Fiona Lowenstein became sick with Covid-19 in early March. As a generally healthy 26-year-old, the writer and nonprofit founder didn’t initially think they had much to worry about. But they kept getting sicker.
Ultimately, they were sick for three months, which included time spent in the hospital receiving supplemental oxygen.
Very little was known about the virus back then. Lowenstein had no idea if their symptoms were normal. Their only saving grace was comparing what they were going through with a colleague who was also sick.
“We realized early on that this type of peer support from a patient was incredibly helpful emotionally,” they said, “But also just in terms of these kind of logistical questions.”
Lowenstein, who founded the queer feminist wellness collective, Body Politic, decided to write about their experience for the New York Times.
“I thought it was important that other young people realize that our role in this virus might not only be as allies, that we might also be in danger ourselves,” they said. “After that, I started hearing from dozens of Covid patients all over the world.”
Lowenstein discovered that Covid-19 patients were desperate to connect with one another.
“A lot of them had these emotional needs, wanting to have someone to check in with every morning, someone who could understand the intense anxiety that comes with thinking you might have Covid. But they also had really tangible questions. They wanted to know, how did you know to go to the hospital? What was it like? What did the nasal swab feel like?”
With the help of the Body Politic team, Lowenstein began to organize a Covid-19 patient support group, which began as an Instagram group chat. In the group, Lowenstein was learning a lot.
“I started to notice a lot of the people in the group chat had been sick since March, were young, did not have preexisting conditions, had had initially mild cases…But it was April and they were still not better…So I wrote a follow-up piece in the New York Times that as far as I can tell is one of the first reported cases of what we would now call long haul Covid…I linked to the support group sign up form, and we had over 2,000 people sign up overnight.”
To support its growing numbers, the support group was quickly moved to Slack. Over 18,000 people have since been active in the group, with over 8000 active members right now.
Lowenstein described the group as a robust small city, with between 60 and 70 channels of conversation.
“We have channels for every system of the body so people can discuss their symptoms in these specific groups…We also have channels based on geography, channels for every continent…We also have channels based on community, so we have an LGBTQ+ channel, a BIPOC channel. We also have a channel for medical professionals who are also patients.”
The group also has a channel called victories, which Lowenstein said for some patients is a crucial emblem of hope.
The group is run and moderated by a team of volunteers. It is private, has an extensive application process, and has become a lifeline to many, including Lowenstein.
“Knowing [long haul Covid] was truly an issue that thousands of people at the least were experiencing made me feel less alone in my recovery,” they said, “and I think that is the whole purpose of the support group, to help you feel like, no you’re not making this up. No, you’re not weird or freakish because this is happening to you. This is an experience lots of people are having, and our society is just not structured to make you feel validated.”
As the group has grown, it has come to provide far more than support.
“The group has become really a headquarters for the emerging Covid patient advocacy movement,” said Lowenstein. “We have a lot of grassroots initiatives that basically members of the group have spearheaded.”
The group’s patient-led research team, for example, is made up of patients with backgrounds in science, technology, medicine, and survey design. The team has been surveying patients to understand their various symptoms. With their findings, they have met with WHO, the NIH, and are also in regular conversation with the CDC.
“The ethos of the group in general is patient-centric research,” said Lowenstein, “So they try and address the questions that patients want answered, and unfortunately [those] are not always the same questions that are of highest priority to the medical or scientific establishment.”
Body Politic has also spearheaded a social media campaign, #VoicesOfTheVirus, to highlight the many diverse stories of Covid patients. They are also selling Covid patient ally t-shirts, with proceeds going to the support group, and they are planning to launch a patient allyship campaign soon.
Through everything, Lowenstein said the other patients have been the most important guides.
“If this is a group to serve patients, the only place we can get our cues from and the only way we can get our instructions on what to do is by listening to people and seeing what they need and what they like and what they don’t. It’s really due to the other patients that we managed to make this a success. Because they led the way.”