COVID-19 Support Group: Long-Haul COVID
Welcome to the Body Politic COVID-19 Support Group newsletter. Open to all, this newsletter, spearheaded by group admin, Lisa Thomas, and supported by the groups’ other admins, seeks to provide healthy allies, medical professionals, and other interested parties with information on the support group.
A list of the physical ailments experienced by Covid-19 survivors could fill several pages - and one Body Politic support group member is developing just such a list here! Many symptoms widely reported within the Body Politic Covid-19 support group are still largely overlooked by doctors and by the media. These include (but are by no means limited to) fevers that last for months, impaired short-term memory, poor proprioception (sense of body movement and position), brain fog, heat intolerance, orthostatic intolerance (difficulty standing), dramatic changes to blood pressure and heart rate, muscle pain, menstrual changes, tinnitus, persistent nausea, weight-loss, hair-loss, and newfound food sensitivities. As overwhelming as an exhaustive list of these symptoms is, COVID-19 impacts far more than just the physical body. Long-haulers—those who have been sick for a month or more—experience the impact of Covid-19 in nearly every aspect of their lives.
Long-term illness alters relationships, shrouds the future in uncertainty, and in too many cases, creates devastating economic hardship. Morgan, a support group member who worked in tech prior to becoming ill, reports that after over four months of illness, she still struggles with a host of debilitating neurological symptoms, including the inability to add simple numbers. She writes:
“I’m incapable of sustained thinking, which for me means I’m incapable of working. . . . Demanding that my brain perform at this point could slow my recovery or leave me with limited capabilities. I have always been a knowledge worker, so thinking about that outcome is frightening.”
This fear is not an abstract monster. It is a concrete, rock-bottom reality for Morgan and many others. Morgan received short-term disability, but her insurance provider has since cut off these benefits. She now relies on CARES unemployment, but worries about whether she will be well enough to return to work when it expires at the end of the year. Morgan’s experience with COVID-19 has changed not only her health, her finances, and her career prospects, but also impacted her politically:
“This experience has opened up a lot of thought for me about how our current system is set up. I believe more than ever in basic human rights to food, shelter, and healthcare. The experience has radicalized me. A lot needs to change.”
Other support group members report being laid off, fired due to their inability to work, or are having to turn down appealing job offers because of their myriad lingering symptoms. Some have resorted to working part-time, but worry about their ability to live off of this limited income for months or years to come. Many members, including healthcare workers, suspect that they contracted the virus while on the job. In quite a few of these cases, eligibility for workers comp is thwarted by false negative test results.
Patients who lack a positive Covid-19 test result often face an array of barriers. Despite the fact that Covid-19 diagnostic tests still lack reliability and can be difficult to access, many insurers refuse to cover ER visits, lab work, and imaging in the absence of a positive swab. State or insurer-based decisions to waive deductibles for Covid-19 treatment do not apply to patients who receive false negative test results. Doctors are often unwilling to treat patients who didn’t test positive for the virus, and patients also face disbelief from employers and friends.
The irony is cruel. Those who are unable to access timely testing are far less likely to obtain a positive test result, even while sick with Covid-19. This lack of immediate access to testing snowballs into further issues: lack of access to paid sick leave, lack of access to workers comp and disability benefits, and lack of access to affordable treatment. All too often, lack of access to affordable treatment prevents patients from seeking treatment at all. Fatigue, brain fog, and other symptoms can also make it difficult for patients to advocate for themselves.
The difficult decisions that individual members face in managing financial barriers are now mirrored by a challenge confronting the admins of the Body Politic Covid-19 support group. Since late March, our group has operated through the Slack app. Slack’s option for multiple channels creates a platform in which our 8,000+ members can draw on the full wisdom and experiences offered by group members, while also enjoying the intimacy of smaller, more targeted conversations. In two months, our free subscription with Slack will expire. This expiration comes with a hefty price tag: over $300,000 per year, given our current membership numbers. And this number only grows as new members seek support. In addition to navigating our own health challenges, moderating the support group, engaging in outreach and advocacy, and setting up educational events for our members, our team of volunteers is weighing options for how best to sustain the support group in light of this significant financial obstacle. More than ever, we need your support! We encourage you to donate here and to share this campaign within your circle. Only through the generosity of donors and allies like you will we be able to continue offering the same level of support to the thousands of members who rely on the Body Politic Covid-19 Support Group.
