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.
It would be silly of me to act as if I’m not maneuvering thru some form of double consciousness as a black woman wading through the channels of what the media is seemingly painting as a “white woman’s disease.” #longcovid#covid19#blackpeople#chronicillness
I’m not interested in being in spaces where I can’t talk about race; where I have to pretend I’m colorless in order to get media connections or opportunities to spread awareness. #longcovid19#covid19#chronicillness
So I get why I make some support groups uncomfortable. It’s because I don’t belong there. I would muddy up their “image.” But I am black. And I have #covid19. And I’ve had white men call me “aggressive” while treating me. I can’t lie about that.
& for real for real, @itsbodypolitic is one of the ONLY groups that has ever made me feel good being me while having this stupid ass virus. & no, they don’t pay me. #longcovid#covid19#chronicillness
I just never had to shuck & jive to be there. And they actually address the many -isms we face while we wait & see where #covid19 will take us. I’m empowered by this group. Oh, I like Long Hauler Fighters too. #longcovid#covid19#chronicillness#blackpeople
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I’ve trying to keep my emotions in check but sometimes I look at the fact that after four years, there has been no real inclusion of more Black people into many #LongCovid or #MECFS spaces. And I get angry.
The hearing was deemed a success. Ang killed it.
But the fact that we haven’t found ways to include Black women/ppl into spaces to join the fight or stepped aside so that more of them can be invited to tell their stories at hearings makes me sad, angry + confused.
The hearing reflected an imbalanced view of who suffers.
But it was deemed a “success.”
What made it successful?
Success to me is when a racially diverse, imperfect, + eclectic group of people get together to send a message.
The actual state of #LongCovid in the US was not fully reflected at the hearing.
Looks like @SocialSecurity sent a 2nd check by MAIL to my home address. I never got the first. Why the $$$ can’t just be deposited into my bank account is beyond me. My brain is melting each time I talk to another agent. #badcustomerservice#DisabilityTwitter
I’ve spoken to so many Black people who told me their #LongCovid stories by accident. We’ve been keeping it a secret — like we do w/cancer & reproductive issues — but what we often know is that our health concerns are often tossed in a “white room” —
Sound-proof, hollow, with no one to rescue us. I’ve learned about #LongCovid memory issues, migraines, speech impediments, heart problems, & joint pain all by first telling my story. Imagine if I had stayed in a white room, no one would even know I existed.
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.
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
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.