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Gather round the imaginary campfire, friends; it's time for Chronically Ill Feelings Hour with Rachel Sharp
It is (and I speak from years of experience here) VERY FUCKING HARD to grok your own disability. Like your own death, the brain does not want to hear it. Even once you have all the facts, the brain will fight you.
Maybe it's different for people who grow up in self-evidently disabled bodies. I don't know.
I do know that when my body really started falling apart (age ~27) I could not have conceived of what I was in for, and what's more, I didn't even try.
I do know that when my body really started falling apart (age ~27) I could not have conceived of what I was in for, and what's more, I didn't even try.
You go to the doctor.
The doctor fixes you.
That was how it was.
Until it wasn't.
And much like an American being unable to imagine, say, the power going out and never coming back on, I did not fully realize that I wasn't getting better until I was almost dead.
The doctor fixes you.
That was how it was.
Until it wasn't.
And much like an American being unable to imagine, say, the power going out and never coming back on, I did not fully realize that I wasn't getting better until I was almost dead.
And this is the real bitch of it: even after being diagnosed, having serious and incurable things on my chart, normalcy bias continued to eat into my logic.
Normalcy bias is when your brain latches on to any evidence that says things are "normal" and ignores any to the contrary.
Normalcy bias is when your brain latches on to any evidence that says things are "normal" and ignores any to the contrary.
Normalcy bias is why people don't get out of the way when a hurricane is coming. Why people can talk themselves into thinking the pandemic is a hoax.
And why it's so hard for people like me to call themselves disabled.
And why it's so hard for people like me to call themselves disabled.
After nearly dying, and spending years trying to get back to normal, I had to accept that I was disabled. There are things I can't do. My doctor says I'm disabled. My parking placard says I'm disabled. The goddamn government says I'm disabled.
And yet...
And yet...
My brain is still loathe to believe that I am disabled. If I have a couple good days, or accomplish something that is difficult, the belief sneaks back in.
"Well, okay, I'm disabled, but I'm not THAT disabled."
That thought right there is fucking treacherous.
"Well, okay, I'm disabled, but I'm not THAT disabled."
That thought right there is fucking treacherous.
All the work I have done to accept my physical condition is constantly trying to undo itself.
And when it succeeds, I set myself up for a crash.
And when it succeeds, I set myself up for a crash.
Today, a doctor said she didn't normally see an infection like the one in fighting "except in people undergoing chemo." I imagine she was being tactful in not saying "or with AIDS." But my immune system sucks. We both know that. Just not for either of those reasons.
And what I heard was "interesting, you're worse than I thought."
My brain does not want to hear that.
And because my acceptance of my illness fades between catastrophic events, I was suddenly not okay.
My brain does not want to hear that.
And because my acceptance of my illness fades between catastrophic events, I was suddenly not okay.
This is what it's like. We can smile and joke and decorate our mobility devices, but inside, this is what it's like. It hurts. Over and over again. And we struggle. And with variable illness comes variable acceptance.
I don't have a neat ending for this thread. It sucks. It is what it is.
I say these things in public because I think the main strength of humanity is understanding ourselves and each other as best we can.
I say these things in public because I think the main strength of humanity is understanding ourselves and each other as best we can.
So if you don't know what this is like, I want you to know.
And if you do, I want you to know you're not alone.
And if you do, I want you to know you're not alone.
