Guest Feature from Fiona Lowenstein: Chronic Illness Communities on Vaccines

The following essay is a guest feature from our friend, journalist Fiona Lowenstein. Fiona is the founder of Body Politic, a grassroots health justice organization for individuals with Long Covid. In this three-part series, Fiona details conversations with and insights from members of the chronic illness community, which often deals with additional layers of complexity when making decisions that affect their health — such as getting certain vaccines. 

Vaccine Decisions: Results from a You + ME Registry Survey

When Jasmine Heyer, 32, found out that Covid-19 vaccines would soon be available, her first response was relief. Heyer has had Long Covid since May 2020, so she understands how serious a Covid-19 infection can be. But, Heyer also knows that Long Covid patients’ reactions to the vaccine have been varied. A survey from the You + ME Registry found that for people with Long Covid, health is about as likely to worsen as it is to improve after vaccination – 28% said their health had gotten worse after vaccination and 30% said their health had improved.

Heyer’s doctors still aren’t sure what was causing some of her symptoms, and they haven’t had enough information about the vaccine’s effect on Long Covid patients to advise her on whether or not to get the vaccine. In the absence of information, Heyer decided to wait. “My decision not to get vaccinated has been profoundly hard to make,” she explained. “On one hand, I’ll do everything that I can to avoid a reinfection, but on another hand, I’ll do everything that I can to avoid any kind of setback.”

When I set out to write about how Long Covid patients and people with ME/CFS have navigated the decision to get vaccinated, I worried that telling these stories would further stigmatize chronically ill patients. Too often, any vaccination hesitation is equated with the anti-vax movement. While I believe that most people should get vaccinated against Covid-19, and that our current pandemic has proved that personal choice should generally not trump collective public health, I know the decision to get vaccinated is complex for patients with illnesses that have not been adequately researched.

I also understood Heyer’s concerns on a personal level. As a Long Covid survivor myself, I had my own fears about getting vaccinated. I got sick during New York City’s first wave in March 2020, and my doctors were similarly flummoxed by my symptoms. I often turned to people with Long Covid, ME/CFS, and related illnesses for advice. Long Covid patients in my support group were reporting diverse reactions after the vaccine, and there were no studies I could use to better understand how the vaccine might affect me, since research on Long Covid was just beginning. 

On the night before my vaccine appointment in March 2021, I scrolled through the “vaccines” channel of my support group looking for information on what to expect. But, it was hard to extrapolate from the anecdotes. I wished there was data summarizing the group’s experiences. You+ME and Health Rising have provided just that, by conducting their own studies on vaccine reactions in people with Long Covid, ME/CFS and Fibromyalgia. These surveys will hopefully make decision-making easier for patients like Heyer, who feel there hasn’t been enough information available.

I decided to get both doses of the vaccine last spring. My fears of reinfection trumped my concerns about side-effects, and luckily for me, my reaction was mild. In the months since, I’ve thought a lot about the patients who weren’t able to do so, and the ways their choices may be perceived by others. Recently, Heyer saw a specialist who told her he respected her decision to remain unvaccinated, but that his goal was to improve her health so she could one day receive the shot. “It was a relief,” Heyer explained. “To know that he felt the same way as I did.”

Body Politic Founder Fiona Lowenstein captures conversations with and insights from members of the chronic illness community on vaccines in a video linked here.

Vaccine After-Effects

In the hours after my first Pfizer dose last spring, I opened my calendar and, giddy with excitement and nerves, marked the day I’d be able to reunite with family and friends I hadn’t seen in over a year. But, another part of me was anxious. What if the vaccine caused side-effects that catapulted me back into debilitating Long Covid symptoms? 

Luckily, my post-vaccine symptoms have been relatively mild: a sore and bruised arm, gastrointestinal discomfort, short bouts of fever, and a couple of days of headaches, brain fog and fatigue. But, this 72-hour parade of Long Covid “greatest hits” (as some of my long-hauler friends call it) can still feel traumatizing, especially when it triggers memories of illness.

Allison Guy, 36, had almost made it to the “vaccine finish line” when she caught Covid-19 in February, 2021. Her Long Covid symptoms that spring were debilitating, and she hoped the vaccine might help. But, after the first and second dose, Allison said she experienced “pure hell.” She had a fever for several days, followed by an intensification of all her other Long Covid symptoms – a profound lack of appetite, cognitive functioning issues, neuropathy, and fatigue. She said she feels somewhat traumatized by the experience. “That time period encompasses such physical and mental agony, I still think I’m recovering from it,” Allison said.

