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The First To Discuss Long Covid in America



A year ago today I spoke about #longcovid publicly (when the pandemic wasn’t even a month old, recovery was still “2 weeks”, and symptoms were only believed to be respiratory), and it was my first time ever speaking to the media.


I desperately wanted to connect with other patients (coincidentally, the @wearebodypolitic support group was birthed this exact day by Fi and Sabrina!), spark their interest in also coming forward with their experiences (I knew I wasn’t the only #longhauler and that if I spoke up, others might as well) and I wanted to stress the varied negative experiences us patients were having with the medical establishment and the public.


I thought that if I was vulnerable and shared, people would believe me: they’d see my heart and honesty and realize how much we needed to take precautions seriously to stop the spread.


But few did. This article was lost in the void of the Internet, lost in the sands of time, and for the ones that did see it, saw a young female pleading about the difficulties of being a patient and let #sexism take the wheel and labeled me and my words as attention-seeking or exaggerated. I was harassed and still am daily for it.


And I think the hardest thing to take is the lack of respect for the sacrifices made. Peace, rest, privacy. Health. Mental and physical. No one helped me advocate. Only 1 friend said “let me elevate your voice as a patient”. Instead, they watched and waited to see how I’d recover (or wouldn’t).


There were warm well wishes and a few friends were right there alongside me asking how to help, but most just watched (#used) so they could ease their anxieties about instant death should they contract Covid.


So while I’m proud of myself for honoring what I knew was right, I’m not proud of what transpired after.


Silence. More cases and deaths. More long haulers. No one *really* caring about what I was trying to do.


Just a zoo animal in a cage that people would stop and look at and then move on.


And I hate that we’re now at a point where we’re FORCED to not move on because millions are now in my shoes.


If only people understood then that this zoo animal was trying to save them from being in her cage.