NB: I really, really, really don’t like talking about this. But I’m doing it anyway.
We live in an ableist society, that much is inescapable. I can’t go in some stores because they’re either not wheelchair-friendly—and if they are, the layout is tricky and often likely to contribute to injury (think scraped knuckles, crushed hands, etc, clothing rails to face)—or I’d have to call for assistance to even be helped into the store in account of them needing to set up a ramp. (Which I literally cannot do, because of my severe social anxieties and phobias.) Never mind the height of some allegedly “dropped curbs”. Trust the guy in the wheelchair; they ain’t dropped. It’s like someone though about making them accessible—but got bored partway through and only lowered them so much. More of the curbs on the streets in my town are at least 1.5 inches. That might not sound like much, but trust me, it is. And some are more.
That’s not good enough.
But what’s worse is that this ableist society is that we internalise so much of this crap. The same way that women (or anyone, for that matter) will internalise misogyny to the point that they might not realise it’s there. I internalise ableist attitudes all the time and I wish I didn’t, wish I could remove the hurtful thought patterns before they rear their ugly little heads and make me feel wrong. Before they make me feel like I’m a lie.
I worked out yesterday.
I literally don’t know how much I’m going to write about this, because I don’t know how much I feel I can write without feeling too exposed. If I were female, talking about this would feel less alien, more expected. Instead, it feels almost like admitting some kind of cardinal sin to admit that, for most of my life, I’ve had disordered eating. I’ve binged and purged, I’ve restricted food, and I’ve purged whilst restricting. The latter was my norm for a very, very long time. And I’d stopped. I managed to develop a better relationship with food and focus on myself. I worked out, learned to allow myself more calories, and managed to break these crutches of limiting food and purging.
Then pregabalin happened.
Long story short, I detest myself. There aren’t words enough to convey the sheer level of disgust I feel for myself. I loathe every inch of myself. Fiercely. I’m angry at myself; ashamed of myself. And I know where these thoughts lead. Quite literally down the drain. I never stopped being afraid of food, never forgot the exact calorific value of hundreds of foods and ingredients. I never stopped being able to restrict and/purge so, so easily.
And yesterday I found a new reason to hate myself. I worked out. It hurt, it was hard and I’ve just been through one of the hardest and longest extended flares I’ve ever had, and so it was a big victory to be finally taking back some of the control that pregabalin took from me. Yet, here I am, feeling guilty. Feeling wrong.
Exercise is healthy, let alone for chronically ill people with chronic pain diseases. Absolutely anything we can do to fortify our bodies is very A+++. It’s good for me to work out. It hurts like hell and in the short term it will exacerbate my pain and fatigue – but it’s good for me and I happen to love it.
But I feel like I’m lying when I think of the Blue Badge in the window of the car, when I think about wheelchair access in town and how I’ll have to be very careful with my energy and spoons to survive the holiday period. I feel like I’m lying when all I did was medicate my chronic pain illness with some exercise.
Because people in wheelchairs can’t walk, right? Because chronic illness is all in our heads and it’s not that bad all the time, right? Because the disabled aren’t able to do anything, right? And that’s why we’re disabled? Because we’re just not normal, right?
But still I’m excruciatingly aware of how ableist my own chastising was. I’m not allowed to exercise like a normal person, because I’m also chronically ill and use a wheelchair, right? I have to be quiet about exercise because I’m disabled and therefore not abled, and people might think I’m a fraud, right?
But that’s certainly not how it feels. I feel ashamed and wrong for working out today, as though I have somehow ‘broken character’. It’s the same way that I don’t say when my pain levels are lower, as if somehow being in less pain will make me less visible, as if I matter less. As if I’m only valid with my chronic illness when I’m suffering more. I well I’m not breaking character, because I’m not a character; I’m Leo and I live with an incurable, disabling chronic illness. As if that’s not enough to deal with, here I am, hating myself even more because I actually did something good for me. Something that helps me not do things that aren’t good for me.
I’m not going to stop trying to build up to a regular work out schedule, but that doesn’t mean I’m not going to feel like this every time I load up the Kinect and start to do some virtual reality punching bag. I just wish that part of me wasn’t going to be inevitably be part of the thing I’m beating on.