NBC News reported Sunday that support groups for black people with long-term COVID have formed after being ignored by their doctors and the health care system.
According to the Centers for Disease Control and Prevention, long-lasting symptoms of COVID include fatigue or tiredness, worsening of symptoms, fever, difficulty breathing or shortness of breath, cough, chest pain, palpitations heart problems, difficulty concentrating or brain fog, headaches, insomnia, dizziness, depression and anxiety.
Chimera L. Smith said 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 2020 and expected to pass within 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 full vision in her left eye and had pain in her spine. She said she considered suicide after visiting hospitals more than a dozen times.
“I would come with notes of my symptoms and share those symptoms with these doctors and they wouldn’t hear me. They weren’t listening to me. They treated me like I was a kid and didn’t know my body,” Smith said. “I wanted to die because I couldn’t eat. I could barely drink. I couldn’t think. Everything I knew about my life in those first two or three months had been destroyed.
Smith then found a support group on Facebook called the BIPOC Women Long Covid Support Group ‘Long Hauler’ and has since learned to better defend herself. The group was created by social epidemiologist Dr Margot Gage Witvliet in July 2020 after battling a long COVID and even had a meltdown as a result.
Witvliet, 40, also suffers from short-term memory loss, chronic pain and fatigue. She told NBC News she was “infantilized” by doctors and accused of using drugs. She was also told to stop eating fried foods. When she went to see a doctor with her white husband in tow, the doctor only addressed her husband. “I was not treated with dignity,” she said.
“I’m the one who’s a health expert with a doctorate and I’m not a kid.”
“I wanted to be able to use the fact that I was a teacher and a social epidemiologist to really help these women who were suffering,” Witvliet said. “So that’s what this group did. And I’ve met some really phenomenal women, and we have lasting friendships in this band because we’re all united by this trauma that’s happened to us.
We have a long way to go, especially when policy makers try to adapt #longCovid diagnosis in a box. We have to overcome the fact that there is no objective criterion for #longCovid. Recovery will require a new way of thinking. Integrative medicine is essential. @COVIDOversight @WhipClyburn
— Dr. Margot Gage Witvliet (@drgagewitvliet) July 19, 2022
Smith said she was happy to have found an outlet with the group that is now a family. “I’m very proud to be part of this group,” Smith said. “In fact, this group is where I now spend a lot of time because we have become a 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 for weeks, months, or years.