How trauma made me disabled: our voices matter!
Content warning: This post includes the topics of sexual assault, medical conditions, childhood trauma, mental illness, physical trauma response, and suicide.
I'm disabled in more than one way. I have autism, and I also have a physical disability and illness called Rheumatoid Arthritis, which is an autoimmune illness that primarily affects the joints in the body but also lungs and other organs. I have the type that mostly gets swollen so it's not always you can see my disability right away... That doesn't mean it's easier though! I'm stiff and in constant pain and I'm not as flexible as I should be sometimes. It's hard for me to exercise when I have a period of really heavy pain and joint inflammation. So lately I have gained some weight too. It's hard! I take injections for my RA every week, alongside painkillers and other daily pills for my condition. Sometimes I also need cortisone injections directly into the joint, once every 6th month to a year. It's truly a lot...
So... how did it get started?
I got diagnosed in early spring 2021. A year before I got ill I was violently raped and after that I attempted suicide. Earlier that year I had found out that a childhood best friend died by suicide as well. So after the rape I wanted to follow her and choose death. I was found, though, and taken to the hospital. I saw a surreal world, like I had stepped into a mirror, everything was surreal. Then I woke up with a machine giving me oxygen and a plastic tube down my throat. I woke up by trying to - in my confusion - trying to pull out the tube. I survived, apparently, and I was very disappointed for a long time to come.
Given my trauma history with childhood abuse like neglect, physical, emotional, and sexual abuse, and early adulthood trauma, with my ex partner and the domestic violence he inflicted upon me, it was just a matter of time before the stress in my body would result in a physical illness. That's how I got rheumatoid arthritis. Doctor's have told me that all the internal stress and post-traumatic stress actually triggered this medical condition. Because we don't have any particular history of autoimmune illnesses in my family (more than my grandfather's sister and my second cousin...). So I would probably not be disabled now if not all those things happened. And yes, you can see medically that I'm ill, for example when my blood was taken, that this is a legitimate, real, condition and not psycho-somatic in any way!
How my life changed
I had never been this ill before. When I first got RA, I wasn't able to walk and I was bound to my bed for a period of time. Now I can walk, but not always long amounts and not always without it looking stiff and a little bit different. I had to rearrange my life completely. Rest more than before. Eat differently, since different food triggers the inflammation. Move my differently. I wasn't able to exercise as before so I ended up gaining a lot of weight. It was horrible for my confidence sake. I also got extreme fatigue and started to experience brain fog (meaning my head felt foggy and I couldn't think clearly). At one point I could sleep for over 24h because I was constantly sleepy because of the pain. When I was awake I felt sleepy all the time.
It was hell. It still is. I've just got a new kind of injection that I hope will help me.
Now what?
Now I am to educate people online. The worst part of being ill and disabled is the lack of knowledge. So I want to contribute to people's general understanding of disabilities and their openness to learning about it. I still meet people who don't understand at all. They say things like:
- "have you tried (insert supplement's name here)"?
- "do you do yoga? It helped me with (insert non-chronic problem here)"?
- "I know, once I had back pain and it was killing me!!!"
- "you should exercise, you know, you are a little bit bigger, maybe that's it..?"
- "Have you tried herbal medicine?!"
- "Oh, you just need to go out more!"
- "Maybe if you come out and meet some friends and socialise it will become better??!"
And other stupid comments. Sure, I enjoy yoga and herbalism but that's certainly not the answer to life and it won't be the entire solution to my disability! And yes, I know I'm fat, thank you very much!
Ending thoughts
I truly believe most people don't choose to be ignorant. But nonetheless many come across that way. Part of starting this blog is an urge to be a light in the tunnel. To do something. Be that voice. Be one of many voices. Maybe one day we will be heard!
Written by Trix