’t get the extent of this heat sensitivity, but I have actually gotten fevers lately in the extreme heat.

    • Jocelyn says:

      Yes, I remember you mentioning some of your meal delivery approaches. Living in NYC, you have a lot more options available than anywhere else.

      Looking at the WFM website, it looks like the store team leader is Jon Gass. He or one of the assistant store team leaders will surely be able to help. The trick is talking to the right person. Though someone on the sales floor probably technically is empowered to help (all WFM team members are allowed and encouraged to go above and beyond), in a store as busy as that, I think you’ll get a better result by going right to the top. Do call and ask if you can meet with him.

      I think we previously talked about frozen food, but have you ever used the vacuum pouch meals that are sold in the international food section? I know there are several companies that do Indian and some Thai meals that way, and if you have a rice cooker, that’d be an easy, vegetable-rich, and relatively cheap meal. You could nuke a papadam, hang up your Christmas lights, and pretend you were on 6th St.! I know WFM carries them, but those pouches are usually cheaper at Indian groceries.

      One of the troubles with our A/C system is that our house is brick. So any day that it gets really hot, the house absorbs a huge amount of heat. This is really great in the winter, but obviously not so great in the summer, because even after the sun goes down, the house will continue to get warmer because of all of the stored energy. So sometimes we have to leave the A/C to come on because otherwise the house will keep heating up.

  11. Jocelyn, I have been reading your blog for quite awhile without leaving any comment. I find this entry stimulates me a bit differently from other entries, so I will comment and introduce myself. I had to quit teaching after I became ill in the mid-1980’s. There wasn’t a name for this illness then. I stopped working in 1987, and I still have nightmares in which I am teaching and I cannot remember any of the children’s names. When I became ill, no one understood and my co-teachers couldn’t figure out what was happening to me. I think none but the children in my class knew how much I had changed, but they were the ones I certainly did not want to be affected by my losing my edge. I had been a teacher for almost 15 years–longer than I had been a wife and much longer than I had been a mother. It was my identity–or at least being able to excel at this had been my identity.
    The major loss of my illness was loss of this identity. I cannot describe myself now in a sentence or even a paragraph, as I could have then. I did get better after 10 years of rest. I was able to volunteer and later to work about 20 hours a week as an outreach specialist for a public library, doing programs for families at risk. I thought I would go back to work fulltime, but my life took another turn when my daughter became ill her first semester in college. I watched her develop the same illness I had had. By that time, 1997, there was a name and doctors did have some idea there was such an illness. Despite treatment of various kinds under various doctors, including a famous CFS specialist, our daughter is still ill, and she is disabled, but lives alone with our help and government programs.
    I watch her struggle to identify who she is and how she can contribute to the world. She never had a chance to have a career or to pursue her degree in college. Her more recent friends are younger, as she is young socially. But even her younger friends are married and now having babies and careers. We recognize the value of being rather than doing, but…it’s hard to explain our lives to those who have no idea.
    I am now 63, and I can recognize in myself and my husband (75) the losses we experience as we age. It’s common for my friends to have conditions which limit them, as I do. But I know it’s very hard to be young in age and face the losses of careers, motherhood, friendships, and dreams. None of us knows what the future holds, but when we’re young and healthy, most of us can pretend anything and everything is possible and that hard work will get us where we want to be. I tell my daughter that everyone who lives long enough will suffer such losses, and she is beginning to see her young friends suffer losses she thinks she would not be able to endure. When anyone just does not understand and says things such as your boss said, I think, “He’s young. He hasn’t had to suffer enough to know some things cannot be “gotten under control.” He hasn’t lived long enough to learn that relatively few things are really under our control.
    I appreciate your wonderful writing style and your deft expression of your viewpoint.

    • Jocelyn says:

      Thank you for the wonderful (first) comment, Peggy, and your kind words. You put that all so well.

