A Rant About the Illness Narrative

Just for fun, the beginning of my pill bottle collection. I have four bags full at this point.

Over the past seven years, I have had various people tell me, here and there, that they find me “brave” or “inspirational.” And it seems like the sicker I’ve gotten, the more I’ve heard it.

I don’t want to sound ungrateful for the compliments, but the truth is – I really hate this. I don’t begrudge people that they see me that way, because I can understand why they do; it’s just that I don’t personally feel that what I’m doing is necessarily brave, and I certainly don’t consciously aim to be inspirational. I just have this disease, and I do what I can to survive. If you had it, you’d do the same.

Seven years of being ill has given me plenty of time to get familar with this, the dominant narrative imposed on people with severe and/or chronic illness in our culture. The person falls ill, and they battle bravely against their disease. After all, how many times have you heard it said that someone “defeated” cancer, or “lost her battle with” cancer? We have this schema of disease as a war, that it’s something you mount your body’s defenses against via your will, that you show valor by battling bravely, that your fighting against it and not “giving up” is inspirational.

And all that, frankly, is bullshit. I had to learn that the hard way. I really did think, when I fell ill, that my getting better would be a matter of willing myself to. After all, I’d gotten sick plenty of times before, and I’d willed myself to get better, and I got better. But that’s not how it works. Whether you will yourself to get better or not, your body has an immune system, and either it does its job or it doesn’t. You take drugs, and either they work against the disease or they don’t. You undergo chemo, and either it turns the tide or it fails to. Will has fuck all to do with it.

But when people see someone who is managing to live with a disease that they perceive as very disabling, as something that they can’t imagine having to live with themselves, I think they fit that into the “will” framework, not just as a matter of doing what you have to do to put one foot in front of the other, even when you literally can’t put one foot in front of the other.

And speaking of “other,” forcing someone else’s experience into a mold like this, instead of taking the time to understand them as as the unique human being they are, is totally an example of “othering.” It’s setting up a difference between the normal and abnormal, with the default here being the healthy person, and the other being the sick. It’s obviously intended to be a positive sort of othering, being associated with traits that are seen as virtues (the aforementioned bravery and inspirational-ness), but it’s still othering.

The schema of disease as a war, the framework of enduring suffering being brave/inspirational, the setting up of a division between the healthy and the sick – all of these are ways that people tell themselves the story of illness. Telling ourselves stories – individually and collectively – is part of how we understand the world. I get that. But it limits us, too, because while fitting all the details into a preconceived narrative helps us get our heads around something difficult to understand and makes us feel better for feeling like we understand it, it leaves out the reality that actually exists. The reality of chronic illness is far messier than this.

I think part of the reason people see me as brave is because I generally seem pretty happy, despite being quite debilitated. But I don’t think it’s that strange that I’m not continuously morose. Really, you’d be surprised what you can get used to.

Having proved to be one of the unlucky ones who has a progressive form of the disease, it has, over time, gotten worse and worse. But it’s like the frog in the pot of water problem. It’s not as if, the moment I became ill, I went right to bedridden.  Because it happened so gradually, it wasn’t until I fell bedridden that there was a time when I suddenly had to get used to a very changed life. At first I was able to keep commuting to my job, and that lasted for a couple years. Then I was able to hold onto that job working at home for another year and a half, and only after that did I became almost entirely bedridden.

Becoming bedridden was terrifying. Suddenly I was so sick that all I could manage was to shift from bed at night to sofa during the day. And then I lost that and was unable to even walk across the room. That was awful. But since I’ve regained (and lost and regained) the ability to do the bed-to-couch shift, I’ve generally been pretty happy.

I am still human. I do feel sad and get frustrated about the things I’m not able to do. There is grief, and anger, and fear, and loss in my life, but happiness and joy, too.  Do I fantasize about being well enough to get in the car and go on a road trip? Of course. But I can do more than I used to be able to – when I was totally bedridden, I dreamed of regaining a little ground and being as well as I am right now. So it’s easy for me to feel grateful for the little things I can do, like walk out on the deck, or sit at the kitchen table with Chimp for a few minutes.

Being happy with my lot is a matter of perspective: As Chimp is prone to say, let the good days be good and the bad days be bad. If you do that successfully, you end up mostly living in the moment. And I’ve come to the conclusion that I might as well, because dwelling on the fact that I’m likely going to be continuously sick as long as I live is overwhelming. So I don’t try to to deal with the rest of my life all at once. I couldn’t if I wanted to, anyhow.

