It’s easy for other people to doubt us when we say we have an invisible disability, after all they can’t see it and they either know nothing about the disability or what they do know is so stereotypical that it doesn’t match what they know of you. It still hurts when they say we are mistaken or wrong or that we don’t fit the box. These people don’t know what it’s like to be us, they don’t understand how our disabilities affect us because they can’t see it. It’s invisible to them.
It’s not so invisible to us, and yet so many of us still doubt ourselves. Shortly after self-diagnosing myself as an Aspie I started to doubt my ‘diagnosis’. I wondered if I might be mistaken. Maybe I was seeing things that weren’t really there. I didn’t quite fit into the box and Autism is such a broad spectrum that it’s not surprising I didn’t fully fit. For the next few weeks I went through phases of self doubt, then came the assessment. I was quickly given the Asperger’s Syndrome diagnosis, my doubts were quenched; for a while. It didn’t take long for me to start doubting myself again. Maybe the assessor had been wrong, maybe I was so good at lying I’d convinced him I was something I’m not. After believing for so long that I was the same as every other person on the planet it was easy to doubt my difference. Especially since that difference was invisible, all in my head. Then I found out about pathological demand avoidance and everything fell into place. I stopped doubting, I found where I truly belonged. Then, the same as before, the doubts started creeping in. Maybe I’m wrong. Maybe I’m just nuts and am trying to explain it away with a rational explanation. Maybe I want to be different so badly I’m seeing things that aren’t there. Maybe I’m lying to everyone, even myself. Look, I did that demand without any problem, maybe I’m just lazy. The doubts poured in.
This isn’t an unusual occurrence it seems. I’m not the only self doubter. That’s why so many try to get a diagnosis, so they can stop doubting that they are making things up. They want proof there’s something there. I bet people who are missing a limb don’t wake up thinking, what if I’m wrong, what if I’m not actually missing a limb. The proof is right in front of them for all to see. Maybe I’m wrong and they so wake up wondering if their disability is fake. I doubt it though.
My disability isn’t there for all to see. How ironic then when people say ‘they don’t look Autistic’. Did they think they were magic, able to see the invisible? Of course they don’t look Autistic. Sure some may have obvious autistic traits which strangers can pick up on but autism on the whole is invisible. After all, it’s a neurological difference. We can’t see into our brains. Not like that anyway.
So people base our disabilities on what they can see. They judge our behaviours, judge the way we do things, judge how we respond. Then they label us according to their perspective of what they see. Is it any wonder then that so many are misdiagnosed. Is it any wonder how some people can mask so effectively. Our brains don’t change, the way we see the world doesn’t change, the way we feel and think doesn’t change, but we can change how we respond, how we act; some of us can, some of the time anyway. So they doubt what’s truly there, because they can’t see it. Because we can’t see what’s there, we too doubt.
There are days I manage, days where my Autism and PDA don’t show as much. Those are the days I doubt most. Disabilities aren’t always fixed though, especially when it involves the brain. Some days I can meet demands no problem and other days I struggle to do anything at all. Some days I can understand what everyone says fine and others I repeatedly mishear. Some days my sensory issues are off the chart and I can’t stand any noise, smell or touch. Some days I can’t walk on cracks because I will have to perform rituals to ensure my feet feel even and right, other days it’s like my OCD never even existed. Invisible disabilities can wax and wane like the moon. This makes me flit between believing my disabilities exist and doubting everything. Maybe I am just lazy, slow and stupid. Maybe I am weird, odd and crazy. Or maybe I do have disabilities, only because I can’t see them I think they are sometimes not there.
Isn’t seeing believing?