This is the second part in a series in which I open up about living with chronic illness. The introduction can be found here.
It’s paradoxical to be writing this series and telling you that I can’t tell you my story. But there it is.
I can’t tell you my story because of the stigma. A full telling would necessitate a discussion of my condition. But I can’t do that and I resent this, because this account will suffer for it. It’s not that it’s a particularly obscure condition, but it’s not framed in most people’s heads as a health condition/disability and it generally doesn’t come with the severity I have it with. It must be said that I know people who have it worse, a lot worse, than I do.
But because it’s off-center from what most people conceptualise as a health condition/disability, and because it’s invisible, and mostly out of the blatant privilege of people of conventional ability, I face a huge stigma. I get outright denial: but seriously, is it real?; you’re a hypochondriac, suck it up; here, darling, I have just the solution for you. Sometimes I’ll even sit tight with a trigger because I can’t bear to tell whoever I’m with about it, not another person looking at me like I’m an alien – sometimes I’ve judged correctly that I can manage it, sometimes it makes everything worse.
All this has reached new levels of pain in the last almost four years, during which time my condition deteriorated a bit spectacularly. I never thought I’d get these effects and as such, and because they’re relatively untested, I don’t know if I’m still deteriorating. I had hoped that the severity would lift over time, and perhaps it will one day, but now not for a while. And the incident which started it off occurred under a breach of trust.
I can’t tell you my story because I haven’t always got the brainpower. Some days I don’t have the physical capacity to look at a screen and type away, but those are few. Mostly, it’s the case where I’ll be pumped, I’ll be switching on my computer and bringing up a blank page and then- I can’t do what I wanted to do. I can’t remember my thoughts from thirty seconds before or I can’t remember words – there’s little so frustrating as having meanings pouring through your head and not having the signifier – or I can’t work the logistics of handling a computer.
And I will feel disappointment and the resurgence of self-contempt. Not that it’s my fault, not that I could have worked harder and I could have done something. But still there’s that narrative running through: I should have done such and such to manage it better, I should have told so and so to stop doing that again, if only I’d taken a water bottle, if only I’d decided to stay home. If only I curled up into myself and endured, endured and never did anything.
The sad thing is, these instances are quite easy to prevent, but require the simple cooperation of those around me. There are some worsening factors I can’t avoid. Most I can. And largely, it’s the screw-ups of the people around me that land me in a sobbing heap in bed. And while I’m thinking that I do not have the energy or the fluid levels in my body to afford these tears, others happily go around their daily business with big innocent eyes.
Goodly gosh, I didn’t know. I’m normal, why would I know what to do? I can’t have done anything wrong. It’s not in my experience, so even though you told me how I could help and I didn’t, I didn’t do anything wrong, so I’m going to sit here opposite you, smile and politely laugh and tell you what a gosh darn shame it is, a bright girl like you, pity this had to happen.
I keep telling you. There’s nothing complicated or difficult or astoundingly inconvenient about helping me. Even if there was, basic human decency requires you to not set me back. Bigots, perpetuators of my struggle, I hope you feel the horror of what you’ve done. I can’t even express myself.
Readers, I can’t tell you my story because I don’t trust you not to be those people.
So, I can’t tell you my story. I can’t tell you as I’d like, anyway. But I am going to inhabit the spaces I can and not be silenced.