COVID Vaccine Anxiety: What If You Are Immunocompromised?

By Cynthia Toussaint, PNN Columnist

In the midst of our once-in-a-century pandemic, it’s my deep belief that we all have a responsibility to get the COVID vaccine in hopes of extracting ourselves and each other from this crisis. We’re in this together, and if we do our part, we’ll get out of these dire straits faster and with fewer deaths.

That being said, there’s no doubt that getting a full dose is a rockier, less certain road for those of us who are immunocompromised, whether by current treatment (organ transplant, chemotherapy, etc.), wrangling with years of severe chronic illness, or both.

It disturbs and angers me that we were left out of the vaccine trials, but we can’t fight or fix that familiar marginalization now. We also can’t use that as an excuse to sit on the sidelines.

Courage remains our best ally.

Before my first vaccine, I was facing surgery for cancer and was frantic to get dosed as older folk at my swimming hole were already going mask-less. I couldn’t afford to be left behind because my upcoming treatment was dangerous and I was labeled “highest risk” for severe COVID – this due to being immunocompromised from four decades of high-impact pain and five months of chemotherapy.

With that first poke, I was relieved to initially go relatively unscathed, side-effect wise, with only a headache and “COVID arm.” But that arm soon went to hell. For four days I couldn’t move it without shrieking. I imagined this would be the feeling of a bullet piercing my skin, something I’ve heard from other immunocompromised sisters. More bizarre, after my COVID arm eased, it returned a week later with the damp weather.

When my second vaccine date approached, I was anxious, feeling like a guinea pig because even healthy people were getting pretty darn sick with this bookend dose. It spooked me to see the fear in the eyes of my 40-year partner and caregiver after he got his. John rarely gets sick, but his two-day bout with crippling fatigue reduced him to someone struggling to take care of himself, let alone being there fulltime for me.

But I persisted.

Just after receiving that dose, I posted my concern on Facebook, and someone was kind enough to share a National Public Radio article about immunocompromised people and the vaccine. The article supported my firm belief that everyone needs to be vaccinated, while pointing out that as a result of not being part of the study group, its efficacy was not entirely known.

Additionally, researchers urged us to work with our doctors to time treatment with the vaccine for safety and effectiveness – as immune deficiency can compromise potency. I was troubled that my doctor hadn’t weighed these considerations when urging me to get the vaccine pronto.

I had one bone to pick with the article. It mentioned that enough immunocompromised folk had been vaccinated to gain assurance that it would not ignite a flare, stating that side-effects often resembled auto-immune symptoms. I was dubious as most everyone I know with pain had flared significantly.

Still, I’d made my decision. I threw caution to the wind and gingerly decided that I’d respond like a healthy person. I was only going to be sick for a couple of days.

Side Effects From Second Dose

At first I was on track with just a few symptoms, including that familiar headache and low-grade COVID arm. But by the first night, I was quite ill. High fever, chills, fatigue and muscle aches. While those symptoms can be part of a bad reaction for a healthy person, my illness lasted longer than what would be expected. In fact, I was sick for almost a week.

And oddly, mid-week after my fever broke, I woke in the night super-hot, sweaty and chilled again. I suspect I was having a vaccine relapse, something I’ve not heard from others. It didn’t come as a surprise that my CRPS flared badly that week too.  

What threw me for a loop was having many of my long-gone, chemo side-effects return. I had severe spatial difficulties, causing me to run into walls and spill glasses of juice. More unpleasant reminders of those wretched days included distorted eyesight and hearing, a bladder infection, my heart beating too hard, neuropathy, anemia and painful joints and muscles. In fact, one day my hamstring (the original site of my CRPS injury) sprung out of place and I screamed bloody murder until it popped back, allowing me to move.

While those troubles have mostly resolved, my worst two chemo redux symptoms are hanging on a bit longer. Today, five weeks after that shot, I’m still having a hard time holding my back up straight without pain, something unsettling for this former ballerina who prides herself on proper posture.

Perhaps worse, my food tastes a bit like there’s chemo in it. I can get through meals without needing a barf bag, but recently gagged on my water for the first time, post-chemo. At times it’s difficult to touch my tongue to my teeth and to breathe in, due to the rancid taste. 

Despite it all, I’m on the mend and ecstatic that I’m fully vaccinated. It feels damn awesome to know that I made the best self-care decision and the best one for the world. When I get news of friends dying from COVID or see photos of people in the ICU, intubated and at the edge, this is a no brainer. The vaccine is far less dangerous than the virus, and everyone has to pull their weight.

Before rolling up your sleeve though, I advise that, if you are immunocompromised, be prepared to have a longer, more severe adverse reaction. Many of my sisters in pain did, and I had a much tougher road due to chemo. So, stock up your pantry, prep some meals, make accommodations for work and kids and be prepared to bunker down for a spell. Also, I think you’d be wise to have a discussion with your doctor to determine best timing to minimize suffering and optimize efficacy. 

Let’s keep this in mind. We, the mighty immunocompromised, are tougher than the rest. We’re independent, having learned through the most rugged of knocks how to care for ourselves. We also tend to think of others – as we know going it alone is a one-way ticket to malady.  As such, we know the importance of keeping our loved ones and communities healthy.

We can do this. The decision to get the vaccine is about being kind to ourselves and to each other. And in my book, that’s what life is only and all about.              

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has had Complex Regional Pain Syndrome (CRPS) and 19 co-morbidities for nearly four decades. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”