NYT's big article on vaccine side effects is a long time coming

I felt alone and isolated by my weird and very itchy side effect. Today's news coverage will help many people like me feel validated and seen.

It was with both frustration and relief that I read today’s New York Times’s story, Thousands Believe Covid Vaccines Harmed Them. Is Anyone Listening? (I am sharing the link as a “gift” article free of the paywall, hope it works?)

I am one of the thousands. (Which I suspect is more like tens of thousands, if not higher.) For so long, I have been embarrassed to talk about it, fearing people would think I was a crazy vaccine conspiracy theorist. Especially because what I experienced wasn’t life-threatening, just highly annoying.

How it began: In November 2021, five days after my COVID booster shot, my skin lost its mind. Drying off after a shower left hundreds of marks across my torso that looked like pinpricks. A metal clasp on my purse strap created a long red streak on my arm from when I tossed it across my shoulder carelessly. Even applying sunscreen with too much pressure resulted in forehead welts.

This was my skin WITH high doses of antihistamines, a condition that developed five days after my booster shot.

The pinpricks and the streaks and the welts were itchy, so I’d scratch them. And when I did, the pattern of my scratches would appear on top of the other marks, creating layer upon later of what I’d soon find out were “skin writing” hives, known medically as dermatographic urticaria.

I was so itchy and so miserable. High doses of antihistamines didn’t work very well and they made me so sleepy I could barely work, even the “non-sedating” ones like Zyrtec. I eventually started taking Xolair, a monthly injection, which requires going to my allergist’s office and getting poked in the back of my upper arms. It’s time-consuming and requires “pre-authorization,” but so worth it.

As a human, I was annoyed. As a health journalist, I was fascinated. Considering the timing, I couldn’t help but wonder: Did the vaccine do this to me? If not, why did it suddenly hit me so hard and fast with such uncanny timing? My allergist said it was impossible to know for sure, but most likely, it indeed was a side effect.

And I was far from his only patient with the same story.

That was a shock to hear. He had other patients like me!? This was at a large Austin clinic. Surely there were many more of us across the US. Where was the news coverage?

Despite the evidence, I couldn’t get any editors interested

I decided to dig deeper, discovering patient forums filled with people like me. I also found early medical evidence about the link, and even a COVID-19 vaccine case registry from a team of Mass General Hospital allergists who are documenting immediate and delayed allergic reactions to the vaccines. That same team also published a study on hives and the vaccine. For separate reasons, I had my vaccine antibody levels measured and they were so high they couldn’t be measured.

Emboldened by all this anecdotal data, I decided to pitch the topic to editors at several major publications:

And they all said no.

I am speculating, but I got the sense that their rejections were due in part to the touchy nature of talking about vaccines, fearful perhaps of being perceived as “anti-vaxxers,” they wanted to tow a moderate stance. Or maybe it’s just that hives aren’t that sexy to talk about.

On one hand, I understand the editors’ reluctance. There were many false narratives circulating about the vaccine. On the other hand, ALL treatments come with side effects and risks, and patients have a right to be informed.

While hives are not discussed in the main NYT article linked above, they are ever-so-briefly mentioned in the sidebar, Covid Vaccine Side Effects: 4 Takeaways From Our Investigation. (Also a gifted URL.)

Where is the guidance?

I’d love to see more guidance for people like me, with annoying-but-not-life-threatening side effects. When can I stop taking Xolair? What are my risks of getting a COVID booster now that this is my reality? And so on.

Still, any major media coverage is a start—the world’s preeminent newspaper coming out and saying hey, you’re not crazy. This article will help a lot of people out there feel validated and seen, including me, after two years of feeling gaslit and ignored.

Also, I want to point out I’m pro-vaccine. My gripe is about hiding the unknowns, silencing patients, and pretending a new treatment is without risks. As I discovered during my own research, hives—especially dermatographia—can happen after any infection or vaccine. In some people, the introduction of a pathogen (or its vaccine mimic) triggers the immune system to overreact.

So far, I’ve elected not to get a booster shot. Time will tell, but I believe one day we’ll discover the dose and/or frequency is too high for some people, especially healthy women of childbearing age. (We are also most at risk of developing autoimmune disorders.)

While I never did get a news article published on vaccine-related dermatographia, I did eventually get an essay published in a small print-only journal, The Quarterly.

My condition used to be called ‘Satan’s Stigmata’

Rather than expound on the vaccine connection, I instead explored my emotional reaction to having a new chronic but benign condition, as well as another fascinating detail: How women with dermatographia used to be considered marked by “Satan’s stigmata,” and subjected to cruel medical experiments.

I reprinted the essay on my personal website, and you can read it here:

“My weird saga with dermatographia. Once considered a sign of witchcraft and “Satan’s Stigmata,” we now know better. Sort of.”

Here’s an excerpt:

According to records from the mid-1850s, doctors would scrape words on their female dermatographia patients and photograph them using cancer-causing radiological material.² In at least one horrible case, a woman who refused to undergo the experimentation was held down and subjected to hot pokers placed on her lady parts. Yes.

This extreme vitriol was a relic of the medieval belief that skin writing was not an allergy but rather “diabolical dermatology.”³ Back then, for example, if you had slapped my back and the shape of your hand appeared, it was definitive proof that the devil had “marked his own,” also known as “Satan’s stigmata.” While I do often feel possessed by a fleet of tiny demons poking pitchforks into my skin, I am (fairly) certain Satan isn’t running the show. Regardless, off to the criminal sanatorium I would have gone.

Crazy, right? We’ve come a long way with compassionate medical care, but the journey definitely isn’t over.