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I wanted to make a thread about the divide between how chronically ill and disabled people understand ourselves and how medical professionals treat us.
I wanted to. I still want to.
I’m crying instead, and I’ll tell you why.
I wanted to. I still want to.
I’m crying instead, and I’ll tell you why.
I’m crying because I remembered what happened when I mentioned that I was using a manual wheelchair 
to my rheumatologist.
She was immediately dismissive. “You shouldn’t be using that or other mobility aids” is roughly what she said. And in that moment, she lost all my trust.
to my rheumatologist.She was immediately dismissive. “You shouldn’t be using that or other mobility aids” is roughly what she said. And in that moment, she lost all my trust.
But Noor, doesn’t she know best? She’s the doctor, after all.
No. I shouldn’t have been using THAT mobility aid, but I needed and still need mobility aids. All she cared about was that I could get to work and get home and sleep.
The rest of my life had no role here.
No. I shouldn’t have been using THAT mobility aid, but I needed and still need mobility aids. All she cared about was that I could get to work and get home and sleep.
The rest of my life had no role here.
The worst part of it is that, on paper,
she fills my requirements. She’s highly qualified. She respects my gender. She treated my fibromyalgia seriously, and tested me thoroughly for autoimmune conditions.
It’s *just* this one thing. But this one thing is...kinda everything?
she fills my requirements. She’s highly qualified. She respects my gender. She treated my fibromyalgia seriously, and tested me thoroughly for autoimmune conditions.
It’s *just* this one thing. But this one thing is...kinda everything?
Its my ability to get to her office not in screaming PAIN while ALSO not spending $30 on taxis.
It’s her out of her realm of understanding that I want to go to social groups-to date, to go on road trips, TO ORGANIZE and BE ALIVE.
It’s her out of her realm of understanding that I want to go to social groups-to date, to go on road trips, TO ORGANIZE and BE ALIVE.
And yet, I continue to see her. Because her colleagues believe the same fucking thing.
And this is the problem in a microcosm. I’m seen as a petulant child being told what to do for my own good-not a collaborator. Not someone with my own independent health goals.
And this is the problem in a microcosm. I’m seen as a petulant child being told what to do for my own good-not a collaborator. Not someone with my own independent health goals.
What I want-to be able to live a full, vibrant life and be in less pain? It doesn’t matter.
And...that’s it. I wish I knew how to fix this. I’m a professional sick person, but my methods to access care require a lot of emotional labor. I wouldn’t wish that on anyone.
