If I Am Not My Illness, Who Am I?

Signs showing Ill and HealthyI’ve written about akrasia in the past, that odd behaviour in which we appear to act against our own declared self-interest, for no apparent reason. You know, refusing to go to bed when we are tired, getting into the brownies when we say we want to lose weight … we’ve all been there. But what if it’s something else?

I am going to posit a bold statement.

We are so invested in our illnesses and bad body image, we will do anything to maintain them.

There, does the behaviour suddenly make more sense? Except the statement is crazy, why would we do that? Surely anyone who is ill wants to be healthy, and people would prefer to have a good body image?

But you know, if you are fat and sick, you have excellent excuses for not achieving, for not making the most of your appearance, for not trying your best and putting your heart out there into your life.


I have had an auto-immune disease for over half my life. It seems to be a seamless part of my identity – I can barely remember a time that I didn’t have it. When it is active, it is seriously not fun – pain, blood loss, embarrassing loss of control over some body functions, debilitating fatigue. For years I took medications that did absolutely nothing to help.

A few years ago, a friend pointed me in the direction of the Specific Carbohydrate Diet, a nineties version of Paleo of which I had been vaguely aware but had never tried. I stopped eating bread (I had already stopped drinking milk in the eighties on the recommendation of my gastroenterologist in the Netherlands – this as opposed to the one I have here, who told me diet had no effect whatsoever on intestinal disease). I learned to avoid scratchy foods such as popcorn, and to limit my legume consumption. My symptoms receded. I stopped taking all medications, and still my symptoms were pretty much gone. I had put myself more or less into remission by using food. Isn’t it wonderful?

And yet … this weekend I got into the popcorn. I got into the brownies. I stayed up late when I’m still tired from the flu I had in January. What gives?

On the assumption that I am a reasonably rational being (a dangerous assumption in itself, of course), and not suffering from terribly self-destructive tendencies, there’s got to be some reason for this behaviour. Why would I want to make myself sick again? Life is so much better without those symptoms.

This is where the Lizard Brain rears its ugly head again. If, to quote Brené Brown, I am to dare greatly, I must face the fear of my own inadequacy. It is so much easier to blame that inadequacy on external factors such as illness than on fear or lack of preparation or any other such reason that reflects unfavourably back on me.

But there might be a deeper issue going on here, too. If a chronic illness has been part of the fabric of our being for many years, if it is part of our story of who we are, then its disappearance can cause quite the identity crisis. While no rational being (that word again!) would seek pain and discomfort, at least when we have those, we know what is going on, and we know who we are. It’s part of a familiar, if unpleasant, narrative. The new narrative that I am going to weave in its absence is frightening, because it is unfamiliar. That insidious voice in our head that tries to keep us from any kind of change, good or bad, is going to encourage us to do those things that will bring back the familiar, even if it is bad. Scratchy popcorn tastes good, to boot. What’s not to love, except the damage I am literally doing to myself for no rational reason?

I think I have a better understanding now of why people stay in bad relationships and lousy jobs.

What do you think, does this speak to you at all? What do you find yourself doing to bring back familiar, if unpleasant, scenarios, and how do you break those patterns? Let me know in the comments below!

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10 Responses to “If I Am Not My Illness, Who Am I?”

  1. Asdis Says:

    Uhm, yeah. It really is hard work fighting the lizard brain on these things. My fibromyalgia symptoms can be kept at a minimum if I a) keep my sleeping pattern regular, b) take astaxanthine supplements every day, c) don’t eat too much junk and d) work out regularly in the correct way (not high-impact training – that just kills me). And of course I am crap at each and every one of those things. I don’t miss the supplements too often, but the rest is just terrible for me. Example: I go barhopping with friends where I dance like a maniac for hours and then stop for pizza and a soda on my way home at 5:30 am. Three rules of four that I break in one go. I do try to keep my grocery shopping on the healthy side but things just get grabbed before I go to the register. And then I’m in bed, past midnight, reading my friend’s blog, when I really should be sleeping. It just happens. I want to control it but sometimes I just don’t want to be controlled. Even by myself!

    Good article 🙂

  2. Hadass Eviatar Says:

    Glad to know I’m not the only one … maybe we need to set up an accountability group, so we can send each other to bed. As in, go to sleep, girl! <3

  3. Asdis Says:

    LOL But I *am* in bed! Just not sleeping. Ok ok.. Yes, an accountability group seems like something we could use to wean ourselves off bad habits. Count me in on it! Nighty night <3

  4. Kaila Says:

    YES. This DEFINITELY hits home.

    It’s like an inside out or outside in body dysmorphia.

    I think this may also be why it’s so hard to recover from an addiction–any addiction–because without our illness, we’re forced to do the difficult work of constructing a whole new identity. And often, we don’t have the language to even verbalize an identity without illness.

    You’re not alone in this (she said, as she ate 3 lbs of grapes in one sitting), and it’s definitely a part of the process…
    Kaila recently posted…Trigger Happy Thursday: Lose ControlMy Profile

  5. Hadass Eviatar Says:

    I think I’m going to have to borrow your quote on the hard work of creating a new identity and use it to make a card. May I?

  6. Barbara Says:

    Oh….you are SO not alone my dear friend!!!

  7. Hadass Eviatar Says:

    Thanks, sweetie! I’m glad it speaks to you. Hugs to all of us who are on this journey!

  8. Barbara Says:

    It didn’t just speak to me, it kind of yelled in my face!

  9. Hadass Eviatar Says:

    Sorry about that!

  10. Barbara Says:

    😀 No worries!

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