Getting the COVID-19 vaccine: I put my faith in science, Moderna, and myself
As someone whose immune system confounds me, I thought I’d wait longer to take the COVID-19 vaccine. For years, I avoided flu shots due to my uncertainty about my immune system’s reaction. At some point in my early life a bacterial or viral infection, perhaps childhood chickenpox or roseola infections, triggered a faulty immune response. My body attacked healthy tissue, resulting in a systemic autoimmune disease, Sjogren’s, that causes me dry eyes and mouth, crushing fatigue, chronic pain and inflammation.
For people with autoimmune diseases, which remain poorly understood, the vaccination decision doesn’t come lightly. According to the Centers for Disease Control and Prevention, we may receive mRNA COVID-19 vaccines but no data currently exist on their safety for us. Questions remain about short- and long-term vaccine reactions, with misinformation adding to the fear, setting us on a roller coaster of tough choices with no clear answers.
Since mid-December, I’ve fielded questions from people in health care and law enforcement with autoimmune diseases who solicited my advice after reading a vaccine safety feature in which I discussed my condition. I felt the weight of their life-altering vaccine decisions, not as an “expert” but as a fellow traveler with my own questions and anxieties. I listened and shared trusted information sources, suggesting they consult their doctors.
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I wrote that I planned to wait several months to the boyfriend of a United Kingdom health care worker, who sought information for her. Six weeks later, I took my first COVID-19 vaccine dose. What changed?
I followed my own advice.
Assessing my own risk
My conversation with my rheumatologist didn’t vanquish my uncertainty, as I’d hoped. She confirmed the lack of long-term data. It’s my decision, she stressed. My heart sunk at the prospect of more pandemic-induced decision fatigue. But I needed the chat to move forward. With variants closing in and rewriting everything I thought I knew about keeping myself safe, COVID’s known dangers, especially for me, outweighed any unknown vaccine risks. I accepted the vaccine’s small risk of an allergic reaction, a flare of my condition, or possibly Bell’s palsy, as preferable to COVID’s potential for severe illness, unknown long-term complications, and death.
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Aside from death, most worrying to me is the growing number of people, including those in their 20s, 30s, and 40s, now struggling with long-haul COVID symptoms such as brain fog, fatigue, and trouble breathing, that have hampered their quality of life and ability to work. Researchers are investigating the possibility of an autoimmune-like syndrome in which the body turns on itself after contracting COVID.
My autoimmune diagnosis at an early age, 26, already predisposes me to severe Sjogren’s disease. The threat of incurring a new, mysterious lifelong syndrome is terrifying, and I fear waves of young people may face permanent disability post-COVID.
The inspiring example of nurse Sandra Lindsay, a Black woman among the first in the country to receive the vaccine, further reassured me. “I feel like healing is coming. … I believe in science,” she said. Her calm bravery stirred my civic desire to contribute. I felt uneasy about allowing others to serve as test cases, including my sister in a nursing home who received her second Pfizer dose mid-January, and enrolled in my university’s study about vaccine reactions in people with autoimmune conditions. I hope this small data point adds to collective knowledge others need to feel confident about taking the vaccine.
Don’t dismiss our concerns
The day of my pre-vaccine study blood draw, heavy rain fell through streaming sun, and a double rainbow formed over the Oakland Hills as I walked through the flatlands of 94601, a zip code with a heavily Latino population and among the highest COVID rates in the Bay Area. People with surnames like mine have suffered the pandemic’s disproportionate devastation. Healing is coming, I thought, with quiet hope.
Initially I experienced mild vaccine side effects, a sore arm and fatigue. A rough second week brought delayed injection site swelling and an angry red rash, swollen lymph nodes, severe neck pain, and headaches that correspond with the Moderna vaccine’s stated side effects. A few days of pain and swelling in my wrists and fingers made it difficult to fasten my necklace clasp, lift my glass, and squeeze a ketchup bottle. Upon my doctor’s recommendation, I reported my side effects to the Vaccine Adverse Event Reporting System (VAERS). By the time I received my second shot last week, I was ready.
This experience has reinforced the importance of good relationships with health care providers. I haven’t always had them. Many doctors have dismissed me and treated me like a hypochondriac, even with a Ph.D. after my name. While pro-vaccine messages from public health figures and trusted community leaders remain important, one-on-one conversations with health care providers who respond with empathy and patience to questions about the vaccine, whether fertility concerns or rumors of vaccines carrying tracking microchips, are crucial if we hope to vaccinate enough Americans.
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The historical legacy of racism in the medical system explains some vaccine distrust in communities of color, but current bias also fuels hesitancy. Black and brown Americans continue to have more demoralizing interactions with health care providers. Tina K. Sacks’s research shows the discrimination that Black middle-class women face in medical settings, forcing them to counter harmful stereotypes to secure quality care.
A recent example of this harm is the case of Dr. Susan Moore, a Black physician hospitalized with COVID-19 who spoke out about receiving allegedly inferior medical treatment and disregard for her pain. She later died. A recent survey from the National Foundation for Infectious Diseases showed a great reluctance among Black women especially to get the COVID-19 vaccine. We cannot afford to ignore their concerns, as they occupy positions of influence in their families and communities, often provide the bulk of care to children and older adults, and will shoulder more responsibility for getting their families vaccinated.
We make the best decisions we can, based on the partial information we have available to us in any given moment. In the uncertain present, I look back and remember as a teenager losing my mother to a preventable cancer. I know how precious life is and how quickly it can be ripped away. I also look forward to having another layer of protection against COVID for my patient-facing research and caregiving for my 78-year-old father with comorbidities and younger sister with multiple disabilities. Maybe I’ll even get to sit at a bar again one day. But I won’t second guess myself anymore. I’m not only putting my faith in science, but in myself.
Stacy Torres, a member of USA TODAY’s Board of Contributors, is an assistant professor of sociology in the Department of Social and Behavioral Sciences at University of California, San Francisco.