I’m so upset — was just told that I don’t qualify for research because of what my medical records say. I can’t understand why researchers can’t correlate my neurological symptoms to #Covid and #LongCovid. This is how we make missteps in medicine.
I just want researchers to tell me how many black people they’ve been able to obtain for their #LongCovid studies because if we miss an opp to research ONE BLACK WOMAN who can share her experiences with OTHER BLACK PEOPLE, we once again miss the mark.
Because as far as I can see, there is little to no research about black people’s experiences with #LongCovid. First, it was I needed a +PCR test and now my medical records don’t support my neurological symptoms that arose because of #Covid.
We scream that we are trying to figure out ways to appeal to black people in research because we are often misrepresented. This is one of the reasons we don’t sign up for research. I fought to be considered without a +PCR. #longcovid
After everything I’ve experienced AFTER March 22, how could we not correlate these symptoms with #LongCovid? We are doing a disservice to black people who voluntarily want to be a part of research.
And ANOTHER thing: how many neurologists were actually believing that my blindness, occipital neuralgia, memory loss, cognitive impairment, etc. were #LongCovid-related in the early stages while I was trying to get docs to treat me?!
I want to be a part of research because it is imperative that we learn about how #Covid/#LongCovid affects the brain. But I also want to document my experience to share with other black ppl who may be considering doing the same.
Once again, we’ve found a way to marginalize the underrepresented & discount #LongCovid patients who’ve been screaming for help for a year & those with #MECFS who’ve needed help for years. This is another blow.

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More from @chiluvs1

7 Apr
Second Pfizer dose done. 👏🏾 #longcovid
Been wondering about delayed vaxx reactions. 1st dose: 3/13. I’ve been having a bout of increased inflammation and joint pain in my knees & lower body. Also experienced some tummy issues over the last two weeks. #longcovid
Surprisingly, my brain fog has decreased. #longcovid #vaccinations #vaxxed
Read 4 tweets
13 Sep 20
We have to be really careful of #Covid19 support groups that claim to be inclusive but don’t want to talk about the racial disparities in healthcare or statistics that clearly state who this virus affects most. #longcovid
If I can’t have a discussion about being a black woman struggling with this virus and the racism that while seeking treatment in a #Covid19 support group, I don’t want it.
Having this virus isn’t a public relations job for me. This is real. It affects me every single day. #longcovid #covid19 #blackpeople #chronicillness
Read 8 tweets
23 Aug 20
Is anyone else afraid of the lack of black women voices in #longcovid conversations? If anyone knows how challenging it is to be heard by doctors, it’s us. From fibroids to infertility to cancers to endometriosis, we already have lived being disbelieved.
Prior to having #longcovid, I had been privileged in a sense. I had never had a health condition that wasn’t believed by medical professionals. But babyyy, since contracting #covid19, I’ve learned and lived this nightmare for five months.
You can’t be a smart, black woman while describing symptoms and challenges of #longcovid. It is NOT allowed. During a recent hospital stay, I argued with a doctor who told me that #covid19 didn’t cause neurological problems. He didn’t want to hear me.
Read 11 tweets

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