Opinion | Why reports of period weirdness after covid shots were ignored - The Washington Post | By The Perfect Enemy
Kate Clancy, a biological anthropologist and professor at the University of Illinois, is the author of “Period: The Real Story of Menstruation,” from which this op-ed is adapted.
One day in early 2021, Katie Lee, a former student of mine who is now a professor at Tulane University, sent a message asking if I’d heard anything about heavier or breakthrough bleeding with the coronavirus vaccines. I hadn’t, and put her message out of my mind. Two weeks later, I received my first dose, and soon afterward I got my period. I bled so heavily that I was swapping out overnight-strength pads every hour.
I decided to tweet out a query: Has anyone else had changes in their periods since receiving the vaccine?
The response was unlike anything I’ve ever experienced on social media. I was bombarded with similar stories. Within a few hours, Lee and I were furiously messaging each other, and soon we developed a survey seeking to explore further whether coronavirus vaccine side effects might extend to changes in periods.
We expected about 500 people to participate — and ended up with more than 165,000 responses.
Our survey was intended to document participants’ experiences with the early vaccine rollout — to collect these data on the ground, as they emerged — and, as such, our sample was self-selected. But the sheer volume of respondents surprised by heavy and breakthrough bleeding was striking. Changes in menstruation were uncomfortable and often painful, people reported. Strangers described bleeding through their clothes at work. Postmenopausal people were terrified they had cancer.
Yet those who endured menstrual side effects described how family members had laughed off their experiences, and how some medical personnel had been dismissive and rude. One respondent reported bleeding so profusely that she expelled her IUD into the toilet; her doctor didn’t believe her and ordered an ultrasound, which confirmed what this participant had seen: The IUD was no longer in her uterus.
Journalists who interviewed us spoke with doctors who tended to declare that menstrual changes were from pandemic stress and to suggest that no biological mechanism could link vaccines and menstruation. Much of the coverage of our research foregrounded views that cast us as ridiculous ladies doing ridiculous research.
Yet without our intentions, or our methodologies, the National Institutes of Health might not have been inspired to release funding to support research studying this reported phenomenon, and we wouldn’t have multiple studies and surveys supporting our early findings that the coronavirus vaccines can induce short-term changes to the duration and flow of menstruation.
Here it is important to emphasize: Without a doubt, vaccines save lives; and the coronavirus vaccines reduce severity and the risk of long covid. I continue to advocate for greater access to boosters, and global vaccine equity, alongside measures that reduce transmission, such as masking.
At the same time, it is medical scientists’ duty to predict, look for and, if found, disclose side effects — and here is where I believe some in the medical community fell short.
We have long known that immune responses can influence menstrual cycles and that vaccines can occasionally affect both inflammation and menstrual bleeding patterns. Yet clinical trials of the coronavirus vaccines did not ask questions about menstruation beyond inquiring about date of last menstrual period at the start of the study, to ensure participants were not pregnant. A participant in one of the trials emailed me to say it took two tries to persuade her trial site to include anything in her chart about her menstrual changes — the first time, they refused on the grounds that she was probably just perimenopausal.
As a feminist anthropologist who studies the stigmatized, I am used to this — but I am weary of it. I am tired of menstruating people being questioned, mistrusted or ignored when they report their lived experiences, especially since not addressing side effects risks turning people away from vaccines.
There is a better way — something the team in my lab endeavors to engage in — what the anthropologist Anna Tsing calls the “arts of noticing.”
To explain what she means, Tsing uses the metaphor of polyphonic music: multiple independent melodies played together. To do the work of noticing, she says, we must be willing to step back from the idea that there is one dominant melody — to “listen for the moments of harmony and dissonance they created together.”
How does this apply to, say, a coronavirus vaccine trial? A trial design with more qualitative, open approaches would hear far more melodies. A trial design that considered the multiple systems, such as the reproductive tract, that can be affected by an inflammatory stressor such as a vaccine might not miss multiple refrains. And daily adverse event reporting could last for longer than a week, to give a monthly process such as menstruation time to respond. Noticing allows us to follow multiple threads without allowing one to overshadow — to see variability, subversion and resistance.
Unfortunately, this approach runs counter to the way modern gynecology has been practiced since the middle of the 19th century, when Black and Brown midwives were pushed out and often criminalized. We lost the noticing that comes from experience, in the desire to create an accredited form of “expertise” available mostly to White men. This resulted in just two lines of melody for those who had a uterus: Either you had to be protected at all costs or any symptoms you might report were a figment of your imagination.
Those limited melodies can be seen in today’s uterine health care. Half the time, there is hand-wringing over fertility (fears of its being reduced if you are White or of having too much of it if you are not), and the other half, there is minimizing of one’s intimate physical experiences as overblown — as happened with reported responses to coronavirus vaccines.
Anyone who menstruates will bleed a lot, for much of their lives — and changes in menstruation are notable, meaningful and worthy of study. Lee and I did the work of noticing what happened after we got the coronavirus vaccines because we have bodies that menstruate and have scientific knowledge of menstruation. But that noticing also came from adopting a feminist practice and sense of responsibility to acknowledge what some were obstinately refusing to.
Menstrual changes matter to millions of people, and pharmaceutical companies, medical professionals and politicians need to invest in research and provide incentives for redesigning research so that it accommodates menstruation.
Transparency about the experiences of menstruating people is also needed if scientists and clinicians want to earn public trust: What do we notice when we relax the desire to control uteruses and instead respect their complexity? When we listen to what people with uteruses are experiencing?
Medical treatments and vaccine trials — for coronavirus and other maladies — will continue to disserve those bodily systems about which they ask no questions. We deserve better than to be surprised when a new treatment makes us bleed on our office chair.
#Black, #Coronavirus, #Coverage, #Pregnancy, #PublicHealth, #Vaccines
Published on The Perfect Enemy at https://bit.ly/3KRTbgs.
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