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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& #39;re so driven to keep doing this despite being so sick." 1/
Nah. I& #39;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& #39;s not about mental fortitude, it& #39;s about survival. 2/
Without a job I can& #39;t afford medical care. Some specialists in #EhlersDanlosSyndrome don& #39;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& #39;s not fortitude when you& #39;re backed into a corner and told to choose between one form of suffering and another. It& #39;s not passion when you don& #39;t know what to do to have your life matter. It& #39;s not bravery when I& #39;m told the fight will never end. It& #39;s just life or death. 4/
I& #39;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& #39;s all I want. 5/
I like my work. I don& #39;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/
