Dismissal of bodily experiences and loss of trust (2)

Well, between getting ready to write this post, building on my previous one, Keren Landman of Vox has come out with a fabulous piece that covers some, but not all, of what I had hoped to say. I will reference her post along with what I planned to write!

It does set the tone, so I will start out by quoting it:

“Last month, the National Institutes of Health announced publication of a study it funded on menstrual changes associated with Covid-19 vaccination, the first peer-reviewed study of its kind. Earlier availability of this data might have enabled “prebunking” of vaccine-related fertility myths, dampening their spread and impact, but by the time the NIH noted in a press release that the results were reassuring, the damage had already been done.”

It may be hard to tell, because I was angry when writing this post, but overall I am pretty sure it has three points:

  1. As in the previous companion post, when a clinician–on the waiting room or on TV or wherever–dismisses someone’s experiences, it opens up the door for that person to seek validation and other information elsewhere, which is often not optimal.
  2. A particular set of vaccine-related concerns could have probably been foreseen and built into data collection and communication-related plans from the outset–but wasn’t. These have a ‘curious’ organ-specific flavor to them (people who menstruate & people at risk for breast cancer).
  3. We *still* aren’t doing the research on how to communicate information to patients before, during, and after getting a COVID shot. What the hell are we doing?

*In this post, I use PWM for People Who Menstruate, which is more inclusive and accurate than ‘women’

My working (though as yet under-researched) hypothesis is that concerns about fertility are one of the oldest, as well as most globally pervasive, rumors about vaccines: some of the original misinformation. Certainly, these concerns have popped up regularly since the 1950s. My guess, though I am still on the hunt for evidence, is that fertility- or sterilization-related concerns cropped up nearly from the beginning of vaccination efforts, whether among women, and/or minorities, and/or the poor. It may be that, in part, because we lack subaltern histories, we can’t trace the full set of concerns people had when they encountered vaccines.

To begin to tease this apart, I reached out to fabulous–and, as it turns out, kind!–historian Andrew Wehrman, whose book (The contagion of liberty) is available for pre-order. In Andrew’s research, he did not come across fertility concerns (yet… next book, Andrew?). Nor did he find that these concerns were at the root of anti-vaccination protests.

But he did come across a lot of concern about the effect of vaccines on pregnant and lactating women, rooted in general common knowledge that smallpox itself could be particularly pernicious for pregnant people (that disease awareness was much higher among people may be an interesting variable for future consideration). Physicians in the second half of the 18th century gave heterogeneous advice about whether pregnant people should be vaccinated. Andrew pointed me towards an early medical experiment on inoculation, carried out by Dr. John Quier on enslaved people in Jamaica (as reported by Londa Schiebinger in a series of books I am now also adding to my reading list). He reported in 1770 that physicians could freely inoculate pregnant women without harm to mother or child; the guidance provided by individual physicians continued to vary.

Andrew speculates that all of this may have been the root of present-day concerns about links between vaccines and sterilization. I think this is possible but I do wonder if there are other roots (Malthus was writing in the 1790s for example). I realize that I don’t know enough about how concerns about population size and composition influenced public policy between, say, 1798 and the 1920s, such that various subalterns may have had reasons to worry about the types of power the state was exerting through vaccination efforts (nor do I know enough about how aggressively vaccination was targeted at poor people during these times). More research to do, more tea to drink…

In the meantime, though Heidi Larson, in Stuck, has pulled together at least some of the times and places that concerns about population control and vaccines have cropped up during post-WWII decolonization, in what are now mostly low- and middle-income countries. Heidi seems to draw heavily on the work of sociologist Amy Kaler, who examines the 1950s onward. Heidi writes:

“These rumors across multiple countries were attributed to the polio, smallpox, tetanus, and measles vaccine specifically and sometimes childhood vaccines broadly; all were feared to cause infertility… These rumors reflect a more generalized anxiety about survival and a deep distrust about the motives of the system. To those who spread and believed the rumors, it was not a matter of whether they were fact or fiction, but whether they seemed plausible and explained phenomena that were unfamiliar, not ‘logical’ in their culture or social setting or experience, or that somehow confirmed already brewing suspicions. As Kaler reflects, ‘even the most superficially bizarre rumors can be credible.” It is, after all, about their believability, not the facts.'”

These rumors trace from Nigeria to India, spreading around the globe. Heidi further notes:

“The rumors around the tetanus vaccine traveled the world, sparked by a misinterpreted research paper on a contraceptive injection and suspicions around a meeting convened by the WHO about expanding contraceptive options and focusing on ‘fertility-regulating vaccines.’ These rumors fall onto fertile ground in the context of growing attention to population control… In May 1995, a news wire went out in Washington DC: ‘Fr Matthew Habiger, PhD OBS, president of Human Life International today called for a congressional investigation of reports that millions of women in Mexico and the Philippines have unknowingly received anti-fertility vaccinations under the guise of being inoculated against tetanus.’ The vaccine sterilization rumors were circulated to 60 countries through Pro-Life chapters in the Catholic network.”

