one thing I find really really gutting about watching the conversation around long covid and the importance of having a documented positive test is knowing the stories of lyme disease and mold illness and what little difference that documentation actually makes.
like it is absolutely true that there is & will continue to be gatekeeping based on this documentation.
it is not true that documentation is the key to being taken truly seriously or receiving adequate support from people looking for every excuse to withhold support.
it is not true that documentation is the key to being taken truly seriously or receiving adequate support from people looking for every excuse to withhold support.
and on a personal level, I understand what it’s like to deeply want documentation that says “yes this person is sick, here’s why.”
but it turns out that’s not how healthcare works? you can have the most official paper in the world and still, many people will dismiss it.
but it turns out that’s not how healthcare works? you can have the most official paper in the world and still, many people will dismiss it.
not to mention, if long covid clinics keep pushing CBT & GET as primary recovery protocols, most people will be better off without treatment. which is depressing af, I know.
AND emphasis on test history (which again, I know the gatekeeping is very real) frequently creates gatekeeping *within* patient groups too, where some people with documentation turn on folks without it and imply that those folks are malingering.
here be dragons, tread carefully.
here be dragons, tread carefully.
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