Mourning the diagnoses I didn’t have

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.

 

My skin is being stripped

Content Warning: This post deals with PTSD, I think.

Something is happening to me and I don’t understand what it is. It seems like almost everything I read or watch, all stories I take part of make me feel like my skin is being peeled off. All books I’ve tried to read the last couple of days have in some way conveyed vulnerability and it gives me such emotional flashbacks, even when it’s about situations far, far from my own experiences.

I’m all confused and I can’t talk about it because I have no words. Different themes are boiling together and flavouring each other and I want to cry but I can’t. It’s about fear and longing and mourning and feeling humiliated for what I once thought I could have. I want to seek comfort but I can’t and that was actually what I intended to write about, but my thoughts are too elusive.

I know that I can’t seek formal diagnosis or be openly autistic, I have to protect my child. I know that, but I don’t know for how long I can be silent in the closet. I’m living too much of my life as fake and I recognize this from before I came out as bisexual and before I confessed to my mom that I had an eating disorder. It feels like a part of me is dying every time I pretend. The frustrating thing is that even though I’m not openly autistic and it’s painful to pretend, I think I’m too open. I’m open with not being NT, about having ADHD and having other disabilities and that seems to be too much. I’m too open and still feel fake.

But I have to stay in the closet.

By the way, if you have figured out who I am, please let me know.

Overwhelmed or not caring?

I’m dizzy from too little sleep but a thought is occupying me so intensely that I want to try to write about it anyway.

Autistic people are often described as lacking empathy and I wonder how much of that misunderstanding that has to do with an interpretation that overlooks sensory overload and emotional overload from hyperempathy.

For me (I have no clue if this is common or not), I seem to be interpreted as cold when I’m a bit overwhelmed. When I’m really overwhelmed I often cry, but before that I almost freeze. I have a mild kind of shut-down. My face and body language don’t do much at all, I avoid eye contact and I don’t know what to say. Since I get overwhelmed easily, this happens a lot.

Years ago, I was in love with someone. She was in love with me and the tension was strong between us, but for a number of reasons I didn’t think anything would happen. One day she kissed me. Coming close enough to perceive her scent, the feeling of her skin and her hair, the fact that it was happening, the crisp air, the trees surrounding us that looked like they were on fire in the sunshine that was surprisingly strong for October – all of it was too intense for me. It was wonderful but too overwhelming for me to grasp. The rest of the day I could hardly talk and my ability to focus was gone. I felt like the floor I was walking on was moving and I was in a state of overload. Later I found out that she had been disappointed that there were no magic in it. She had expected it to be more intense, considering how much tension there always was when we talked.

This is just one occasion out of many where I have felt overwhelmed but afterwards found out that other people thought I didn’t care at all or that I didn’t feel much. I’m interpreted as cold and without feelings when in fact, I’m feeling more than I can handle.

As I wrote in the beginning, I don’t know if this is common or not. However, it hurts like hell when people accuse me of not caring or lacking feelings. Claiming that people (autistic people or any other group) aren’t experiencing emotions at all or are lacking empathy just because you lack knowledge is dehumaninzing and can be very harmful.

Compliance, inspiration porn and shame

When I started this blog I was in a state of confusion and anger. I had just pushed myself to sensory overload and PEM (Post-exertional malaise) and was disappointed with myself for doing so, but also terribly ashamed of the fact that I didn’t have the strength to do activities that other people seemed to take for granted. I tried to do them but ended up in that awful state.

I chose the name “the uninspirational” because I was fed up with always being told that I was just lacking motivation or that it was my fear of certain activities that made me ill and disabled. When I pushed myself to the point of harming myself I was told I was inspiring people.

There are good stuff written and said about inspiration porn from other people, Lydia Brown and Stella Young for instance, but one of the things that is a huge deal to me is that inspiration porn makes me so ashamed of myself. I carry a lot of internalized ableism and when I can’t live up to the “inspiration porn” stereotype, I feel ashamed. When I try, and end up harming myself, I feel ashamed of that. No matter what I do, the inspiration porn uses ableism to make me think very degrading things about myself.

Inspiration porn is bad in many ways. When I was in my bed, all feverish and trembling from PEM and sensory overload, I suddenly felt desperate and angry and created this blog. It was an impuls, a very good impuls.

I thought about this today when I was reading tweets tagged #ComplianceMeans. Because when I comply to the rules of inspiration porn, I end up harming myself. Compliance means being self-destructive and is fuled by shame.

Sensory overload and gaslighting

I want to talk about sensory issues. So often when I hear people talk about autism or when I read about it, the sensory differences are completely overlooked. This needs to stop. Now. This needs to stop immediately because overlooking it harms autistic people.

Not understanding how excruciating it can be to be forced spending time in a noisy envinronment or eat certain kinds of food or a lot of other things is to not understand autism. Yes, sensory differences vary a lot among autistic people, but not understanding what a huge impact it has on a lot of autistic people’s lives is to not understand autism. I’m not going to be modest about this opinion because, frankly, I’ve had it.

I’ve had it with meltdowns and sensory overloads in my life. I’ve had it with people who think that I “feel a bit tired” from noises. I don’t “feel a bit tired”. I want to die when the sensory overload is too heavy. The pain from all unprocessed noises, sensations and visual information is so much worse than the pain in my joints. My memories from school are about being forced to spend time in places and performing activities that put me in sensory overload. I have nightmares about that as an adult. I have flashbacks. I can talk a bit about what it was like going to school but most of the memories are so painful that I can’t talk about it.

The fact that nobody admitted that school actually was harming me makes it unbearable. It’s gaslighting. Saying to somebody that what’s happening to them isn’t happening and making the person unable to trust their own perception of their experiences is a powerful way of making them hurt themselves again.

So let’s pay attention to the experiences autistic people have. Don’t ever claim you know anything about autism if you only focus on observable behavior.