Until the point that every single medical evaluation for post-viral illness (including Long COVID and all other infection-associated illnesses) includes mandatory & routine screening for PEM, medical professionals will continue to do unimaginable harm to their patients
#MECFS even the passive ignorance around PEM, such that HCW’s are unable to screen for it or provide education about it to patients, is a form of medical neglect that has caused immense harm, and will continue to cause harm until our healthcare systems can catch up to the science

I know one of the reasons so many non-disabled people could care less about COVID is because they are truly under the false impression that there is a social safety net should they become disabled. So I’ll say it again, there isn’t one. If you become disabled you are on your own These are the people who say things like “what about SSI/SSDI?”And “surely doctors are aware of how to recognize and treat Long COVID by now?” And any disabled person can tell you how ludicrous those statements are. Good luck waiting YEARS for disability approval or medical care

Something I’ve foreseen since the beginning of the pandemic is that we’re gonna be seeing lots of newly disabled folks who are incredibly ableist and/or in complete denial about their disability status. These ppl can be incredibly laterally ableist for a few reasons 🧵 /1 When ppl become disabled they often don’t immediately identify that way. And whether these ppl had a temporary disability or have a permanent one, they can be in denial about this experience for years. I get it, it’s hard to comes to terms with. But they often then use this /2

I am constantly reminded how living with #MECFS is like being frozen in time. The world moves past us so quickly, people move in with their lives, and we’re stuck in a cruel and unforgiving stasis as we are slowly forgotten 1/? This illness warps time as much as it warps our body. Everything about my life has slowed to a halt. This is very literal in a way- I move slowly to prevent PEM and from the pain of my creaky joint & muscles. I am wrapped in stillness, resting & pacing & waiting 2/?

I have something I need to get off my chest re: masks as a disabled person. If I know you irl, and you don’t wear a mask around me or in that photo you post at a crowded event, I might not say anything, but believe me I notice 🧵 I’m not fond of calling people out or shaming them, but when you don’t wear a mask, believe me, I notice it. I might not say anything but I immediately mark you as an unsafe person in my mind, someone to stay away from, and not let close 2/

I wish more people talked about how chronic illness is it’s own form of complex trauma. And I’m not just talking about medical trauma & mistreatment although that’s part of it. I’m talking about the trauma of losing your health, passions, future, relationships, ability to work 1/ Chronic illness is traumatic. It means losing hope, losing yourself, losing economic stability, losing choice and agency. And yet this aspect of it is rarely mentioned. Much of the trauma from being sick is due to lack of societal supports as well 2/