I just spent the weekend trying to get my partially dislocated shoulder and a vertebrae in my neck back where they go on top of being on my period and I’m exhausted. My shoulder and neck are still out of place and I have to go to work and pretend im ok. It got me thinking though that I have to constantly pretend im ok and normal in front of everyone or risk losing my job, upsetting people or getting pity or apathy. Im so tired of having to put all this effort to avoid ableism and being ‘othered’. managing pain is a full time job but I also have to manage acting normal enough on top of my ‘actual’ job.
I wish I could just be myself but I cannot otherwise people treat me differently or think im “unreliable”, “boring”, “insensitive”, “a bitch”, “don’t have the energy we’re looking for”, “negative” etc. It’s especially annoying because no matter how hard I try to act and talk like im perfectly normal and abled, im still too weird for a lot of people, I unintentionally and unknowingly annoy them and end up rejected or ghosted. I don’t care that im weird and that most people don’t like me, I just hate that I have to be someone else to survive in modern society, even though im still broke and barely getting by. I have to be positive and meet unrealistic expectations of me no matter what im struggling with or I don’t survive school, get the job, make friends, make relationships and keep them.
Being on the spectrum and being disabled is a real bitch!
Trying to hold on to your dignity and trying to remain ‘normal’ whilst being a contortionist, juggler, sword swallower and then having to fake that you have social skills is quite a challenge too.
It’s not easy to have to live through the next stage of human evolution, but hey... you’ve got to keep a sense of humour, I guess.
You have the answers on how to address your concerns, there is just one word that needs to be adhered to “FOCUS” that’s how you complete each challenge. It’s lots of small steps, but when you finally reach the top of that mountain, the view is pretty amazing...
yeah. using humor as a coping mechanism and ignoring the pain is a big part of what keeps me from completely falling apart and saying “fuck this life, im out”. I do try to focus on just getting through the day and doing my best but it’s hard because while I have privileges like a home and family, but im trapped in this home, in my dysfunctional body, mind, in social isolation and in poverty. It just feels like a never ending battle with no guarantee it’ll get better, you know?
Sunday would have been a throw in the towel day but for my wife being home to find me.
Monday was a day of getting my mental shit together.
Today I am fine. I am fine. And if the ice beneath my feet gets thinner and I start hearing the cracking noises, I'll take a deep breath and get ready to swim.
As I see it none of us are fine. But if we find someone or something worth swimming towards or clinging on to then we will be
I get that, im very grateful I have my mom to help me when I can’t even move since she gets it because she’s disabled and autistic herself. All you can do is your best. what are ‘you’ “swimming” towards?
I have psoriatic arthritis that makes every move feel like your walking through a lake filled with peanut butter..... I stop saying anything to anyone even if they ask me how am I doing , after a while I start to think people see me as a hypochondriac So I suffer in silence.
Hypochondriac, victim, annoyance, pathetic, fool, liar, cripple, failure...they're all feelings we superimpose onto other people when we imagine them looking at us.
Most probably don't think anything of me at all. The remaining majority probably mean well and feel as helpless as me. But no one knows how hard it is to not grit your teeth but still bear it.
The one ('s?) I feel sorry for are the ones who are materially affected by the physical limitations, whose lives have changed and can't feel the pain to understand why, but who keep trying and keep picking up the pieces of life that I used to never even break. All while quietly suffering their own pain.
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