The Difference a Year Can Make
Artwork by Delia Rogers
Dispatches from the support group
Body Politic’s support group exists on Slack where conversations occur in over 70 different topic or community-based channels. See below for a peek at what we’ve been talking about lately...
#vaccines: Yes, we are still talking about vaccines (who isn’t?!). In the past two weeks, members of our support group have begun talking more about eligibility requirements. As people who need to leave home regularly to seek care and treatment, many Long COVID patients fear reinfection and are eager to be vaccinated. But Long COVID is not listed as a high-risk condition in any states’ vaccine eligibility requirements. That being said, Long COVID patients in our group are encouraging one another to reach out to doctors, as many of us have developed issues that may qualify us for vaccines. Users report getting notes from sympathetic primary care providers and specialists, and while this is an important win, it begs the question of how patients who have not been able to access comprehensive care will prove eligibility.
#legal-and-financial: In the channel for conversations about legal and financial issues, users continue to report struggles accessing disability benefits. Some are facing issues because providers have added notes to their charts indicating their symptoms are psychological – a common experience for Long COVID patients and other chronically ill populations. Others can’t figure out how to qualify because their work status is complicated; graduate students are reporting issues because of their designation as “students.” Users talk often about the immense difficulties of trying to navigate the disability benefits system while managing health issues.
#parents-and-children: Parents and people caring for infected children report difficulties accessing care at designated COVID centers, or securing a Long COVID diagnosis from clinicians. Parents who are themselves Long COVID patients have been expressing concerns about the return to school, and express fears about reinfection. Users in this channel agree that whether or not to send your children back to school is a very personal decision, and all choices should be respected.
#solo-riders: In our #solo-riders channel, patients living alone exchange tips on how to care for oneself while in total isolation. These messages often include advice on getting clear about priorities and relaxing standards for household and personal cleanliness in order to create more time for rest and pacing. “Just do the bare minimum for now,” one user recently wrote. “Your dog won’t tell on you if you don’t shower today.”
Advocacy Updates
Patients in our community have been reporting links between shingles and Long COVID for months. Last week, these awareness-raising efforts resulted in a published article on the issue.
The debate about Long COVID and graded exercise therapy (GET) continues, despite GET being previously discredited for patients with Post-exertional malaise (PEM) – a phenomenon many Long COVID patients say they’ve experienced.
Black Long COVID patients continue to be sidelined in mainstream media coverage of the illness and organizing efforts. This video from Body Politic member and COVID patient advocate Chimére L. Smith is a must-watch for anyone covering or organizing around Long COVID.
Long COVID clinics have been emerging around the world, but many feel they are failing patients by limiting admission to those who have received a positive COVID diagnostic test result. Even for patients who qualify, waitlists are extremely long. Some report being scheduled for appointments in 2022.
Social media update: #1year1virus
Many patients in our community are commemorating one year anniversaries of COVID symptom onsets. These “coronaversaries” are bringing up a lot of feelings, and Body Politic’s social media team has put together a campaign to amplify patient's voices through videos on what we’ve learned this year. We’re partnering with organizations and individuals to promote support group resources for those in need, and honor the complex occasion of reaching one year of the pandemic in the United States. See below for Body Politic Treasurer Lauren Nichol’s video on #1year1virus.
It’s been one hell of a year – many of us have struggled in silence for most of it – but we’re grateful for the communities that brought us together, and everything we have achieved in the past twelve months.
In case you missed it...
Body Politic is in the news!
“The pandemic anniversary: What we’ve learned about health care, science, and ourselves”
Katie Couric interviews a doctor, a researcher, and a patient
“Next Question” podcast
“Will vaccines protect us from ‘long-haul Covid?’ We need answers,”
by Fiona Lowenstein
The Guardian
"Long Covid isn't as unique as we thought"
The nagging symptoms long-haulers experience reveal a frustrating blind spot in medicine.
VOX
“I just don’t know how to get better”
Craig Melvin interviews Chimére L. Smith and Fiona Lowenstein
MSNBC
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Thanks for reading the Body Politic COVID-19 Support Group newsletter. Open to all, this newsletter seeks to provide COVID patient allies, healthcare professionals, journalists, and other interested parties with information on our COVID-19 Support Group. Because the group is currently only open to COVID patients, survivors, and their caregivers — a decision our team made to foster a culture of trust within the online community — many of the amazing insights the group provides have not been shared with the outside world. In this newsletter, we will give you a look inside this robust support group, by summarizing big discussion themes, sharing advocacy updates and links to articles our group found helpful, and including personal anecdotes from group members. Click here to get the newsletter sent directly to your inbox!
For more info on the group, email info@wearebodypolitic.com
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