In the worst seasons of sickness, I went silent. Unable to draw the names of loved ones or my doctors out of the magic hat of my mind; unable to assemble the breath to sustain a sentence. Attempts to communicate with the outside world shook the closed captions of my brain, words swapped shifts, a glitching vocabulary vending machine spitting misspelled homonyms. I stopped answering the phone, canceled all non-vital appointments, and gave up miscommunicating my condition to an audience that could not compute it without my translation. Somedays, I removed words from my environment altogether, listening only to
Being on the receiving end of abusive carceral care for my multiple chronic conditions and severe ADRs to prescription medications makes this piece hit especially close to home. I still have dreams that I'm dying, and no one around me notices. My doctors gaslit me during drug-induced psychosis, metabolic acidosis, and even sepsis. I can never defend our profit-driven, patient-forsaken systems for the sake of civility.
I have very little formal medical record of my year with long covid because often seeking care in the worst bits would have involved harmful exposure to long hospital waits that might have taken weeks to recover from.
To add to that the loss of autonomy and agency you document here must have been harrowing.
Thank you so much for sharing it. I'm so sorry you had to live it. X
I wish that every provider, every first responder, every employer would read this post. It reflects the types of experience that Long COVID can inflict and how they may be complicit in making matters worse. And it doesn't miss a beat in laying bare the dismissal of women's credibility in the eyes of many of the aforementioned.
Being on the receiving end of abusive carceral care for my multiple chronic conditions and severe ADRs to prescription medications makes this piece hit especially close to home. I still have dreams that I'm dying, and no one around me notices. My doctors gaslit me during drug-induced psychosis, metabolic acidosis, and even sepsis. I can never defend our profit-driven, patient-forsaken systems for the sake of civility.
Bloody hell.
I have very little formal medical record of my year with long covid because often seeking care in the worst bits would have involved harmful exposure to long hospital waits that might have taken weeks to recover from.
To add to that the loss of autonomy and agency you document here must have been harrowing.
Thank you so much for sharing it. I'm so sorry you had to live it. X
Years not year...!
What are the magic words to unlock the doors to specialists & referrals?
Beautifully written. I'm so sorry you were forcibly removed from your home by the police, what madness xx
I wish that every provider, every first responder, every employer would read this post. It reflects the types of experience that Long COVID can inflict and how they may be complicit in making matters worse. And it doesn't miss a beat in laying bare the dismissal of women's credibility in the eyes of many of the aforementioned.
Oooof this was so powerful. I have so much I want to say but it all boils down to just immense gratitude for sharing, ‘me too’, and virtual hug