The pain of being seen

Most of the time in my life I’ve spent in a mental state of subtle and confusing otherness. I often feel some kind of detachment to people around me, like there’s some subtle but fundamental difference between how we experience the world. Since I’ve been ill and needing healthcare for a couple of years I’ve spent a lot of time trying to explain what kind of adjustments I think I need to be able to access the healthcare, but my attempts to explain have been a major failure. It doesn’t matter what I say, most of the times it’s like they haven’t heard a word. This doesn’t only happen with healthcare professionals, this is a theme in all areas of my life since I was a kid. I often wonder if my way of feeling, thinking, interpreting, and processing information is inconceivable to other people. If my way of existing is simply not possible for other people to grasp, not even as a theoretical possibility.

Over the last year, when I’ve read more blogs and books written by autistic people about their experiences it’s like reading about somebody who shares my otherness and also can phrase it into words. Not at all that I recognize myself in everything that I read, it’s far from that, but a couple of elusive experiences are suddenly perceivable to somebody else. Like my way of being isn’t only shared by somebody else, it’s also seen, it’s validated, its existence is recognized. That’s a wonderful but also shattering thing.

Fundamental parts of me that couldn’t even theoretically exist according to people around me, now have names and are recognized by other people. It’s like my existence is recognized. It’s like I’ve been trying to peacefully explain and when that didn’t help I’ve been shouting, screaming, pointing, talking, crying with desperation in my attempts to make people understand why I’m hurting from things other people aren’t hurting from. And now people see the things that I’m used to being told don’t exist.

It’s a good thing. It makes me stronger, it’s comforting, it makes me stop hating myself and it makes me take better care of myself. But it’s also really painful because it makes me aware of that this isn’t a common experience to me. Memories from all the times when I was in school and had to run home to avoid having a meltdown in public are popping up and almost assaulting me. A lot of pain is being unleashed and I don’t always have the time to deal with it. I hope it won’t be like this forever, but right now I’m an exhausting pain and comfort roller coaster.

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