Covid-19 “long-haulers” find a community online

Some call themselves Covid-19 “long-haulers,” while others say they are “living with Covid-19.” Either way, more than 5,000 people have now found help and validation online, thanks to a support group that exists to get people through their symptoms — symptoms that, for reasons scientists have yet to establish, sometimes last months.

“I never imagined that it would grow this big,” Fiona Lowenstein, co-founder of the Body Politic Covid-19 support group who received a Covid-19 diagnosis in March, said during an interview for the Vox podcast Reset. “The first thing that became clear was that this experience of long recovery and lingering symptoms was very common, at least very common among the people joining our group.”

Initially started on Instagram, the support group now resides on Slack, the team communication service. One of the main benefits of the group is meeting others who’ve gone through similar experiences, Lowenstein said. Being able to have conversations with people who understand how hard recovery can be is especially important because a high proportion of members weren’t hospitalized and were told that their case was “mild.”

“While a low-grade fever may not seem like a severe symptom, if you have a low-grade fever for three or four weeks, that is a severe situation,” Lowenstein said. She started the group with her colleague Sabrina Bleich, who was also sick, after hearing from others like her who’d read an op-ed she wrote for the New York Times.

Now, in addition to offering patients the kind of support many need, these “long-haulers” have formed a research group that has been gathering information about members’ experiences with the disease, with the hope of informing the scientific community.

To find out more about the support group as well as potential reasons why some patients’ symptoms linger for so long, listen to the latest episode of Reset below.

Subscribe to Reset on Apple Podcasts, Google Podcasts, Spotify or wherever you listen to podcasts.

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