4:17am May 3, 2013

My personal experiences with orthorexia

So basically. I’d always been prone to this. I don’t know what exactly to call the tendency. But the tendency was there, it only had to be activated by outside sources in order to start restricting more and more foods from my life. And these outside sources usually manipulated me in some way, and I was vulnerable, and the combination of internal tendency and outside source resulted in more and more food restrictions.

So there was the vegetarianism. And no I am not saying vegetarianism in itself is an eating disorder. But for me — and for the reasons that I adopted it — it was absolutely the first sign of one. And then veganism eventually followed, again not because I freely chose it but because of my particular responses to certain kinds of manipulation.

Then I began to cut out a bunch of things that various people were telling me would fix my autism or fix my headaches or fix my neuromuscular clusterfuck that at that point we didn’t even know it was neuromuscular in origin. I saw quacks who convinced me I was allergic to vast arrays of foods and that terrible things, maybe even death, would happen to me if I ate them. Certainly, if I ate them, it showed I didn’t care about my health.

But it wasn’t just that.

It was the way I grew to enjoy restricting more and more foods. I’d start looking up what foods were supposedly contributing to what conditions until even the quacks were alarmed at what I was and wasn’t eating.

After a couple months of that I was skinny as a rail. Straight up and down. And that was before I started starving because I couldn’t feed myself, for reasons totally unrelated to eating disorder. And the stuff I did eat was the few things I allowed myself to eat, and that didn’t help at all.

Every time I restricted a new food, I’d feel a sort of high. I’d feel more energetic, more alert, healthier in some way. Happier. That was not because I was actually healthier. It was because when you start lacking nutrients, your body makes you more alert, because it’s trying to make you able to find food better. Then, as that sensation wore off, I’d start to crash. My head would get fuzzy and my body would feel terrible. And then I’d have to find a new level of purity to attain in order to get that feeling back for a little while. And it went into a very vicious cycle.

Body hatred didn’t help either. Although it wasn’t a major component of the eating disorder for me the way it is for many people, I do remember reveling in the way I had no more stomach, the way my bones poked into things. On one level I hated the feeling and knew something was wrong. On the other level I felt so glad I was no longer fat. And that was one factor, even though it was a minor factor. Never mind that what I call fat here, actually is more like slightly overweight by current standards. The fact that I had a double chin (if keeping my neck in a normal position, which I rarely did) even when thin didn’t help matters at all in terms of the body image side of this. That’s just because of the way my head is structured.

And… When I found out about orthorexia, I weirdly didn’t have much denial about it. I could see that just about everything fitted me. Except for the thing about feeling superior to people who weren’t as pure. I did have a huge element of purity obsession in everything I did food-wise. But I never once looked down on other people or tried to convert them to my way of eating. My purity was very centered on myself and not so much on other people. I remember, in fact, not being able to stand what I called “evangelical vegetarians/vegans” even when I was vegetarian/vegan.

I do still also remember the element that happened when a good friend of mine was into the whole buy all the expensive organic crap thing. She’s the one who talked me into that element of things, and it just became one more way to restrict my food, although not as intense as the other restrictions. That’s why this book was so triggering to me, with all the talk of how everything’s better if its natural and organic and supposedly cruelty free and expensive and gourmet and shit. But being poor kept me from heading too far into that territory. It still made me feel inferior that I couldn’t buy that stuff, though, like I wasn’t passing that test of purity again, and thus very angry at people who insisted I should. I remember arguments with my upper middle class friend over it.

I also still remember how I used to run around reading every ingredient on the label. And quizzing restaurant people about every single ingredient. And feeling so virtuous doing so. Not because I had a legitimate food allergy — well I did, but that was in young childhood. But just because I’d been convinced that everything in my being depended on keeping away from tons of foods that were almost all perfectly fine for me.

Getting better has been really, really hard. Realizing I had to get better or I’d probably starve, wasn’t enough. Wasn’t nearly enough. But then with true eating disorders it rarely is.

No matter what, I still always have that temptation sitting there waiting, even after all these years, to restrict my food and become pure again. I had to set absolute rules for myself concerning diets. That I was not allowed to restrict foods except on things that were proven to be about health. And even then I forced myself to sometimes eat things I shouldn’t, just so I wouldn’t get too weird about it. I mean like skipping something from a reflux diet. I’m not talking about messing up with an anaphylactic food allergy here.

I’m really glad none of my doctors knew about this history when I literally stopped being able to eat, though. I’ve heard horror stories about people with gastroparesis being misdiagnosed as anorexic or bulimic for years before getting a proper diagnosis if ever. Because it makes you lose your appetite and throw up after eating. But it has no similarities to orthorexia for me at all.

