My Qualifying Statement
I am not an anti-vaxxer. I believe in the science of vaccines and advocate for their use. I believe that I am an integral part of a community and that beyond my own safety, I have the responsibility to keep my family, friends, neighbors, and colleagues safe, too. I subscribe to the ideologies of herd immunity, something Eula Biss describes well in her meditations on Inoculations where vaccines are effective only in terms of a collective body, "...it is through us, literally through our bodies, that certain public health measures are enacted." Those who vaccinate protect those who do not from deadly illnesses.
There was no way I could have known that two COVID-19 vaccines plus one booster combined with high levels of chronic stress and an undernourished and underslept body would be so lethal. The vaccine was the catalyst that set my body ablaze, unleashing a cascade of autoimmune dysregulation. I was newly divorced and transitioning to single motherhood. At the time, I was also trying to land a full-time job out of a rocky contract gig that left me financially unstable. Like so many mothers, I didn’t know how or where to ask for help despite being overly exerted. I was a tinderbox in waiting.
A Nightly Struggle
A year and a half ago, my bedtime routine was complex: first the pills: one opioid, two immunosuppressants, four Aleve, and one muscle relaxer. I would then rub a CBD salve on my shoulders, arms, hips, and hands. As I did all of this, I drank a CBD drink and put a CBD sleeping tab under my tongue. I arranged my pillows on my bed into an insular layer around me, one tucked behind me like a lifeless but soft human spoon, another between my knees for cushioning, and the last under my head. If everything went well, I would get about three hours of continuous sleep before the pain in my shoulders or hips would wake me up. For the rest of the night, I adjusted or took more painkillers. On really bad nights, I would get into the shower to make my body hurt less.
I had 910 sleepless nights like this.
According to my sleep data, I began sleeping again in May of 2023. The pain subsided, but I had residual tendon and muscle injuries from the chronic and extreme inflammation. My wrists no longer bent; my fists no longer closed; my hands no longer straightened; my hamstrings no longer stretched; my tendons were hard and visibly thick; and my muscles became so atrophied that the skin on my forearms and thighs felt papery thin and loose.
Adjusting to a New Normal
I grew accustomed to my different body. To not being able to open jars or water bottles. To not being able to hold a cup or put on my bra or carry grocery bags or give a piggyback ride to my three-year-old son. There were days when not being able to lower myself to the ground to garden alongside my daughter would overwhelm me with frustration, and I would sob, longing for who I was. But mostly, I moved through my increased limitations mindlessly adjusting, dissociated from it all. I saw no roadmap nor compass to navigate me back to where I had been. Most of the time, I was too exhausted to search. I survived the best I could.
Where it Started: My COVID-19 Vaccination Experience
I received my third COVID-19 vaccine in December of 2020. Flu-like symptoms started immediately. My body ached. I expected not to feel great after the vaccine; people told me they were knocked out for a day or two but they got better. My symptoms increased when they should have abated. My shoulders became inflamed, my feet swelled, and my hands felt like they had been stuck in a freezer for an hour.
Seeking Answers
When I first described my symptoms, my initial rheumatologist nodded, shrugging off any mention I made of the COVID-19 vaccine being part of my condition. Instead, he exclusively addressed the blood inflammation markers in my labs and the swelling he could see in my joints. He drew a Venn diagram for me and showed me that people with X condition are here, and people with Y condition are there. I seemed to be somewhere in the middle-ish. He diagnosed me with an autoimmune condition called undifferentiated connective tissue disease. His resistance to draw even a correlative relationship between my symptoms and the COVID-19 vaccine was similar to my friends, family, and colleagues. It was risky, and in the end, at least in my doctor’s mind, it didn’t matter. Here was my diagnosis and there was my treatment plan.
I sought a second opinion in March of 2022. My new rheumatologist listened to my story for over two hours. He reviewed my labs and asked about my medical history. He examined my body and explained "it was possible" that the COVID-19 vaccine catalyzed a hyperactive and systemic inflammation response. According to MRI scans my tendons and joints were under attack and becoming damaged. There was physical evidence of something wrong.
The Road to Recovery
My doctor's treatment goals were to reduce my pain and stress while increasing my sleep and mobility. He helped me get through the days with painkillers and aqua therapy, both of which enabled me to move without seizing from waves of pain.
Each day for nearly two and a half years, my symptoms were different. I tried various drugs, exercises, teas, and herbs. I went on an anti-inflammation diet meant for people living with multiple sclerosis, began drinking special ginger and turmeric juice three times a day, and fell into a routine of hot baths at night and cold showers in the morning. I have been angry, devastated, optimistic, discouraged, and resigned. I've learned about the importance of rest and living a stress-free, low-drama life. I've learned to ask for help from my family and friends. And I've learned to listen to my body. I’ve also learned to be ok without a diagnosis and to sit in frustrating silence as someone who has sustained a COVID-19 vaccine injury.
The Need for Nuanced Conversation
With COVID-19, we have missed an opportunity to talk about vaccines in a nuanced fashion. We have trapped their complexities into a communications quandary, where there is pro and there is anti and nowhere in between. Both sides of the story are motivated by the same multitude of fear-based emotions.
Rather than being part of emerging conversations that lay out a landscape of possibility for connecting with and learning from others who have had related experiences, I find myself alone, existing in the shadows of the wake of the pandemic. Nobody wants to know that somebody with my experience can truly exist. COVID-19 vaccine injuries remain for the most part unmentioned. Collectively, we are the unmentionable.
The Countermeasures Injury Compensation Program (CICP) has reviewed over 2,600 COVID-19 vaccine-related claims and of those 51 have been deemed eligible for compensation, 12 of which have been paid with an average of about $3,000. What is the value of a lost ability to stand? To be able to flow with life with ease rather than constantly measure one’s capacity? For the loss of any sense of self and comfort? For a capacity to find and maintain health, love, motivation, or productivity? What is the value of one’s sense of identity?
It is a disservice to us all to ignore those inconvenient truths about vaccine injury. While scientific consensus supports the overall benefits of vaccines, the means through which those benefits are communicated squashes thoughtful and public discussion of the potential risks.
The concept of informed consent is central to medical ethics. It involves communicating both benefits and risks to patients. With vaccines, this includes discussing common side effects as well as rarer adverse events. Ultimately, policymakers and individuals must weigh multiple factors: the risks of diseases, vaccine efficacy and safety profiles, personal health considerations, and broader public health impacts. How do we optimally hold and act on these concerns? What is the right balance between personal sacrifice and collective well-being?
While these questions continue to be teased apart, there are still those who exist with vaccine injuries. They, we, should be recognized as part of the pandemic's collateral damage rather than silenced or dismissed. A great social experiment just occurred and we are part of that. We are one part of the millions and millions of COVID-19 pandemic stories about loss: homes and families; identity and potential; vigor and social connection; and most importantly, time.