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.

Looks like @SocialSecurity sent a 2nd check by MAIL to my home address. I never got the first. Why the $$$ can’t just be deposited into my bank account is beyond me. My brain is melting each time I talk to another agent. #badcustomerservice #DisabilityTwitter I’ve called EVERY number I have. No one seems to be able to help me get $$$ I’m owed & worked for. If this is what #LongCovid patients have to endure in the next few years, God help us all. @SocialSecurity #DisabilityTwitter #badcustomerservice #Government

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.

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

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.

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.