It’s weird now that I am on a steady diet of the same exact tube feed formula day after day, because of the severe gastroparesis meaning eating through my stomach at all is no longer feasible. It’s almost like a weight has been lifted from my shoulders. I no longer have to struggle with the urge to restrict food, because I don’t eat by mouth at all.

I know there must be orthorexic people who carry it on even past the point that they need tube feeding for unrelated medical reasons. Some of them might love eating the formula. Others might see the formula as too impure and embark on a quest to find the perfect way to continue restricting through various sorts of blended food. Blended food is not as much of an option for me anyway, because it’s just too hard for me to pull off with a j-tube to be it worth my while to bother at the moment. But for people who have g-tubes, I suppose if they were actively orthorexic they could keep on doing that, just through a tube rather than a mouth. G tubes are bigger than j tubes, which is why you can get blended food into them easier without clogs. I have enough clogs to worry about without worrying about food related ones.

But anyway. Having the same formula every day feels freeing to me. It feels like I no longer have to struggle with what food to cut out, because I’ve effectively cut out all food. Not cut out all food for real, mind you. Formula is absolutely a real kind of food. But what I mean, is there’s no huge variety of foods to choose from where I’d have to worry about which to eat and which to restrict. So I feel like the entire urge to restrict is gone.

And I didn’t even know that I still struggled with that urge that much. Maybe I didn’t. But it was still there, despite my not having restricted in ages. And the way I eat right now, seems to eliminate the entire conflict of to restrict or not to restrict. Because I can’t exactly go inside of the formula and measure out which parts came from where and then cut some of them out. It’s all blended together long before it reaches my house. So it’s much easier to deal with than food was before this.

That’s not a super major consideration in all this. It just feels like a bit of a relief to no longer have that push and pull of “do I want to restrict or do I want to do the healthy thing?” Where the healthy thing is not to obsess on dietary purity in any way. Not to cut things out and feel virtuous and pseudo-spiritual and pure and crap doing it.

At least…. All this is how I think it all happened. It’s all very tangled in my head, and it’s sometimes hard to know what is what. But I definitely went through a period when my friends were worried about my health due to the amount of foods I kept out of my diet. And it has definitely been a struggle to stop doing that. And it definitely interacts with gastroparesis in ways that are sometimes bizarre and unexpected. And this book on tube feeding was wonderful in every other way, but it definitely stirred up a lot of shit related to all this. Because the entire section of blended food recipes was like a list of different restrictive diets people use on themselves and their children, often with an element of purity involved rather than based on the actual health properties of foods. Not that I’m calling them all orthorexics, I don’t know them nearly well enough, but it’s often coming from the same culture that the author of the article described — where orthorexia can really get started and begin to thrive, in susceptible people.

It’s also why I find pretty much all evangelical dietary stuff much more toxic to me than it is to the average person. One reason I almost didn’t post this, is I was afraid next time I reacted to someone, someone would say “oh that’s just because she was orthorexic”, rather than because I have legitimate objections to them in general, as in not just limited to the situations of people with eating disorders. And I can’t stand listening to people wax eloquent about the virtues of restricting zillions of foods in bizarre and potentially harmful ways, no matter how popular their particular fad diets have become.

Oh and I do have legitimate dietary restrictions. Even now, with the feeding tube, I have to be low fat and low fiber, because fat and fiber are terrible for gastroparesis, and fiber tends to give me blockages from constipation. (Yes, you read that right. Fiber acts in complicated ways. It’s not just that it you add more fiber you’ll shit better. Following that advice nearly got me killed. Fiber can also add bulk to your stools, which in susceptible people can cause blockages.) So my current food is low fat low fiber high protein. But that’s a far cry from eliminating a list of twenty or more foods and food ingredients because you feel like you’d be horribly impure and immoral and bad and unhealthy and bad if you didn’t.

Anyway so that’s my best effort at describing what orthorexia has been like in my life. It’s not complete. But it’s also past four in the morning. I wonder if someone gave me the caffeinated coke instead of the decaf because I haven’t slept tonight at all.

There. Now I feel a little better, having explained what orthorexia is and how it affected me. Because I wasn’t sure if people would get how health food crap can mess up my head.

Also this is why I have a serious problem with “don’t bother to tell your friends that there may be something wrong with the hugely restrictive diet they’re on supposedly for disability-related reasons, because everything a disabled person does is okay and shouldn’t be questioned” shit I used to see in segments of the online disability community. Because if people hadn’t kept questioning me, if nobody had told me about orthorexia, I might either not be here or have gotten a lot sicker at a crucial point in my life. Yes it is okay to tell your friends they might be really messing things up. Because its easy to restrict one thing after another after another and not realize how far you’ve gone. It’s also easy to believe quacks who tell you that if you cut out half the known foods in the known universe, you’ll get better. Neither of these things is a great thing to encourage or stay quiet about. Even if there are right and wrong ways to say something, it’s not ~oppressive~ to be genuinely concerned.

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