Furthermore, I don’t think a whole lot about what the meaning of life is (sorry, philosopher husband – good thing that’s not your specialty!), or what my life goals are. I don’t really have any. I don’t feel like I have the luxury of that, because the likelihood that I’ll get to accomplish any of them if I did have them would be pretty low. I honestly just try to find things I can enjoy with the little bit of life I have in me. Mostly that’s a whole lot of reading, pictures of cats and internet culture, facebook, and just hanging out with Chimp.

Would I rather be well and working? Of course I would. Who would choose a life like this? But not having the choice, I choose what I still can, and I really do try to make the best of it. I’m still a human being in here, and I want similar things as other human beings – love, friendship, security, and to be appreciated for the individual I am – not just because of how I deal with my disease.

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43 Responses to A Rant About the Illness Narrative

  1. Nathalie says:

    Wow Jocelyn that was very well said and sooooo true!!! It is what it is and we just have to make the best of it.

  2. What angers me about the illness is that is limits your ability to give who you are to the world but here you are giving to the world through your blog. You are Jocelyn, the smiling, leg kicking 8-month old on a rug in a house in Maine.

  3. Carola says:

    Thank you for this eloquent post, which I happened upon at the end of one of my bad days. Just this week a friend told me she thought I was being so brave, in the context of my giving her a matter-of-fact rundown of the various wheelchair or scooter choices I’m considering. I didn’t know how to respond, and the moment passed. I’m guessing she may have thought I was feeling sad that I need a wheelchair in order to experience the world outside my house, whereas I really feel grateful that this is an option for me. Beyond this post, thank you for your blog. You’re a terrific writer and so generous with your insights and experiences.

    • Jocelyn says:

      Thanks for the kind words, Carola. Yes, that’s just it – your perspective of opportunity is her perception of limitation. It depends a great deal on which direction you’re coming at it from, doesn’t it?

  4. Jenn says:

    I think you’re dealing with your disease as best as you can, and you’re doing a damn good job coming across that way publicly. I know I’m frightened about your future, and I’m sure all of tour friends are. The best way I know how to cope with that is to watch you fight so openly and be proud of you for it. I think we’d all fight just as gallantly as you are. When we don’t know what else to say, it’s easy to tell you how brave you are. I love you and cherish you as a friend.

    • Jocelyn says:

      And I treasure you as a friend, Jenn. I do try not to think too much about the future, as I said – it’s not here now. I know I’m probably going to die quite young, but I’ve had years to get used to that idea now. I wish I could make better use of the limited time I have, but you know what? I’m not alone in that. We all have limited time. We’re all in that boat together. And I understand that people don’t know what to say – it is a hard thing to comprehend.

  5. Jill says:

    Great post!! I agree with you – it’s not about fighting the illness, but accepting it. I’m not as immobile as you yet, but I am progressively getting worse and am basically house bound. I give myself permission to do nothing, watch Netflix all day and appreciate the good days when I have them. Sometimes I feel sorry for well people because I want to give them my boundless ability to enjoy the smallest pleasures. Thanks for writing – I’ve just found your blog and will be a regular reader
    Jill

    • Jocelyn says:

      Thanks, Jill, and thanks for stopping by! The progressive form is the worst – I’m sorry to hear you’re dealing with it too. And you’re so right; it’s great to be easily amused! It makes it easier to be happy amidst one’s suffering.

  6. susan says:

    I enjoyed that clear written narrative . I find i am inspired , proud,impressed and a myriad of
    other responses to my knowing you not because of your illness. I think you are wonderful and incredible and i admire you because you have amazing qualities. You are a treasure.
    Susie

    • Jocelyn says:

      I appreciate you saying so, Susie. Sometimes it feels like my whole identity has become being ill. It is so good to have people in my life who remember the good times we had together before I got sick. I love you.

  7. cinderkeys says:

    Great post.

    I’d never heard the term “othering” before, and now I’m going to adopt it. Very useful.

    Othering is a defense mechanism. People use it for all kinds of misfortunes. “You are amazing. I could never deal with [being so sick / taking care of somebody who’s so sick / losing a child / etc.].” When you put it like that, it’s like the other person had some sort of choice in the matter. Or that the universe handed THIS particular catastrophe to THIS particular human being because THIS particular human being could shoulder the burden better than anyone else.