“In early-2017, WhatsApp and Facebook posts spread across the southern states of India instilling anxiety and doubt about a measles-rubella vaccination campaign… [The campaign] was disrupted by a social media storm fueled by a mix of conspiracy theories, safety concerns, and rumors that the vaccination was intended to sterilize the Muslim minority population… A year later, the same rumors sparked emotions through another WhatsApp campaign in Uttar Pradesh (UP), causing several Muslim schools to refuse the vaccines… In some cases, the madrassas did not allow health officials to enter the school while others encouraged students to stay home on vaccination days due to rumored fears that the vaccines caused infertility… These rumors echoed polio vaccine sterilization rumors that had circulated in UP in early 2002. The fears then were around the motives of Western countries supporting the global polio eradication effort but who were also engaged a post-9/11 war on terror, sometimes interpreted as a war on Muslims.”

I will note that I was given other promising leads, which I have not yet had time to explore, including looking at our better understanding of DNA, the HPV vaccine, and the beginning of parent advocacy about vaccination as places to further explore the links between vaccine mistrust and fertility concerns.

The importance of all of this is not that history is neat–though it is!–but that when something is an incredibly poignant touchstone for hesitancy and fears, you’d think it would be top-of-mind to get out ahead of it from the outset. There is more work to do here, though it may also be true that there are some subaltern voices that may simply be lost to history. Even if incomplete, social scientists and historians had important information about what we might expect during a vaccine rollout. That makes the next bit all the more infuriating.

My experience(s)–first- and second-hand

I usually get a one-day reaction to the flu vaccine, which I have gotten every year since college (and sometimes twice a year as there is a different vaccine for the northern and southern hemispheres!). As a brief aside, I asked clinicians *for years* why I got this reaction when it was not a live virus vaccine and so many told me they didn’t know before one took the–literally, used correctly–one minute to remind me that aches, headache, and chills are pretty of a pretty standard immune response, which is what I was expressing. And that the strength of my response actually meant my immune system was really working, not that it was bad.

Knowing this about myself, I assumed that I was highly likely to have a reaction to the COVID vaccine. In preparation, I pre-registered a sick day as soon as my vaccine appointment was made on the assumption I’d feel gross the day after the shot. I then also did absolutely no one should do and pulled an all-nighter before my vaccine appointment to get some work out in anticipation of being offline.

Which is to say that my body was definitely already in rough shape for vaccine day and that I felt generally grungy and achy, especially after the shot. I also got my period a few hours after getting my shot–heavy and mid-cycle. No matter what caused it–Stress? Eating chocolate late at night? The shot?–this is a factual thing that happened.

That this was A Thing I Experienced was completely dismissed when I went in for my next doctor’s appointment (female, if you are curious). Not with any reference to my charts, mind, even though I enter menstrual cycle information every time I go to the doctor. I was accused of just not really knowing my cycle (I am an avid tracker). The doctor just acted like, well, oopsy daisy, periods are soooooo weird.

I have talked to several people-who-menstruate (PWM) with similar experiences, both of some cycle weirdness (though not exactly like mine) and of dismissal. Not that it matters but most of these are also people-with-health-related-PhDs, so credentials aren’t making this situation better, as we all appear equally stupid in paper gowns, apparently.

Cait Lamberton is so much more eloquant than me! She wrote me: “If we fail to address a sacred and personal fear, we invite those who will gladly exploit it to address it in ways that serve their purposes.” [cry emoji]

As people with periods, we have talked, on organizational Slack channels and Zoom calls and beyond, about how it gets harder to talk to friends and loved ones who have fertility-linked vaccine concerns–as do some of my cousins–when you’ve had this experience and have no way of speaking intelligently about how this can happen but it does not have long-term consequences. I haven’t gone deep online but I am sure I could find many more menstrual mates with questions there if I looked (such as here, as a start).

And here’s the thing: the uterus is part of the reproductive system. So PWN who experience this and raise these questions are not crazy or stupid for wondering if it affects your reproductive system and fertility more broadly (it doesn’t, as I outline below). It may not be factually correct but it is not implausible or illogical to have questions about what is going on or what it means. And when clinicians dismiss them rather than engage with them, this is deeply problematic. It disaffirms that PWM know something about their own bodies and it belittles a question that is logical.

Both of these are precisely what might drive someone to look elsewhere for answers, where they might find validation for their experience and their questions, which could lead to openness to receiving advice on what to do about it (avoid the vaccine, disengage from the medical system, take various herbs, and so on).

