Disability Myths

Painting is called 'Optical Illusion (the mirror is the lie)'

..Well, disability myths, and myths about what it's like to have a rare illness.

Myth 1) If it turns out you have something rare the Doctors are all over your case like white on rice, because they're so fascinated to figure it out. The reality is there is no interest in a cure for a couple of thousand people when there are the cures for millions to be found, population wise and fiscally. In fact alot of doctors think eds is "just hypermobile joints" or "just stretchy skin" and show no interest whatsoever in the condition, which is merely perverse if you ask me, it is a fascinating condition that doctors outta be ashamed of themselves for ignoring, there are so many clues into how a body is SUPPOSED to work in the ways (and whys) my body wont.

Myth 2) Diagnosis will result in self respect regained and people stopping with the hypercondriac remarks, the only change is people no longer say it to your face (because they secretly know they're full of shit but the world is less scary if you can label people with horrendous illnesses as purely weak, it creates a comfort zone of it-wont-happen-to-me-its-not-even-happening-to-her-shes-imagining-it. I know which attitude I see as weak.)

Myth 2 (b) Diagnosis will mean the ceasing of the endless psychiatric referals and prescriptions of antidepressants. If it's in your head.. numb it, if it's real.. numb it. It is getting insulting, how much surviving do I have to do before someone shows a shred of faith in me? I dont need pacifying I need understanding and ideas on how to reclaim my life from this shitty illness.

Myth 3) If you have to go through some horrendous never-ending physiotherapy rehab or equivalent ordeal it occurs surrounded by doctors, therapists and enthusiastic friends and relatives. Mostly it happens in a cruddy nhs gym room, or some curtained off cubicle, alone (because people have limited time, and capacity to watch their loved ones suffering, that is the harsh reality of it), often with the inspiring backing noises not of some heartfelt uplifting music but of some poor woman with a serious back injury whimpering as some robust, cheerful physio pokes and prods at her and explains why the only fix is to battle through it and even though you know she has a greater chance than you of healing, regardless, you would give all the little joys you have left to not have her hurt so bad to be whimpering like that. If they are so concerned for my mental health should they not make rehab... er...rehabilitating?!

More to come but my everything hurts so have to stop

Night my loves x