I met with a nutritionist last weekend who asked what I do. I told her I was finishing up my PhD and the response was "wow you're so driven to keep doing this despite being so sick." 1/
Nah. I'm not driven. I was raised in a lower middle class family. I started working at 16. I worked 60 hours a week some summers to save money for undergrad. It's not about mental fortitude, it's about survival. 2/
Without a job I can't afford medical care. Some specialists in #EhlersDanlosSyndrome don't even take insurance. So if I end up on SSDI I will lose even more quality of life. I will lose the few moments of stable health I get. 3/
It's not fortitude when you're backed into a corner and told to choose between one form of suffering and another. It's not passion when you don't know what to do to have your life matter. It's not bravery when I'm told the fight will never end. It's just life or death. 4/
I'm tired of doctors positioning my will to survive as bravery/courage/drive. I just want access to care. I just want to work. Do you know how fucked your life is to have your #1 goal be "I want to be well enough to work"? But that's all I want. 5/
I like my work. I don't want to have to give it up bc my Drs failed me. Clinging onto it gives me strength and hope. I get to study how disabled people survived in a eugenics driven world every day. Their stories are mine. 6/
But their strength? My strength? Is not an excuse for inadequate medical care. Just because I'm "holding on" doesn't mean anything. Please stop using praise to discount the fact that my life could be so much better, if I only had proper care. 7/