JD Davids, who has fibromyalgia and ME, among other complex chronic illnesses, was infected with Covid-19 twice. After his first Moderna dose, he experienced a fever and flu-like symptoms that he described as “the pits of despair.” After the fever broke, JD still felt ill – he was sweaty and his heart was racing. Two days later, he woke up feeling queasy. “I felt like I was on a ship in a storm,” he said. On his way to retrieve medication for his nausea, JD fainted and broke his ankle. “I really had a lot of aversion to the idea of getting a [second] mRNA shot,” he explained. He decided to get the Johnson & Johnson vaccine in the summer of 2021, instead, and reported minimal side-effects.

Both JD and Allison felt eventual relief. In fact, Allison said she felt a moment of intense improvement ten days after her second dose. “It was like this great big hand reached inside of my skull and switched on a light switch,” she explained. “All the words that had been backed up in my throat for months…came pouring out.” This surge of clarity was followed by a short downturn, but Allison says her health has improved since. Feeling more functional has made her more nervous about getting a third shot, however: “if I do the booster, am I going to go back to square one?”

When I asked JD about vaccine decisions and side-effects, he mentioned the uncertainty that characterizes the lives of so many with complex chronic illnesses; from trying a new medicine to eating a new food, it sometimes feels like every decision holds risk. 

We all each have one body, and this body is an entire world, an ecosystem of different factors. For many of us who have complex, chronic illnesses, a lot of stuff can go awry. We have to factor in little shreds of data...and the rest has to be intuition, our best guess.

The Flawed Vaccine Narrative

People with emerging and/or complex chronic illnesses are often ignored by mainstream media and medicine, but it’s been especially disheartening to see COVID news coverage erase the existence of these populations, since so many were disabled by SARS-CoV-2. Media coverage of the Covid-19 vaccines has similarly sidelined the experiences of disabled and chronically ill people, who often face greater barriers to accessing the vaccine, and sometimes experience more significant side-effects post-vaccine.

JD Davids, a long-time HIV/AIDS organizer who is living with several complex chronic illnesses, said public health messaging has made him feel “despairing, as someone who dabbles in journalism and as a health advocate.” I feel similarly, as a journalist who has been covering Covid-19 patient issues and Long Covid for the duration of the pandemic. In addition to the erasure of Long Covid and related illnesses, mainstream news coverage of the vaccine often ignores the workplace protections and paid leave many need in order to safely ride out vaccine after-effects. I had a relatively mild reaction to the Pfizer vaccine, but I still needed nearly a week to recover from my symptoms. Other Long Covid patients have reported needing much more time to manage their health after receiving the vaccine.

Most mainstream coverage that discusses the vaccine’s effects on Long Covid patients has focused on its potentially therapeutic effects. While this is an interesting and important phenomenon, it does not accurately reflect every patient’s experience. Allison Guy, a Long Covid patient, recalls feeling hopeful when she saw such news stories. “I remember…bursting into tears at the idea that I might get better,” she said. “Looking back, that seems…perhaps overly optimistic.” 

In my case, the vaccine improved many of my more debilitating symptoms, like the flu symptoms, GI issues, and migraines I encountered every month during my menstrual period. But, I am similarly concerned about overly optimistic news coverage, because I know recovery and improvement may not be possible for all. I fear that such stories may further stigmatize those who stay ill, as well as those who experience difficult side-effects after a vaccine. “I do think there’s hesitancy for people like me saying, I had a tricky time making a decision…or it set me back in my recovery time,” JD said. Last year, JD wrote a post highlighting the many nuances that are often ignored in conversations about the vaccine. 

Simplistic mainstream media narratives also gloss over the experiences of people who get vaccinated, despite significant fear and concern. “I don’t want to take a vaccine necessarily,” said Terri Wilder, ME activist and #MEAction New York co-leader. “If I lived in a world where we had an alternative, would I rather not get a shot and put something in my body that could trigger something? Yeah, of course.” Terri said she’s made many difficult decisions for her health – like spending money on out-of-network specialists and trying potentially risky treatments. Once her doctor recommended the vaccine, Terri decided it was a step she must take. “I’ve tried to do everything else in my life to stay alive,” she said. “Why would I not get the vaccine?”

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