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Finally found capacity to share with you all what’s been happening to me. There have been literal parasites eating my gut + entire body from the inside out, to the point where my brain and bones are breaking down forcing me to rely on walking devices for the first time in my life
I’ve been immunocompromised for years, but the acceleration of my body and mind breakdown this past year specifically just wasn’t making sense. Existing diagnoses vs. what was happening didn’t add up. Facing the severity of this took a lot of support, and *a lot* of intervention
It has taken so many appointments, so many tests, so many mental and physical breakdowns to make it to this point where I can even partially articulate what’s happening to me. This time a year ago I had no idea the disability journey I was on. And it really has been a journey
It is possible none of this was preventable. But here’s the thing. Through years of countless doctors appointments, antibiotics, other tests and treatments for my failing immune system, not one health professional, not a single one, ever looked at or even thought about my gut
It has been a relief (albeit painful and disgusting!) to peel back the layers on my chronic health issues and get some answers. But overall it has been mostly shocking, and horrifying, to find out and process this. And to think about how long it went untreated while I decayed
I visited so many doctors as I went more insane. So many different types, trainings, treatments, groups. No one (not a single fucking person anywhere!) was trained to ask questions about my gut. The first — and still only — people to suggest it is likely my gut were sex workers.
I can’t stress enough how impossible my progress would be without the input, care, and love of disabled and chronically ill sex working community members. They believed me, helped me eat, found drugs, banged on my door in the middle of the night when I wasn’t sure I’d see morning
It really is not hyperbole to say disabled and chronically ill sex workers saved my life. And continue to on a daily basis. They cared for me in ways I didn’t know possible. They taught me things about my body and survival *no one else* did. They are public health experts, angels
It really has been wild. If you have healthcare or access to testing — especially if you’re immunocompromised — get your gut checked out. I never in a million years would have thought to look into parasites or SIBO. Or think about leaky gut because of how long it went untreated
Sidenote: I’ve been waiting so long to make a joke about possibly having a parasite when I first saw the movie Parasite and now I finally can
