NEW YORK, NY— On Day One, March 25, 2020, Hannah Davis couldn’t read a text message. “It wasn’t about anything complex—just trying to arrange a video call—but it was a few sentences longer than normal, and I couldn’t wrap my head around it. It was the end of the night so I thought I was tired, but an hour later I took my temperature and realized I had a fever,” she wrote in the Guardian. She later found out she had COVID-19. She started to realize she had to refresh her mind on basic things she’s done all her life, like how buses worked and how to use delivery services. She constantly forgot things, like people’s names and what medication she took. She even forgot stuff that happened a few minutes before. “Things that had been second nature before Covid became important to consciously think through” she wrote. She was experiencing symptoms of something that people didn’t know about yet. She had long COVID. In case you didn’t know, long COVID means exactly what it sounds like: long COVID. While COVID-19 usually lasts from a range of 2-14 days, long COVID can affect you with a range of symptoms that can last weeks or months. Symptoms can include brain fog, fatigue, headaches, dizziness, and shortness of breath. But Hannah Davis is not just another long COVID patient dealing with these symptoms; she became a long COVID researcher and advocate who helped to bring attention that long COVID is real and serious.
Hannah Davis’s journey began when she joined a COVID-19 support group called “Body Politic” on Slack, founded by Fiona Davis. She found out that many of the people there were going through the same experiences she was. Connecting online about their illness was a relief to a lot of people. Fiona Lowenstein interviewed Xi Bing Su, a long COVID patient. Xi Bing Su talked about how lonely she felt and embarrassed that she was taking longer to go back to work or do more things because she had long COVID. She felt “so seen, so relieved,” after hearing others were going through the same experience she was. But what about the people that didn’t know about the Slack group? The ones who felt confused about what they were feeling, what symptoms they were experiencing, and even going to the doctor and not getting a lot of help? A lot of people felt confused and had no help because at the beginning, a lot of doctors were dismissive about long COVID and the problem was not being discussed. This was happening to a lot of long COVID patients, like Crystal Williams. In Williams’ interview in STAT magazine, she talked about how she was not able to start getting her concerns addressed until seven months after her symptoms began. “Thousands of people with long Covid have struggled to receive medical care for their symptoms. Many have found that even if they’re able to see a doctor, it can be difficult to be heard, and the best treatments remain unclear,” according to the STAT article. And this problem can also be racial. In an article by Fiona Lowenstein, she interviewed Angela Vazquez, a long COVID patient who was being dismissed about her case. “I never got a positive infection test, so doctors have diagnosed me as an overly anxious, young, Brown woman, not someone still dealing with COVID-19.” Vazquez said.
In our interview, Davis highlighted how important it is for her patients to be heard, and for long COVID patients in general, to be heard. “To see just how many people have been affected by COVID in having these long, prolonged symptoms, I think that really motivates us because we know how hard it is to kind of be sick for so long. I would say that patients are our most important influence.”
Hannah Davis and her Slack group decided to take action. In my interview with Davis, we discussed her research process. “We thought it would be interesting to try to do research ourselves and see if we could find some of those answers earlier than other researchers and doctors were going to be able to.” Their first step (cue action music) was to make a survey, which started out on Google Forms. In the survey, they asked about 62 symptoms they collected from what people were saying in their support group, and members sent it out to other people experiencing long COVID. In only a few months, over 600 people had filled it in! “There were just so many people across all different fields who got sick,” said Davis. On May 11, 2020, Patient Led Research put out a report on the experiences of more than 600 patients with long recoveries. Long COVID wasn’t a small problem; it was a big one. “We found that Covid is not respiratory, but systemic, with symptoms spanning the gastrointestinal, neurological, respiratory, general immune and cardiovascular systems.” Davis said in the Guardian.
The news about long COVID was out.
Hannah Davis and her team proved that long COVID is real and important. Hannah Davis and her team taught people, and still teach people everywhere, an important lesson that all voices should be heard. Like all of the long COVID patients who felt alone, discouraged, ignored, and unimportant. But most importantly, they teach that anyone can do anything. Like going from looking at a text message to lighting the way for long COVID patients.