      Yes, it’s so hard sometimes to interact with people whose lives are “normal.” The gears of our lives and the gears of their lives just won’t mesh – making a connection requires some mutual comprehension, and this illness is one of those things that’s upside down and backwards in places, totally non-intuitive. “What if you get more sleep and exercise? That makes me feel better when I’m tired.” Just embarking again on trying to make it make sense to one more person can be more than we want to do – it feels unfair that we have to carry this banner, feels like it would be so much easier if we had a very famous champion, if we were taken seriously by the medical system.

      As to your daughter, I’m so, so sorry that she’s also developed the illness, and especially that it’s happened at such a young age. Again, I think we have a mostly unique perspective about what it is to have large parts of our lives cut short while life still goes on for us. It’s a difficult thing to psychologically reconcile, and for sure it doesn’t happen all at once.

      Thanks again for piping up, and I hope to hear from you again in the future. Give your daughter my best, please.

    • annie says:

      Peggy, I really appreciated your words of wisdom. I think you made a lot of astute observations which have given me much food for thought.

      A cousin wrote on Facebook today how they’ve managed to lose 55lbs of weight in the last year through hard work – massively upping her exercise. It’s an achievement and I am happy for her but the message she was giving was explicit – hard work means we can achieve our goals. Those of us with illness know that sadly this is not the case and some people as they age will learn this too ( i think of my grandparents though who lived to 88 and 90 both in excellent health until the end). This knowledge sets us apart and makes interacting with healthy life forms not always easy….

      • Jocelyn says:

        Agreed – hard work is not an option for some of us, and letting go of that as an approach to life is difficult. Explaining the need to let go of it is almost as difficult.

        Body policing is not fun to deal with. There definitely are people who can get enormous benefit out of changing their diet and exercise approach, and yes, sometimes those folks assume that everyone can get their results by doing the things they do.

        I wrote an entry a while back about dealing with the weight loss that the illness caused. It is one of the most interesting circumstances of this whole experience – it was so eye-opening (and also sad) to see how it changed the way people treated me.

  12. annie says:

    Typo above, meant to write ‘this is sadly not always the case’….

  13. annie says:

    Hi Jocelyn, I read your weight loss blogpost a while back but went and read it again. Since becoming severe, I’ve put a lot of weight on and so am dealing with the opposite to you where, like you, I feel judged for my weight, but in a negative way. I’ve become hyper aware of the message that if you are overweight then it’s because you have no control and eat too much (I probably thought this too to my shame). This may be the case for some people but not all. My weight gain happened when i was bedridden and the medication I was on to help with sleep gave me a massive increase in appetite. I ate healthy foods but I needed so much and weight gain inevitably followed. I’ve managed to stabilise my weight since the initial weight gain five years ago by changing meds despite being housebound/at times bedbound but am still much heavier than before.

    Unless i make huge improvements and can exercise i don’t see me losing this weight. I eat healthy but really struggle if I cut calories. I don’t like being bigger, it’s another loss with this illness… I, of course, more than understand though that you would trade your weight loss for a return to full health in a flash and it must have been hard to have to listen to the comments some people made….

    Having to let go of the approach to life that hard work will reap benefits is as you say hard. I think with me, probably because i need people’s validation a lot, having to deal with many people not understanding why I’ve had to let go of that approach is even harder. I really do need to develop a thicker skin than I have if I want to emotionally survive living with this illness….

    • Tamara says:

      Annie, I can totally relate to your experience as I am going through the same thing. While I’m not completely bedbound, I am unable to move much at all and so have put on a lot of weight over the past year as I used to be very active and now I’m not but still have the same diet (although I have tried to make it healthier). I never used to worry about what I looked like, but now always feel as though I am judged when I do manage to go out in my wheelchair, and my self-confidence has been knocked a lot. Like you say, it’s just another loss from having this illness and I would gladly trade health for weight gain, but I needed to let you know that you are not alone and I am so glad that someone feels the same as me (as often I read about people losing weight due to chronic illness as they are unable to eat).

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