3 August
Pattern of deterioration is a comment I've heard made about certain autistic people. I feel that describes me. The pattern I'm noticing is not visible to anyone but me and that is terribly painful. Would it help me if it was apparent?
I have felt the pattern repeating each time I've needed to express concerns about my wellbeing which has always resulted in a mystifyingly weak response allowing my crisis to deteriorate over my adult life. I didn't know I wasn't making things clear.
I also didn't know (until much later) that this was actually a crisis. I'd told the GP what I could, I'd sought and had counselling (a lot over the years) and worked so hard to be responsible. I absolutely believed I was doing everything I could.
Each visit to the GP was about something which on it's own didn't sound significant. But I didn't know that I was already in a mess much worse than I could show. In my 20s I had a burnout and was chronically stressed.
I didn't know what I needed or how to say it.
I needed to express that I didn't have the right tools to look after myself properly and that it was having a drastic impact on my health. I wouldn't have got anywhere if I'd said it out loud, but if I'd at least known, I could have trusted myself more when professionals seemed unhelpful.
The pattern of deterioration is important because if I could see it acknowledged in my medical notes it's lasted 40 years or more, I'd be less afraid of being judged to have not looked after myself properly. With so much pressure around claiming benefits this is a massive fear.