March 15, this past Sunday, was Long COVID Awareness Day.
I’d like to have published an article that day, or gone to a protest, or joined fellow patients at one of the various events taking place in honor of the occasion (shoutout as always to the excellent Sick Times). But I was too ill, as I often am.
I am homebound, only occasionally leaving my apartment with difficulty for medical appointments, and my welfare at home varies. On good days, I can read and write and spend time with friends. On bad days, I “crash,” am beset with migraines, I wait for the storm to pass. I take my medications. I am a reluctant convert to audiobooks. I cover my eyes with satin and silk. Little luxuries. I cry.
How to raise awareness for this disease that makes us so tired, so weak, and so small? I have tried so long to be loud, but who can hear me here, alone in this apartment?
On Long COVID Awareness Day, I posted a few tweets about my life, my experiences, yet felt so far away from the world. It felt perfunctory, hopeless. Is it possible to speak about Long COVID without having others speak over you? Without having people flood in to insist you are not ill, or that you are ill from the vaccines, or that your experiences haven’t happened, or that your suffering is unfortunate, but necessary?







