Book and comic reviews, and more from Amy Walker, a trans, disabled writer and reviewer from the UK.
Thursday 29 August 2019
Becoming Disabled
It's been a long while since I wrote a personal piece on this site, years even. For the most part things have been going well for me, and I've not really felt the need to share, but truthfully, I've been through a lot lately and felt the need to share.
I've been sick for several months now. It didn't start as anything serious, and at first I thought that it was just my bad leg giving me trouble. But the pain kept getting worse, and began to spread. It went from one bad knee to pain throughout my whole lower body. Then it spread further. I began to get pain in my hands, and started to find it difficult to do even simple tasks.
Work began to get more and more difficult, and I regularly had to sit in my car and cry before I was able to drive home because of how much pain I was in. It got harder and harder to get over my days working, and all my time off was spent in pain and tired, trying to get myself psyched up to going back to work again.
My doctors were worried about my symptoms and decided to test me for Arthritis, but the tests came back negative. Whilst waiting for these results things got worse for me, and I started to develop intense pain on the palms of my hands and soles of my feet. Standing would cause me pain, and holding things would feel like the skin was being stripped off my palms.
When this developed into just being touched by people feeling like my skin was burning, or that i was being cut my doctors started to worry that I was suffering from Fibromyalgia.
This is where I am right now. Multiple doctors are saying that this is the likely cause for what I'm going through, especially as all my symptoms lining up. I'm waiting on seeing a Rheumatologist in a few months time to see if I will be diagnosed. Until then I'm stuck in agony, taking pills that barely take the edge off the pain whilst I'm waiting to be told told what's wrong with me.
Sadly, things have deteriorated to the point where I can't work anymore. I was unable to perform my job, and even when trying it would leave me close to tears. I can't walk more than five minutes without it taking everything out of me, and some days just getting out of bed takes everything I have.
One of the worst things about this whole thing hasn't been the physical pain, though, it's been the emotional pain. I feel like my body has turned against me, and that's what hurts the most. I want to carry on being me, to be able to live my life the way I did before. I want to be able to have the job that I loved. I want to be able to go places with people. I just want to be the way I was.
That's been the hardest part. I'm disabled. I can't do everything that I could before. I need help doing simple things, and even then I struggle. And coming to accept that has been the hardest thing. Disabled wasn't a descriptor that I ever thought would apply to me, and in some ways I felt shame when it did. I know that that sounds horrible, and I don't mean that disabled people are bad in any way, or that they should feel shame, but it was the first thing that I felt at the time. I felt like it was somehow my fault, and that I was letting people down.
I felt that I was letting down the charity I worked for, and that stopping work for my health was a bad thing. I felt that I was making it so my partners and I couldn't go places or do things because I was unable to be physical. I felt like I was worth nothing because I was stuck at home. But that's not true. That's how a society that's obsessed with work and capitalism wants me to feel. Society wants me to feel bad because I don't have a job anymore, to be ashamed for receiving disability benefits to survive. But I won't feel bad about that. I didn't choose to be sick. I didn't do this to myself. And I won't feel guilty for trying to survive.
I'm disabled now. That's my life. Maybe I'll get better one day, maybe I wont. But either way, I won't be made to feel bad for what I'm going through. I'm disabled, and I'm proud that I'm surviving.
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