Calling All Allies

In March, Body Politic launched the COVID-19 Support Group. Since then, we’ve watched the group grow in both numbers and mission. What started as a group for emotional support has transformed into a one-stop-shop for all COVID-related patient resources and a headquarters for the emerging patient advocacy movement. It’s been inspiring to watch patients gather together and fight for visibility, research, and more equitable access to care. What’s even more incredible is that these patients are working daily, and diligently, despite debilitating symptoms. While it’s crucial to center the voices of patients, the COVID patient advocacy movement needs the support of those who are uninfected or have recovered. Body Politic support group admin and long-COVID patient Lauren Nichols explained this phenomenon well in a recent Atlantic article on our group: “A lot of people who don’t have the energy to educate the world right now are educating the world.”

We asked COVID-19 patients and members of the Body Politic Support Group how allies can help. Here are 6 actionable ways to get involved: 

1. The first step is education.

COVID-19 patients are fighting for visibility. The mainstream narrative of COVID is somewhat one-dimensional and often does not account for the diversity of patient experiences. Reporting on COVID patients often fails to center BIPOC patients, despite the disproportionate impact of the virus on Latinx, Black, and Indigenous communities. Some media outlets also refuse to interview patients who have not tested positive for the virus, despite the fact that both PCR and antibody testing remains inaccessible to some, and unreliable. Stories on COVID are now starting to focus on long-haul patients - those who remain sick for more than a month - but there is still a lack of widespread information on long-haulers and the physical, mental, and financial issues they face. Most people who are not a part of the COVID patient community lack knowledge on the patient experience, which is why the first step of allyship needs to be education. 

• Read Ed Yong’s articles on long-haul COVID in The Atlantic and the ways long-haul patients are organizing together. 

• Check out this piece on pregnant Latinx COVID patients. 

• Read this tweet thread from Body Politic Support Group member Chimére L. Smith on the lack of Black women’s voices in the long-haul COVID conversation and reporting on the subject. 

• Google “COVID” and “disability,” and read this piece from Body Politic Support Group member Heather Hogan on their experience being diagnosed with a disability after COVID.

• Understand that COVID patients often face both physical and social isolation - check out my piece in Teen Vogue on this topic. 

2. Start conversations. 

Now that you’ve educated yourself on some of the issues facing COVID patients and the diverse range of patient experiences, it’s time to start spreading the news. The next time you’re chatting with friends and family about the pandemic, share something new you’ve learned about COVID patients and their diverse and immediate needs. Explain that there are patients who remain sick for months after their initial symptom onset, and that some are developing permanent chronic conditions and disabilities. Start conversations about what might happen to these patients when the pandemic is "over." To better understand the historical context for patients who remain ill after viral infections, watch award-winning documentary Unrest, which highlights the issues facing people with myalgic encephalomyelitis (ME/CFS), a complex chronic condition some COVID patients may end up being diagnosed with.

3. Donate to patient support groups, or volunteer your time.

The Body Politic COVID-19 Support Group is run entirely by volunteer administrators, most of whom are also COVID patients who are still battling symptoms. Our group is overstretched and needs funding and people power to continue. Donate to our GoFundMe here. You can also donate your time as a volunteer administrator, or by joining our Allies Support Network. Our Allies Support Network allows professionals with backgrounds in medicine, wellness, science, disability justice, and other relevant fields to hold “AMA” (Ask Me Anything) sessions in our Slack group. We are also always looking for pro bono support on the back-end from people in legal, accounting, tech, media, and PR. If you’re interested in volunteering as a group admin or providing back-end support, please email info@wearebodypolitic.com. 

4. Educate yourself about the disability benefit system in the U.S.

Some COVID patients are having to navigate the disability benefits system for the first time right now. The disability benefit system in this country is highly inadequate, and it’s very difficult to be approved for it. As support group admin Alison Sbrana has pointed out, “When folks were complaining that a $1200 stimulus check wasn’t enough to live off of, the disability community was over here getting $780-$1000/month saying, yeah, tell me about it.” Alison has lived with ME for six years. Alison believes that long term, we need to encourage our government representatives to support Social Security and eventually to reform Social Security Disability to support people with disabilities. In the meantime we need the government to include COVID survivors or additional disability benefits as part of the next pandemic relief package. She suggests reading this article in The Atlantic and this piece in PubMed Central that discuss the disability benefits system in greater detail. You can also check out a piece I wrote for Vox this spring about patients who experience symptom relapse, and the barriers these patients face when trying to return to work.

5. Hold your employer accountable. 

If you are in a position to do so, share resources on long-haul COVID patients and testing reliability issues with your employer. This might take the form of mentioning an article you recently read, while making small talk before a meeting. If you are in a position to suggest amendments to sick leave policies, do so.

6. Continue to check in with friends who are patients.

Check in with your friends who have had COVID-19, or are currently dealing with COVID symptoms. Remember that recovery is often not linear, and that many patients experience long-term mental health and financial issues long after physical symptoms subside. Be compassionate, and remember that while it may feel tiresome to support a sick friend, it is even more tiresome to be that sick friend. Read this piece I co-authored with support group co-founder Sabrina Bleich on how to support a friend with COVID-19. 

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Fiona Lowenstein (they/she) is a writer, TV producer, speaker, and media consultant. They are the founder of Body Politic and the co-founder of the Body Politic support group. You can follow them on Twitter and Instagram @fi_lowenstein, and check out more of their work here.