    In other words, “As long as I remain ordinary and human and flawed, that bad thing will never happen to me.”

    • Jocelyn says:

      You’ve hit on it exactly, there, Susan. It helps people distance themselves from the terrifying spectre of severe illness. Who wants to confront their own frailty? It’s a frightening thing to have to accept, that Something Really Bad will probably happen to them eventually too.

  8. cinderkeys says:

    BTW, here’s another good post on the same subject. Worth reading if you haven’t run into it already:

    http://www.heaveninmyfoot.com/2007/11/follow-your-dreams-to-hell_15.html

    • Jocelyn says:

      I hadn’t seen that one! I’ve read Priscilla’s blog here and there, but I haven’t gone that far back into the archives. Thanks for bringing it to my attention.

  9. This is a fine post indeed. I too cannot bear saccharine, florid accounts of bravery and ‘having the will to fight, beat the illness’. The drugs work or they don’t. Humans can adapt to the most dreadful circumstances, it is what we do. The way we cope with chronic illness – and ME brings all its own problems with the lack of belief we have faced – is determined by who we were before we got ill and the support we get – and I do think without strong family/friends this illness could perhaps undo you. The battling narrative is familiar and I agree people tell you you are brave because they cannot imagine themselves coping, but in the same situation they would find that they do cope – or they don’t. It is not really about being brave, it is simply about dealing with what is there.

  10. Leonie says:

    Funny, I had a conversation about this with someone today. Its taken me a long while of “fighting against” being ill & my physical state to realise it is totally the wrong approach, wasting my precious energy & getting me nowhere. I am working on accepting what is happening & doing the best I can with what I can do. I haven’t given up, I trying to be smart & adapt, to love & work with my body, to find ways to help it do more. I am learning about grace. I bought my first walking frame today as a cane is no longer enough, I am learning to embrace my Inner Nana & it will help me to remember to still try to live disgracefully like all eccentric Nanas should 🙂

  11. Karen says:

    Your mom’s comment brought tears to my eyes. And your post is wonderfully written. I think everyone could benefit from letting good days be good and bad days be bad and trying to live moment by moment, day by day rather than always looking ahead.

    Although I am looking forward to hopefully seeing you in another 6 weeks or so. 🙂

  12. Mark Lance says:

    Hey. Thanks for that, as for so much insightful that you write.

    I’ve often thought that the “courage” narrative is stupid. I mean seriously, it’s like saying I was courageous when I stepped back to avoid getting hit by the bus yesterday. Doing what one can to stay alive just has nothing to do with courage per se.

    But for all that, there are virtues and vices in the practice of dealing with illness or other such challenges, just as there are in any domain of life. One can recognize the valuable things one has, the non-uniqueness of one’s suffering; one can maintain good humor as much as possible; one can continue to care about others; one can be rational and do those things that will help rather than giving in to depression, laziness, or superstition; one can have the will to do the valuable things that one can do.

    All of these seem to me to make perfectly good sense. So perhaps you’ll let me say that, yes, I think you are a hell of a lot more virtuous than a lot of people I know who are struggling with a lot less. Courage is the wrong virtue, but virtue there is.

    Is that “other-ing”? I don’t think so, or I hope it can be put in a way that isn’t. I think I know that we all deal with all sorts of challenges. Some are pretty enormous and life-dominating. I know people who have watched their family be murdered when they were children, people who have died young, people with diseases, people who have dealt with all manner of abuse, people who live as refugees, etc. There is sure no point trying to rank the various shittinesses that life can toss at us, or to say that there is some thresh-hold of shittiness that suddenly makes you different. But for all that I do want to admire, encourage, teach about, and present as a model the people who do the best job of being a human in each of these shitty situations. Just as you deal with things that I have no real conception of, you are capable of particular virtues in that dealing that I have no possibility of. That doesn’t make you “other,” just different. (You can’t aspire to the virtues of a teacher in the ways I can.)

    Well, so there you go. I miss you guys, and am routinely inspired by you – and Michael also.

    • Jocelyn says:

      I appreciate all of that, Mark. I am absolutely certain that you’ve done more reading on othering than I have, and I also know that you’re very aware of the many forms of privilege and oppression that exist. I don’t think you in particular are trying to other me here, but I really do think there’s often some othering in play in the healthy relating to the chronically. I mean it not in a philosophical sense but in a sociological sense.

