Growing up without diagnoses meant growing up not understanding myself. Not understanding myself meant not taking very good care of myself. Not taking very good care of myself meant recurring episodes of crash and burn.
Every time it happened I thought that there was something wrong with me that I needed to fix. Every time I had gone through therapy of some kind and was temporarily feeling better, I thought that now it won’t happen again. Throughout my youth I thought that as an adult it won’t be like this. When I was between 20 and 30 I was sure that I would be able to enjoy the lifestyle I wanted. I was going to get my degree, become a researcher and live my queer life travelling and exploring life. I was going to be a healthy adult and not collapsing all the time.
That didn’t happen. Instead, not only did I collapse way worse than I could possibly imagine. It turned out I had a number of disabilities that I need to pay a lot of attention to. It turned out that I can’t be “fixed” to be “normal”. On top of that I also got an illness that is chronic and it limits my life serverely. Today, I’m in my early thirties, practically depending on my partner and I can’t even be the parent I want to be. I don’t work. I don’t pick up my kid from school. I leave my house once a week. I rarely cook. I can’t read for more than at best an hour a day. I used to push myself hard at the gym, I used to dance, do yoga, run, ride a bike and so on. Today I can’t even take a walk.
I’m mourning everything I thought I was going to have but never will have. Not that I ever had all of it. I so badly wanted to perform well in my studies and sometimes I did, but despite learning a lot of things easily, I found it so hard to take exams and got very varied grades. I could never handle an intense social life for more than a short period of time.
If I had known that I had Hypermobility Joint Syndrome/EDS, if I had known that I was autistic and had ADHD, I could have taken care of myself. I could have understood myself and not hated myself and felt that I was wrong in all possible ways. I could have found other people like me and been supported. Maybe I would have gotten ME/CFS anyway, but at least I could have avoided making it so much worse because I was so used to pushing myself hard just to get through an ordinary day.
This is why I feel so frustrated when people claim that diagnoses are always bad, and that people shouldn’t define themselves with their diagnoses. This is why I want to scream when people tell me that I need to see myself as more than my diagnoses. Denying disabled people the possibility of knowing ourselves, of getting a language to express our needs – that’s pure oppression.
The ironic (and tragic) thing is that if I had grown up with a better understanding of myself, I think I could have had a lot more of the life I dreamt of. Accessible education, better self-care and so on most likely would have given me opportunities to live that life. Not being diagnosed while growing up is probably the single most limiting elements in my life.
Let me have my identity, language and self-understanding. I will never have the life I thought I was going to have, but I can finally make peace with myself.