Silencing Our Healing
I had a bad vaccine reaction. Why can't I talk about it?
The facts are these:
Every member of my family from thirteen to ninety-one has been fully vaccinated, most with the Pfizer vaccine, and I am the only one who had a problem.
In March of this year, I received my first dose of the Pfizer vaccine and had a strong inflammatory reaction — the sort that might be expected for a few days. Headaches, joint pain, fatigue. Only my inflammation did not abate, in fact, it worsened — especially in my hands where I had never experienced pain before — and continued for a full four weeks while I waited for my second dose.
I have several complex health issues and this last year was particularly hard for me, physically. I had been in full remission from Myalgic Encephalomeylitis until I came down with a “probable” COVID infection (not test confirmed but all the symptoms) in April of 2020 which left me with long-COVID issues and/or what might be considered a “relapse” of ME/CFS.
By March 2021 those “long COVID” symptoms had pretty much resolved. And so the inflammatory reaction from the vaccine was really concerning, because it was clearly related to vaccination, and some issues, like joint pain, were things I had never experienced before. I asked both of my doctors if I should get the second shot, as I was still clearly reacting to something in the first.
They said yes.
This, it turns out, was bad advice. After the second shot I felt good — like really good — for nine days. Then the inflammation returned, every joint on fire, my lymph nodes swollen and sore, along with fevers and severe fatigue. This is known as a “delayed type III hypersensitivity reaction,” “serum sickness,” or “serum sickness like reaction,” the latter depending on what you are reacting to. It is a rare, but well known, allergic reaction to some vaccines.
The story here is not the reaction itself — I am still reacting, four months later, with reactive arthritis in my hands so persistent it hurts to type this. The real story is the barriers I encountered to accessing good information and treatment, which are due to the political divisions around vaccination.
Things I might have known if COVID vaccination was not so politicized:
I should not have had the second shot. When people react in ongoing inflammatory ways to the first dose of a vaccine, it is generally not recommended that they receive a second as this can indicate an allergy to some component in the vaccine. The physicians I consulted were either ignorant of this or afraid to recommend against vaccination for any reasons, even though to allow the second shot is to risk a potential life-threatening or disabling reaction.
After a reaction I should have been able to access treatment and care, along with statistical information about how others with my complex medical conditions are faring with the vaccines. I’ve been to several doctors since this reaction began, mostly because it created alarming conditions — like the aforementioned swollen lymph nodes, including an intramammary lymph node that had to be investigated for cancer. I asked every provider if they are seeing these kinds of reactions, and most were willing to share — privately — that yes, they were seeing many strange reactions to the vaccines, including several people with reactions like mine.
The most troubling treatment barrier came from my specialist physician, whose medical team refused to tell me if other people with ME/CFS were experiencing reactions — important to determine whether this reaction is a new condition or part of my greater ME/CFS complex — or offer me any treatment recommendations at all. Their response was to say they follow CDC guidelines. Well, so did I, that’s why I’m here. There is a lot of historical evidence indicating that folks with ME/CFS have overactive immune systems, so full dose vaccinations might provide a hyper-inflammatory response. But my “team” neither confirmed or denied this, leaving me in pain, in the dark.
Finally I turned to Instagram for answers, something I have been increasingly suspicious of in this pandemic year, but desperate and shut out by the people who were supposed to help me, I did not know where else to turn.
I immediately heard from many others who had reactions, some similar, some different. Most had coexisting medical conditions. It was a lovely relief to hear I was not alone, and to have some leads on treatments and evaluations. I compiled this crowd-sourced information into a document for sharing, and overall I count the exercise as a successful use of social networking.
But then there were those using my post as an affirmation to not be vaccinated, supporting bizarre claims with my story even when I clearly stated I was not anti-vaccination. Eventually, I removed the post (I recently reinstated it). And have been reluctant to share ever since.
I’ve not ever been an all or nothing person when it comes to vaccines. I think they are both miraculous developments that have decreased or eliminated some really harmful diseases, and they are sometimes overused or have contained harmful antigens — like thimerosal — which may have caused harm.