      Michael and I were talking about this last night. He likened the bravery/inspiration othering to the treatment Native Americans get in our culture. The “noble savage” crap is surely othering, but it, like my particular example, is a positive sort. And though it’s positive, it’s something that puts distance between human beings because the person perceiving the bravery/inspiration is relying on a schema/stereotype and is not really attempting to get to know the human being they’re dealing with.

      There are a whole other set of ways people with ME/CFS are actively denigrated by the well. I’m not going to get into that here, but the comments that Alison has selected for the second half of this blog post will give you a good sense of it. There are certain blogs and journalists I assiduously avoid for this reason.

  13. Virginia Downs says:

    Thank you for that! I appreciate hearing that I don’t always have to be brave. I’m teetering (literally, ugh) on the edge of needing a cane to walk safely, and more importantly just feeling like hell some days, and it really embarrasses me to call in to work and say I’m not going to make it. I guess I’ve absorbed the idea that I’m supposed to be brave.

    On the other hand, I know the people who love me are genuinely worried about me, which makes me want to hide it as long as possible if I feel like hell. That’s not bravery, but like other kinds of dishonesty, it may make things worse some day if they’re not prepared if/when it gets really bad.

  14. kathy d. says:

    Amazing post, and written with so much inner strength and realism.
    I have a relative, whom I consider very brave who has dealt with cancer twice. She hates the term “fighting cancer.” She says you just deal with it, and do what you have to do. (I consider her to have been very courageous in how she dealt with both illnesses, and with sensitivity to her family, especially her child.)
    I have to reread this post and think about it more. This disease and I are going to hit the 26th anniversary in two months. So I have to assess what’s happened.
    I cannot do some things I could do a few years ago, or could do 10 years ago. Yet I can do some things better that I’ve made myself learn, but other things I can’t. (I tried to learn Spanish from a very patient friend, but gave up as I can’t remember anything.)
    I’ve gotten much more into reading global mysteries, and found some terrific blogs and bloggers, where one can read comments and write them. Such interesting folks.
    My reading is a hobby, but it’s also a focus. It sometimes is hard when I have to pay fines because I can’t get books and videos to the library within the deadline, but I accept that.
    Everything takes me longer to get done, and I can only do one thing at a time. I know this now and accept it — friends and relatives don’t always get it or understand this.
    I have a lot of acceptance about my life, but can’t get things done that are basic, like dental work, getting a wisdom tooth pulled, getting to my allergiest (supposed to every week; if I get there once a month, I’m doing well). I get food and prescriptions delivered, as I can’t always do the errands. Yesterday, just doing some errands within six blocks, with problems with copiers and fax machines where I had to yell for “help” in the middle of Fed/Ex/Kinko’s was embarrassing. And going to Whole Foods to shop, which I rarely do was hard. It’s 3 football fields large, as least, and then lines. Today I was a wreck.
    I still have to deal with the frustration of not being able to get places further than a short cab ride away, not having folks to drive me. So I restrict my travels.
    And friends still need educating. I find a former health professional friend is the least understanding. When I say I need to talk to her 3 feet away, and not walk 30 feet, she asks “Why”? Grrr. I’m giving her a lot of material.
    You sound like you have a good way of dealing with life, dealing with the everyday things, putting one foot in front of the other as you can — which is the only way to deal. (Plans are impossible.)
    And enjoying your computer, books, cats, spouse, friends, relatives as much as you can. And making the most of your days, even when difficult. Having a supportive spouse, family and friends at least relieves the isolation, which is very difficult.
    My best wishes to you in living with this disease. It sounds like you are doing the absolute best that you can and you inspire us with your inner strength, coping skills and perspective.

  15. Janet says:

    Dear Jocelyn
    People thought/think I ‘m crazy when I say how lucky I am, but I am glad every day to be alive and loved, even on the crappy, very bad days.None of us beats the odds forever. Thanks for expressing ideas so eloquently. That is VERY Jocelyn of you, and predates your illness.
    Love you so much… (and I remember that baby on the rug- she looked at me so intently the first time she saw my hair down vs. pulled back!)
    Aunt Janet
    cancer symptom-free

    • Jocelyn says:

      Thanks so much, Janet. I’m so glad we’re both still here. And I think that baby on the rug was probably thinking, “Wait a minute…this one looks like some of the other ones I’ve already met. There must be some connection between them, but what is it? Well, might as well kick my legs while I try to figure it out. Kick kick kick!”

