High-Risk Vaccine Hesitancy
At this time last year, I didn’t know what to do about the flu vaccine. We were already in the thick of the pandemic: grieving the disproportionate loss of disabled people in congregate care facilities, listening to friends and high-profile strangers express their relief that the only people dying from this virus were people with preexisting conditions, and watching as the devastation of long covid was met with the kind of denial from doctors that has defined post-viral illness for decades.
My health was in complete chaos because my illness was flaring for reasons I was still trying to piece together. I’d been living with diagnosed postural orthostatic tachycardia syndrome (POTS) for years, so I was used to my nervous system becoming suddenly dysregulated when I was vertical, but this was different. I could walk short distances with my cane but I couldn’t sit or stand still for more than a minute or two without a complete system collapse. I spent most of my time in bed and I didn’t have the cognitive capacity for more than maybe 30 minutes of tv a few times a week. I read Twitter on my phone in dark mode and I read romance novels on my e-reader, grateful that these escapes were a little less painful than other types of sensory input.
I had three problems when it came to the flu vaccine: I didn’t know how to access the shot; I didn’t know how to evaluate if the shot was safe for me; and I did know that I couldn’t risk catching the flu in the middle of a pandemic.
I also knew that my symptoms were consistent with myalgic encephalomyelitis (ME), a historically under-researched neurological condition with few treatment options that affects tens of millions of people worldwide. The most important thing to know if you think you might have ME is that this condition can be permanently exacerbated by exertion. There was no way that I could safely walk or sit in a transfer chair for the time required to get from our car to a vaccination site.
And even if I could access the vaccine, how would I know if it was safe for me? The last time I’d been this sick it turned out to be a reaction to a type of mold called chaetomium in the walls of my apartment. This time I’d ruled out mold and didn’t know where to find the culprit. We were looking into an immune condition called mast cell activation syndrome (MCAS) as an explanation for my symptoms because it’s so commonly comorbid with the diagnoses I’d already received.
People living with mast cell diseases experience a sort of functional allergy to highly individual, diverse and fluctuating inputs. There are people with MCAS who have histamine reactions to water, to sunlight, to their own sweat, to their emotional state. It’s important to remember that while none of these things are inherently dangerous to the average person, they can be life-threatening to somebody with MCAS. There are people with MCAS who need to get all of their medications compounded independently because they react to the fillers in the medications they rely on to survive. And more to the point, there are people with MCAS who react to the standard flu vaccine because it contains traces of egg, which can be an MCAS trigger. Egg-free alternatives do exist, but you need to know that you need them in order to try and access them.
I knew the flu vaccine was safe for most people. I’d gotten my flu vaccine the year before, when my health was more stable and getting to the clinic in the high school gym from the car was no problem. I just didn’t yet know what was triggering my current illness flare, so I had no way to know if the vaccine would make things significantly worse than they already were.
I also knew that viral infections can be a major MCAS trigger. Even as I was worried that the flu vaccine might have long-term impacts on my health, I was quite certain the flu itself would decimate me in my reactive state. And it wasn’t just the risk of the flu, it was also the risk of covid exposure if I needed medical care for the flu and the reality that if a covid outbreak occurred near me, there may not be ICU beds available for flu patients.
Routine healthcare for disabled people has been heavily disrupted and sometimes cut off completely because of the pandemic. Early on, telehealth access was broadly expanded, but access to telehealth has been gradually revoked in some states. Multiply marginalized disabled folks have felt these changes keenly, because it was already mostly impossible to find an anti-racist, gender-affirming doctor who’s informed about how racism and transmisia (and many other biases) impact quality of care and also takes your insurance. Now you need to screen doctor’s offices for whether or not they are taking pandemic precautions and accommodations seriously too. Existing faults in the healthcare system have been amplified, leaving people of color in the US more likely to die from covid than their white peers. And like I said at the beginning, many disabled people who live in nursing homes have been dying at much higher rates than the general public, and incarcerated people face similar systemic abandonment.
And while a lot of non-disabled white people were doing their best to ignore covid mortality rates, they also seemed to be completely unaware of the morbidity risk. A majority of ME cases are known to be post-viral, and early data suggested that covid had a high morbidity rate. A lot of people, women in particular, were not recovering from covid at all. It all felt very familiar for those of us in chronic illness communities, and indeed this intersection of ME, MCAS, and long covid is an area of active research.
Chronic illness communities are full of people like me. People who are still looking for the explanation for painful or energy-limiting symptoms so that they can make informed decisions about their health. It’s typical to wait years or decades for a chronic illness diagnosis because of systemic disbelief and a wide range of medical biases. With limited help from doctors, many people turn to online patient groups for support and advice.
Even before the pandemic began, these groups tended to attract a lot of misinformation, from wellness zealots who are convinced that a single lifestyle intervention will cure everyone to conspiracy theorists who are convinced that one single component of modern life is the source of all illness. For the most part volunteer moderators do their best to keep multi-level marketing promotions and anti-vax rhetoric to a minimum, but the work is relentless. Some groups have strict rules banning any kind of advice-giving, accompanied by the recommendation that people take these questions to their doctors. You can see how this might create a bit of an information vacuum for very sick people who don’t have access to a doctor that they trust.
