I get my days where I think I’m part of the crowd, not much different to other people.
Thing is, I don’t see outside of myself and I don’t fully understand how I appear or come across or what I look like, sound like or seem.
It’s difficult as my perception is that I ‘fit in’, maybe I’m more odd than I know.
I have coloured lenses on my glasses and with those, I’m more aware of being different and there are times wearing them is difficult and I’ve had reactions that do upset me.
I try and not get too focused on them, but if I’m wearing ‘my blues’, I just keep away from people, go around and not be too interactive.
Before getting my ‘blues’ I used my sunglasses for same purpose, dealing with lights in places and got slightly less of a reaction, but some oddness from people.
I don’t want to be specific but sometimes, just being different is enough to throw people and it’d be lovely not to have a reaction or feel different or odd.
I think when I became more aware of reactions, it brought my mood lower. I think when I realised my appearance I felt a bit hurt. A bit thrown. Not too many people ask about the lenses on my blues.
But also, not too many people comment on my ‘otherness’ on a day to day basis. I think of it as an approximation. My masking isn’t always ‘on point’, it’s close to right at times and close to normal at others.
I have to think eye contact and hand gesture and think slow speech and volume and tone of speech. I need to think rhythm of voice and use of language.
Dialling it down, if you will. I need sometimes to phase out of things and at other times not to ‘ghost’.
So, I can probably think as I don’t have a stick or a wheelchair that I’m not disabled in that obvious way and that I’m invisible disability or whatever but there again are people with horrible internal conditions that are of course neurotypical. It’s thinking of a scale of issue for me.
I can tick incurable.
I can tick life long.
I can tick degenerative (a Fixed viewpoint and aging won’t help).
I can say my quality of life is affected and I can say that it affects my day to day decisions.
My executive functions are wonky, my communication is wonky and so are my senses in that I hear and see and smell too much.
My balance is probably a fraction off, it really shows when I ride my bicycle.
My humour can be off and I can be inappropriate and I can be out of order.
But, still I don’t qualify as ‘disabled’ as first time around I was refused PIP. (Believe me that hurts)
So, I keep trying and going and hoping something gives me a break. I’m under overwhelming stress from my life and what’s going on.
I try not to break myself because of it, but my meltdowns this week have thrown me and put me off my usual sort of ‘keep going, don’t break’ mentality.
I know that maybe I don’t look different, or don’t seem disabled. My condition is a difference and if the world was fair, I’d get some adjustments and some thinking space in a lot more situations. I think there’s a chance of better understanding and some amount of leeway for how I am.
At the same time,I don’t think I should have to feel stigmatised by wearing my blue lenses or to ever feel that I should need a badge or an armband or something to get a seat on the train or be treated normally (nicely or with empathy.)
So I’m Invisible/Visible. Disabled/Able. Problem/Normal. Believed/Doubted.
I didn’t choose to be. Just am.