  16. Nathalie says:

    Dear Jocelyn; I think we become brave as a way of adapting to our situation. Some people adapt more than others and some people give up when others keep on fighting. You keep on fighting and that’s why others admire you so much. I have adapted to my situation as much as I can but the struggle I keep having is having friends not understand what it’s like. Everyone has their own problems and am always sympathetic regardless of how small the problem is but yesterday a friend of mine compared my situation of beeing being bed ridden, home bound, wheelchair bound, stuck on the second floor of my house no different to what she is going through with being single in her 40s and battling acne! How are we suppose to deal with that! Another friend had a bump removed from her nose and didn’t think she would get through it and I had to keep encouraging her that it would only get better. We don’t have a prognosis of how much worse we are going to get. I too Jocelyn have stopped making plans and just take it a day at a time. I keep my sense of humor and try to not dwell on my friends’ opinions. Right now I’m tired of explaining to everyone why I can’t attend the upcoming Hallowee’n party. Should be pretty obvious! I keep telling them it would be no different than the movie “A Weekend at Bernie’s” and I would be Bernie! LOL Just my two cents!

    • Jocelyn says:

      Oh, Nathalie, that stinks. That’s another way in which I feel really fortunate – I have no friends who seem to have a lack of perspective about my illness. Although I know how your spotty friend feels, because I woke up one morning in 2001 with acne out of nowhere (literally went to bed with clear skin and woke up all broken out, and it persisted for years), and it seemed like The. Worst. Thing. at the time. Not that acne is worse than bad enough ME to trap you on a single floor, but maybe acne is the worst thing that’s ever happened to her, and that’s where her equivalency is coming from? Anyway, how about we meet at the stairs – you at the top, me at the bottom – and we’ll have a Halloween party. I’ll bring the chocolate, since I’m nearest the kitchen.

      • Nathalie says:

        Jocelyn you’re the best!!! I can certainly see your perspective on the acne. I just never thought it was comparible to being invalid until her comment and her face was completely clear at the time. We are soooo on for Halloween!!! we can chuck some tootsie rolls at eachother!! LOL I’ll be dressed as a pirate just so you know its me!! LOL

  17. girlinczechland says:

    Great post. I’ve been waiting for someone to write something which articulates the way I feel about the dominant illness myth in our culture and you do it beautifully here (which saved me the trouble!).
    I don’t know if you’ve heard of “Smile or Die:How Positive Thinking Fooled America and the World” by Barbara Ehrenreich but there’s a chapter on the author’s experience of “fighting” cancer (where she calls into the question the validity of this term) which I think you’d find interesting. Not sure how much reading you can manage but it’s worth the effort.
    Girl Frequently in Bed, living in Czechland

    • Jocelyn says:

      Thanks, GFiB,liC! 😀 Yes, in fact, I’ve read Ehrenreich’s chapter on cancer, and while I had started thinking along these lines before I ran across it, it definitely had an influence on this post.

  18. kathy d. says:

    It’s good you read Ehrenreich’s book. A relative of mine who has had cancer twice disagrees with the “fighting cancer” hype, and the positive thinking myth as well. She loved Ehrenreich’s objections to this.
    Have you been reading all of the developments around the Rituximab being studied in Norway with CFIDS sufferers?

  19. jsk says:

    AMEN. You put words to what so many of us think and feel inside. I think the whole “you are so brave” thing has to do with the positive spin everyone wants to put on bad things. It seems like they think it’ll encourage us. Thank you for telling it just like it is.

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  24. Dear Jocelyn. I have read everyone of your poosts and must tell you you have by far the best CSF/ME blog out there and i like to think one of the most informative, insightful, thoughtful blogs in this big wide world! You should really be so proud of yourself and the work you’ve done here. This particular post is one of my favorites. I’ve had CFS for a little over four years and the last year being the most dibilitating. The idea of othering is so true for us severely affected. Thanks so much for the good read. Much love to you, ginna

    • Jocelyn says:

      Aw, Gina, that’s too kind of you. Sorry to hear you, too, are ill, and especially sorry to hear you’ve had more challenges of late. I hope things will start to turn around very soon. Thanks for coming by to read and say hello.

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