COVID-19 Support Group: Confronting the Emotional Challenges of Illness
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. Thank you for your patience in receiving this week's edition of the letter, as delivery got postponed due to technical difficulties. We should now be back to sending bi-weekly and truly appreciate your understanding!
It’s hardly surprising that illness brings emotional turbulence in its wake. Many COVID-19 long-haulers experience times in which this turbulence becomes acute. The ups and downs of illness, the shock of each new wave of symptoms, and the uncertainties surrounding both immunity and long-term health prognosis leave many of us struggling to maintain balance and hope. Our volunteer team of admins does its best to watch for signs of crisis among group members and to reach out with appropriate resources. More often than not, though, it is not the admins but the members who rise to the challenge of supporting one another—of shining the light of their own experiences into the thick darkness that long-haulers are compelled to confront.
Last week, we reached out to our members to ask how they navigate the fear, uncertainty, sadness, numbness, anger, and despair that are common features of the long-haul experience. Many responded with practical suggestions that others can try: breathing exercises, meditation, listening to soothing music, spending time in nature, limiting exposure to news and social media, journaling, watching funny movies, or listening to uplifting podcasts and audiobooks. Others offered their own personal stories of resilience. One member shared the following:
One of the things that I've found really scary is that even in moments where I believe I will get to some sort of stasis with this thing, I fear that I will never be well enough to return to my job. I work in theater in New York so am lucky that I probably have at least a year before this would really be a reality, but it can be incredibly demanding when I'm actually putting a show in (weeks of 14-hour days, sleep deprivation, etc.). There is no real way to do it and to pace oneself, get enough sleep, etc. I LOVE my job but I have started to imagine a world where I use a lot of the skills I have to pivot into a career where I can set my own hours and work from home. And I've actually gotten kind of excited about it - I have been researching computer programs I can teach myself and I feel like I've shifted the whole internal conversation. Work is a huge part of my identity that I've been mourning, but now it's shifted into an opportunity. And I think that's the big thing about this whole experience - how it can be an opportunity for growth and change.
This shifting of one’s internal conversation—this emphasis on discovering new opportunities rather than just bemoaning new limitations—is a common theme within the group. Elliott, a group member who describes herself as “a writer who dyed her hair bright blue after half of it fell out from COVID-19,” shared how she has discovered new opportunities within the very real limitations of illness:
I feel so limited because of pain, fatigue, and cognitive difficulties. But guess what? I've discovered embroidery, something I had the items for but had avoided for fear of not being good enough at it. I can stitch for hours listening to a crappy mystery audiobook and then be in awe over how beautiful the stitches are, even imperfect. There are opportunities to learn new skills as we fight to recover and heal, like meditating, which I'd rather have sat through dental work than done before. I'm building lots of new skills and finding new things I am learning to love. There are lots of gifts here! (I also remind myself, every day, that I almost died but did not! I didn't die. That makes me feel really strong and grateful.)
Some of us have taken up embroidery, others (including the author of this newsletter) have given themselves over to writing. Runners among us have become walkers or bird watchers. We have changed career plans, made new friends, learned to ask for support, reevaluated relationships, learned to be alone, and deepened our appreciation for life’s small gifts. The darkness, fear, and anxiety that long-haulers must wade through in this process are not symptoms of weakness; they are the raw materials of resilience.
Here are a few of the articles and resources that have inspired and informed us over the past few weeks:
I’ve been Sick for 100+ Days, and You’re Making Me Sad
Help the Pataxó Indigenous People in their fight against COVID-19
The Pataxó Indigenous people in Brazil ask for your help combating COVID-19. One of our group members, Leticia Soares, a Brazil native, is working on this campaign and shared it with us, in hopes that our readers may be willing to donate. As always, donations are optional, but much appreciated!
Warmly,
The Body Politic COVID-19 Support Group Admins
Fiona Lowenstein, co-founder
Sabrina Bleich, co-founder
Alison Sbrana, admin
Gina Assaf, admin, survey research team
Lauren Nichols, admin
Lida Rubanava, admin
Melanie Montano, admin
Helen Feng, admin
Angela Meriquez, admin
Clare Kenny, media admin
Lisa Thomas, admin, newsletter
For more info on the group, email info@wearebodypolitic.com
For media inquiries, email PR@wearebodypolitic.com