It can be incredibly difficult to talk about vaccine hesitancy under these conditions because the people most eager to talk about adverse vaccine side effects are often anti-vaxxers, a large and loosely connected group of people who tend to believe that the impacts of the virus are vastly overstated while the impacts of vaccines are intentionally understated. Many contemporary anti-vaxxers are heavily informed by the discredited and retracted work of Andrew Wakefield, who made the much-repeated claim that the MMR vaccine causes autism (and just to be extra clear: the MMR vaccine and vaccines in general do not cause autism). The implication that it’s better to die from a preventable disease than to live as an autistic person is, by the way, a boldly ableist and eugenicist take.
Public health educators and enthusiasts tend to overcorrect for anti-vax rhetoric, by doing things like gleefully tweeting vaccine safety stats for the general public and implying that anybody who’s concerned about the extremely low risks of anaphylaxis or blood clots, for example, must be anti-science. This is not reassuring for people who have already lived through more than a typical lifetime’s worth of medically improbable events. It can feel eerily similar to the comfort some people take from hearing that somebody who died from covid was already disabled. The suggestion that serious vaccine side effects are so rare that they don’t happen to real people is, well, pretty dehumanizing. And it’s uncomfortably familiar for people whose doctors have previously refused to acknowledge pharmaceutical side effects or diagnose their criteria-meeting rare disease symptoms on the basis that “it’s too rare.”
Similarly, a lot of people were overselling vaccines as a way for pro-science individuals to leave the restrictions of the pandemic behind. People were encouraged to get vaccinated so that they could have a so-called normal summer, and the CDC (somewhat controversially) released a recommendation this past spring that fully vaccinated people didn’t need to wear masks in public.
It’s worth it to pause for a minute here to talk about how vaccines work and why we rely on vaccination for public health. Not all vaccines are identical, of course, but most vaccines work by exposing your immune system to an inactive version of a given pathogen so that your immune system learns to recognize and rapidly respond to that pathogen. On the individual level, you get vaccinated to reduce both your overall risk of infection and your chances of hospitalization due to severe illness.
But! Vaccines don’t just work on the individual level because not all individuals respond exactly the same. Not every immune system mounts a sufficient response, not every immune system can tolerate the disruption of mounting a response, and some people face insurmountable access and cost barriers, even though the vaccine itself is free. And as the highly contagious delta variant spreads in communities across the country (and world), children under 12 are almost universally unvaccinated.
When you’re too young or sick to benefit directly from a vaccine, you have to rely on the people around you to protect you from exposure. That means mask mandates, distancing, and yes, vaccine mandates so that there are fewer overall hosts spreading the virus. On the community level, you get vaccinated to reduce both the risk that you will infect somebody else with a virus they may not survive and the likelihood that the virus will mutate in such a way that current vaccines lose their efficacy, which would further devastate our communities. Even for an adult with a healthy immune system, the benefits of vaccination will depreciate very quickly if most of the people around you aren’t vaccinated.
It is because some people can’t safely get vaccinated that it is so essential for everyone else to do so. High-risk people have been trying to survive this pandemic in isolation, and as essential workers, and with varying degrees of control over the precautions taken by the people in their living spaces. They have needed workplace and school accommodations in order to protect themselves, just as people who can’t safely get vaccinated will need remote access options and other accommodations until community spread is controlled. All of these protective measures require a level of institutional support that has been repeatedly withheld and withdrawn over the course of the pandemic as far too many decision-makers have relied on wishful thinking to will the institutions they lead into an unsafe approximation of pre-covid normality.
In the end, I was able to get the flu vaccine last year. My health had begun to stabilize by the time my town offered a drive-thru clinic that was uniquely accessible to me (although needing a car is itself an access barrier for many people) and so I was less worried about my body responding in a destructive and chaotic way. If you related to my descriptions of intense orthostatic intolerance at the beginning of this essay, I’d encourage you to learn more about CSF leaks and other spine-related complications associated with connective tissue disorders. By the time the covid vaccine became available to the general adult population in Massachusetts, I was eager to book another drive-thru clinic appointment. The stories I’d heard from people in my communities and The Mast Cell Disease Society aligned: covid vaccines are safe for a vast majority of people with MCAS (and many questions are answered here). I’m not currently eligible for a booster but I will get one when and if it’s recommended.
I would never tell you to get vaccinated regardless of your individual circumstance because I’ve been hurt by medical ignorance and disbelief and I know that rare outcomes happen to real people. But I can tell you that there are many many chronically ill people sharing honest accounts of their vaccine side effects and how they managed them to encourage people with similar symptom profiles to get the shot(s). I can tell you that every single person who gets vaccinated makes all of us collectively safer (which is one reason we all need to care about global vaccine inequity). And I can tell you that anybody who spreads fear about the vaccine while they refuse to live in fear of the virus does not care if our communities survive.
Brianne Benness is the host of No End In Sight and creator of #NEISVoid, a podcast and community hashtag for people living with chronic illness across diagnostic status. Brianne is also a co-founder of Stories We Don’t Tell, a candid storytelling event, podcast and anthology. Brianne is always looking for easier ways to write while lying completely flat.
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