Just to provide a bit more of an example, I reproduce below a Slack thread from Jan 2022 in which women (in this case, all the PWM who were conversing were women) are figuring it out–but we’re just guessing and, frankly, doing our own research when we shouldn’t have had to. This workplace-conversation happened after I had WhatsApp conversations with each about our own period-related reactions to the shot.

Amidst all of this, I want to call out one other teachable moment that was squandered. Remember Nikki Minaj’s Tweet about her cousin’s friend’s testicles and all the ‘hilarity’ that ensued? Fauci came out and said there was “there’s no evidence that it happens, nor is there any mechanistic reason to imagine that it would happen,” where ‘it’ is the “COVID vaccine causing any reproductive issues in men or women.” I like Fauci and want us to have strong institutional spokespeople who can be solid explainers-in-chief. But this was a dismissive comment that, so far as I can tell so far (going to try to put together a proper timeline), pre-dated any systematic data collection about the experience of specific male or female reproductive system reactions to the vaccine, no matter how minor or temporary. I have been diligently reporting my post-vaccine experiences to the CDC’s VSafe system (where do those data go???) and have yet to be asked about symptoms relevant to people who menstruate or any other biological-sex-specific experiences. If those entrusted to explain things to us speak too far beyond the evidence (recognizing we never have full information in evolving situations), this opens up space for distrust.

Moving forward

There are a few things that haven’t happened vis-a-vis this vaccine:

  1. Behavior change, programming planning, and historical knowledge do not seem to have been at the table for any kind of vaccine & communication rollout brainstorming. I do not know who was there or if there was such a meeting but it is very clear now what did not happen.
  2. Data weren’t collected on gendered health issues from the outset, as Keren covers well in her article.
  3. There is no (widely known? incentivized?) mechanism for individual clinicians to report up to “the system” symptoms and experiences that they hear from their patients, so that information was being collected systematically even if not in a controlled trial to figure out what was fully going on.
  4. Gynecologists and other clinicians are not systematically equipped with the kinds of specific, up-to-the-minute information they could use to talk to PWM who raise these concerns, nor necessarily with the soft skills to acknowledge patient’s experience and dignity before explaining how one thing can be affected without affecting the other.
  5. Gynecologists and other clinicians may not be certain on whether and how to discuss these symptoms with their patients before they make their vaccination decision, nor is part of the (rare) education that happens when you actually go to get your shot (for the love, claim back those 15-minute post-shot observation periods to do some serious vaccine literacy work and turn the recently-vaccinated into more informed people who are better equipped to become vaccine ambassadors!!!).

There is a real empirical question here that should be researched: what do patients want to know? For example, I have been having an interesting conversation with an awesome practicing- and research-doing gynecologist, who writes, “Educating women that it could happen would have helped a lot! And yet, as a gynecologist, I don’t want any of my patients to think I’m telling them that it will cause infertility or basically give them any reason to think I’m questioning that it is absolutely the right thing to do right now due to a novel virus that might kill us [and itself cause fertility issues] rather than maybe throw off fertility.”

These are reasonable concerns and it may be that for different patients, different up-front information will have different effects. What else could we be asking or doing in waiting rooms to better understand this and tailor the patient experience accordingly? What soft skills, pieces of information, and teaching and learning materials do clinicians wish they had?

In all the many COVID mis- and disinformation studies out there, I have yet to see solid ideas with solid research designs about how clinicians and patients can better communicate about this kind of tough stuff, facilitating decisions consistent with personal and public health now–but also deeper trust going forward. I have not seen fertility-related facts at the forefront of any conversations, overshadowed by more sensational misinformation. Fertility concerns (and concerns about government curtailing biological autonomy more generally) are old but that doesn’t mean they aren’t more worrisome than the sexy, hyper-new concerns about microchips.

On a different note… inflammation and mammograms

Holy hell! Did you know this is not the only sex-specific experience that is being largely ignored? Did you know that women who have had lymph node swelling under their armpits post-vax have been worried about breast cancer? Did you know that inflammation post-vax has led to false positives on mammograms but that not all physicians have been equipped to advise their patients about not timing mammograms with the vaccine? The CDC does know this and tucks it away in a paragraph, here. I don’t have energy to get into this now but, again, it seems like opportunities to warn, prebunk, and generally teach people about their bodies have been squandered.

Once again, as I am almost certain Tressie said, we are having a DIY (do-it-yourself) pandemic where clinicians, patients, and everyone else are having to guess, confer with friends, and generally figure things out for ourselves even though the potential for systematic scanning and solutions-generation has been there all along.

Share your thoughts, please! The more minds, the merrier

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