When my son was two months old he had an unusual reaction to his vaccines, and I decided to do more research. Ultimately this led to me not vaccinating my children until they were in preschool and kindergarten, and even then on a very modified schedule. For example, we vaccinated for tetanus, diphtheria and pertussis, but we did not vaccinate for chicken pox, which my children both contracted naturally.
In recent years I have opted not to get the flu shot. ME/CFS is caused by viruses and inflammation, so introducing more pathogens into my body never felt like a good idea.
My reasons for getting the COVID vaccine were simple: I wanted to safely hug my ninety-one year old grandparents again, and protect those who could not receive the vaccine or for whom the vaccine was not effective. I also wanted to give myself an extra layer of protection from the virus. Even if I already had COVID, I did not have measurable antibodies. Viruses have caused me a lot of problems, this one is no exception, and I don’t trust my body to function like a normal, healthy body should.
This is just another area where the political divisions make a complex thing with personal and social dimension into a false dichotomy, silencing anyone who would speak out.
Our “enemy” right now is not COVID — COVID is a virus. I learned long ago that viruses (I had five living at subclinical levels in my body during the worst of my disease) seek to replicate and survive. There is no hate in a virus, no intent. The word enemy, “one hateful toward and intent on harming someone,”1 is directed at humanity, and the human condition of hate and harm includes the silencing of those who complicate our “cause”. In the vaccine wars, the “cause” is framed as for or against, the hate comes from frustration and fear, and the silencing of those who fall outside of neat categorization is essential to preserving the dichotomy.
Sharing stories with all of their nuance and flaws is part of what it means to be human. Complexity can increase compassion, invite dialogue and open the way for informed decision making. If I had been able to access complex nuanced information about the vaccine and its potential impacts, I would have known to take an antihistamine prior to vaccination, request a modified dose, and not pursue further vaccination until my symptoms had resolved completely.
Surrounding vaccination is a culture of fear.
Fear that if you speak about any negative aspects you will prevent people from choosing vaccination, putting them and others at risk.
Fear that if you are responsive to difference you will prevent people from choosing vaccination, putting them and others at risk.
The culture of fear from my doctors prevented me from receiving quality guidance, care and treatment when I needed it most.
The culture of fear prevented me from speaking out about my experience, leaving me isolated and delaying treatment as I could not access options without more information and support. The censorship of vaccine information and deliberate ranking of certain pages in search engines is part of this process-problem. I understand the need to try and guide public discourse in a divisive pandemic, but it made my journey to find quality information about vaccine reactions really challenging.
This silencing in the medical community may be systemic, but my silence has been self-imposed. It is not the only area of my life where I have felt the pressure to choose sides and be quiet about complexity, it feels sometimes like many social issues today make these same demands.
If storytelling is part of what makes us human, then silence is dehumanizing.
Right now, we need to reclaim our humanity in small ways and large.Let’s bring a shelter of nuance and root to these issues we all — whatever our experiences or opinions — somehow share.
If you have a story you are afraid to tell, please do so.
I’m listening.
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References and Resources
1. The Online Etymological Dictionary, https://www.etymonline.com/word/enemy
2. This power point presentation discusses reactions to the COVID Vaccine, including delayed type III hypersensitivity reactions. .67% of patients in clinical trials had a reaction like mine to the Pfizer vaccine:https://www.kaleidahealth.org/coronavirus/support/providers/mgr/MGR-Allergic-Reactions-to-mRNA-COVID-19-Vaccines-021621.pdf
3. Information about serum sickness and serum sickness like reactions: https://www.ncbi.nlm.nih.gov/books/NBK538312/
4. A case from this year involving a delayed reaction to the COVID vaccine: https://www.aaaai.org/Allergist-Resources/Ask-the-Expert/Answers/2021/mRNA
5. Serum sickness symptoms, diagnosis and treatment — and how it can persist for months: https://empendium.com/mcmtextbook/chapter/B31.II.17.2
6. I found this clinician call transcript from the CDC interesting in that it demonstrates that these reactions were being seen: https://www.idsociety.org/globalassets/covid-19-real-time-learning-network/4-24-clinician-call-qa-final.pdf
I have prepared a document of crowd sourced vaccine reaction treatments. You can download it here:
crowd sourced support
.docx
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