Vaccines and Small Victories
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: In the past two weeks, we’ve seen an outpouring of emotion (and emotional support!) in the #vaccines channel. As has been previously mentioned in this newsletter, reports of Long COVID patients’ responses to vaccination have been varied, and our #vaccines channel continues to be a space for conversations about these diverse reactions. Many in the channel who have been scheduled for vaccines are now expressing fear about adverse side-effects, after reading about others’ experiences. Some also discuss the complex ways in which COVID-related traumas of the past year are impacting their anxieties about receiving the vaccine. It’s become common for members to post asking for encouragement and support from other users before they go in for their first dose. These posts are almost always met with an outpouring of support and love from fellow Long COVID patients who have already been vaccinated themselves.
#medical-advocacy: Patients continue to share advice on navigating complex healthcare systems and disbelieving clinicians. Some patients report on visits to Long COVID-specific clinics. Recently, one user described a positive experience at such a clinic, but expressed anxiety that their Primary Care Provider would not incorporate the clinic’s advice. Body Politic admin and board member Alison Sbrana had some suggestions:
“If your PCP sees the recommendation from [redacted] and chooses not to proceed, then it's time for a new PCP unfortunately. Try to get a case manager/care coordinator from your insurance on board to help you manage and streamline the referrals…. I had trouble being assertive in the doctor's office early in my illness. One thing that helped me navigate this is realizing that if I had a doctor who wasn't supporting me, I could choose after the appointment to not see them again and instead go see someone else.” – Alison Sbrana
*some names have been redacted to preserve patient privacy
#over-30-days-no-symptoms: In our new(ish) channel for people who have mostly recovered from Long COVID, users frequently express that despite an almost full return to health, they are not the same people they were before contracting COVID. Sometimes this presents as permanent changes to taste, smell, or menstrual cycles, and other times it manifests via emotional changes, lingering mental health issues, or even a transformed sense of self or identity. Some feel that despite the difficulties of being sick, they have gained a new perspective on disability and illness.
#victories: Finally, in the ever-popular channel on victories (both small and large), some members are celebrating new beginnings and being able to let go of the past – past fears, past goals, even past exes who keep on texting! Many of our group members are approaching their one year anniversary of contracting COVID, and it’s causing us all to reflect on how far we’ve come.
Advocacy Updates
Since January, Body Politic has been meeting more regularly with the Centers for Disease Control. We are staying in close contact about issues related to Long COVID patients and vaccines, new symptoms that are emerging in the support group and via research studies, and the multi-systemic ways in which COVID impacts patients’ lives.
In a White House press briefing last week, Dr. Anthony Fauci spoke about the NIH plan for funded research into Long COVID, and introduced the acronym “PASC” (post-acute sequelae of SARS-CoV-2 infection). Patients' reactions to this new name have been varied, as some feel Dr. Fauci was dismissive of the patient-preferred term “Long COVID.”
We are excited to announce that Body Politic has joined the Long COVID Alliance, launched by Solve ME/CFS. The Alliance is a network of patient-advocates, scientists, disease and public health experts, and drug developers, who have joined together to leverage our collective knowledge and resources to educate policy makers and accelerate research to transform our understanding of post-infectious illness.
In case you missed it, Body Politic shared a statement on Long COVID recoveries and controversial rehabilitation therapies for Long COVID and other related illnesses. Check it out here.
New on Body Type
Body Type is Body Politic’s mini publication, where we investigate the intersections of health, wellness, and social justice from a patient-centered lens.
Moderator Spotlight: Meet Kit!
Body Politic’s support group is run by a dedicated team of volunteer administrators and moderators, most of whom are patients in the group as well as providing administrative support.
Patient Spotlight: COVID has been really hard for BIPOC
Body Type contributor Delia Rogers interviewed Shanice Ariel on her experience with Long COVID...
“Nobody is talking about the reproductive symptoms. I have PCOS and it has begun to flare up because of my COVID symptoms. I have also become diabetic. I think the digestive issues need to be talked about more, because it has been really hard. I have always had stomach issues, but now it is ten times worse. I am hearing about the brain fog and the headaches and the fatigue, but I am not hearing about the rest of our bodies.”
Photo of Shanice Ariel by Elmer Quintero @elmzqphotos
In case you missed it...
Body Politic is in the news!
"COVID Long Haulers Needed a Place to Find Support And Answers - So I Created One On Slack"
Women’s Health
The Challenges of Getting Long-Covid Patients Back to Work
Wall Street Journal
What Diagnostic Odysseys Have in Common
Elemental
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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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