TW SH, disabled grief, dissociation, lack of proper medical care, agoraphobia, medical trauma
This one is going to be a bit of a ramble, as always tw in the title and in the tags.
I don’t think we talk enough about how hard it really is to be multiply disabled, and have it be your full time job, and still be expected to live an average, functional, every day life.
The reality is never that easy.
As a medically complex individual, who also lives with severe mental illness, my entire life is spent dedicating time actively to making sure I am doing as best as I possibly can be at any given moment.
Friends, I am not doing the best I can be at any given moment.
I have not been able to access regular medical care for two years now because of the pandemic. I haven’t seen any of my specialists except through video visits. I’ve had blood work done exactly once.
My body is always a shambling house with a cracking foundation. There is never a moment I am not in complete agonizing pain.
The thing about this level of pain is that it becomes boring. It becomes boring to have to limit my activities, and to have to keep myself together, and to have to just keep on keeping on. So I do what I’ve always done best when things get too overwhelming, and I dissociate. This has lead to a relapse of my self-harm.
I am overwhelmingly saddened by the fact that my mental health has deteriorated so badly. I am mourning the loss of all of the hard work I’ve spent the past 18 years doing. I know that it’s not invalidated, intellectually. I know that I’m not where I was 18 years ago. But where I am is not good. I can hardly leave my house, even when it’s necessary, because I’ve dived back into my agoraphobia. I’m working on this as well as I can.
My psychiatrist has me on a medication that actively makes me worse every time I’m on it longer than 6 months. It’s been about 9 at this point, and every day I have a literal hysterical breakdown where I am crying and laughing all at once because emotions are just so goddamned overwhelming that I can’t handle them or process them any other way. He knows that this medication does this to me, and yet he still prescribes it cyclically.
The antidepressant is killing all of my good feel brain chemicals, which leads to dissociation, which leads to self-harm. It seems like every road lately is leading back to self-harm. No, I am not at risk of unaliving myself, I have no desire to do so. I just am back to compulsively doing this, as if it’s a ritual that’s going to alleviate all of the other things I’m feeling when all it really does is make me feel guilty.
The intersection of medical complexity, and mental illness is one that is largely ignored in disability activism. It seems that you have to be either one,or the other, or you have to focus your entire being on only one of the parts of you when they are actually a multi-headed beast who regenerates every time you feel like you’ve killed off one of the heads. Living with the constant struggle of battling a Hydra because that’s the only option you really have.
People tell me they don’t know how I do it, that they wouldn’t be able to keep up with all of the things I keep up with. Every time they say that I reply with the exact same answer: I don’t have a choice. This is the life I have, this is the body I have, and I have to accept it as it is and treat it as kindly as I can because when I ignore it, it will make me take care of it. I don’t have the luxury of just not taking care of myself for even one day, because if I skip one day of my maintenance routine, I’ll be bedridden for a week.
I wish so badly that I could make people better understand what it’s like to feel like you’re constantly being dragged under while simultaneously trying to pull your own self out of the Swamp Of Sadness, as if you are both Artax and Atreyu at the same time
jbbartram-illu
gummygunk
yousharknotpass
turnnoffyourmind
vaporwave
annaxmalina
kaledo-art
germansingergirl
