NBC News reported on Sunday that support groups for Black long-COVID sufferers have formed after being ignored by their doctors and the healthcare system.
According to the Centers for Disease Control and Prevention, long-COVID symptoms include tiredness or fatigue, worsening of symptoms, fevers, difficulty breathing or shortness of breath, coughing, chest pain, heart palpitations, difficulty concentrating or brain fog, headaches, insomnia, dizziness, depression and anxiety.
Chimére L. Smith said that she was deemed “aggressive” for insisting to doctors that her headaches were COVID-related. The 40-year-old contracted a mild case of COVID in March of 2020 and expected it to pass in a few weeks. However, Smith constantly struggled with extreme fatigue, dry mouth, brain fog, diarrhea, and a sore throat. By April, she had lost 30 pounds. She also lost complete vision in her left eye and had pain in her spine. She said she contemplated suicide after visiting hospitals more than a dozen times.
“I would come in with notes of my symptoms and share these symptoms with these doctors and they would not hear me. They wouldn’t listen to me. They would treat me as if I was a child and I didn’t know my body,” said Smith. “I wanted to die because I could not eat. I could hardly drink. I couldn’t think. Everything that I knew about my life within those first two or three months had been destroyed.”
Smith then found a support group on Facebook called the BIPOC Women Long Covid ‘Long Hauler’ Support Group and has since learned how to be a better advocate for herself. The group was created by social epidemiologist Dr. Margot Gage Witvliet in of July 2020 after she struggled with long-COVID and even had a seizure as a result.
Witvliet, 40, also suffers from short-term memory loss, chronic pain and fatigue. She told NBC News that she was “infantilized” by doctors and accused of using drugs. She was also told to stop eating fried foods. When she went to one doctor with her white husband in tow, the doctor only addressed her husband. “I was not treated with dignity,” she said.
“I am the one who is a health expert with a PhD and I am not a child.”
“I wanted to be able to use the fact that I was a professor and a social epidemiologist to really help these women who were suffering,” said Witvliet. “So that’s what this group has done. And I’ve met some really phenomenal women, and we have lasting friendships in this group because we’re all unified by this trauma that’s happened to us.”
We have a long way to go, especially when policy makers try to fit #longCovid diagnosis into a box. We have to get over the fact that there is no objective test for #longCovid. Recovery will require a new way of thinking. Integrative medicine is key. @COVIDOversight @WhipClyburn
— Dr. Margot Gage Witvliet (@drgagewitvliet) July 19, 2022
Smith said that she is happy to have found an outlet with the group that is now family. “I am very proud to be a part of that group,” said Smith. “As a matter of fact, that group is where I now spend a lot of my time because we’ve become family because we all share the same experiences.”
Long-COVID is now considered a disability under the Americans with Disabilities Act. According to the CDC, post-COVID symptoms can last weeks, months or years.