'People are comfortable with women suffering'

Menopause and perimenopause are grossly under-researched — especially for people of color

Almost as soon as I started reporting for this newsletter, a major theme began to emerge: We just don’t know that much about menopause.

Menopause and perimenopause are grossly under-researched, and there’s a huge gap between hunger for real, evidence-based information and what we know right now.

And I know from my past two decades reporting on both reproductive health and American politics that when disparities exist, they usually quickly compound.

Cue the expert

That’s why I wanted to talk to Tené Lewis, a professor at Emory University’s Rollins School of Health. Her work has examined how social factors can impact Black women’s health outcomes, particularly in regard to their cardiovascular health.

She also worked on the Studying Women’s Health Across the Nation (SWAN) Study that was published in the late 90s and early 2000s, the first multi-site, longitudinal study of women in menopause in the United States. Lewis researched the impact of everyday discrimination and coronary artery calcification in middle-aged Black women.

“100 percent of all women will go through menopause — that’s half the population in the world. But yet, we know very, very little about it,” Lewis said.

She recalls telling peers at the beginning of her academic career that she was joining a first-of-its kind study on menopause — and being asked why she wanted to spend her time investigating “something that just happens.”

Research and what we value

“There are very few areas of research where there is a 20-year knowledge gap,” Lewis said, pointing to the lack of large-scale studies on menopause that have occurred since the late 1990s. It’s something she thinks is indicative of not just where science’s priorities are, but contemporary culture’s.

“People are comfortable with women suffering.”

Lewis said she thinks this dynamic speaks to a bias that comes with menopause. “Women’s value in society is really viewed in terms of their ability to reproduce, and once that sort of ends, it’s almost as if it’s like, ‘OK, nothing more to see here, folks.’ I think when we talk about half the population like that, that’s incredibly problematic.”

And the lack of research, the lack of real information, the lack of care for women’s lived experiences — that can all drive people to really untested, unvetted products marketed as solutions.

All of this in turn can further impact long-term health outcomes.

Black women and heart disease

Right now, Lewis is studying women who have had heart attacks before the age of 60, who are disproportionately African-American.

As a result of having experienced heart attacks younger, “they’re sicker, they’re more at risk for another heart attack, they’re at higher risk of heart failure and all sorts of other complications,” Lewis said.

“People didn’t realize that the number of [menopause] symptoms that you have are directly correlated to things that will happen to your health later in life, and we need to understand those linkages,” Lewis said. “There’s also this real intersection between menopause, heart disease and race — Black women are more impacted by both of those things, but because there’s been so little work in this area, we don’t really understand why that is, what that’s about, and what can be done to prevent it.”

We know from the limited research we do have that Black people experience more symptoms throughout perimenopause and menopause than other demographics.

As I mentioned in our edition on night sweats, Black women have the longest duration of vasomotor symptoms, aka hot flashes and night sweats, of any demographic — on average, they experience these symptoms for 11 years, compared with seven years for White women.

Research has found that vasomotor symptoms have been tied to cardiovascular disease risk and that these symptoms may be an indicator of degrading cardiovascular health in women, but, Lewis said, “we know very, very little about why it is that Black women are at a greater risk.”

She said a few markers, like arterial stiffening, increase during menopause for Black women compared with White women. But right now, we just don’t know why — and are sorely lacking in the research needed to help distinguish in which way sociological factors, like systemic racism and discrimination, are contributing to these health outcomes.

Black women are also at higher risk of hypertension, which contributes to higher rates of stroke, kidney disease and Alzheimer’s disease — all things that impact, as Lewis said, not only someone’s lifespan, but their healthspan.

“You can be living but your quality of life is drastically impaired because you are managing multiple chronic illnesses or because you’re ill and you just can’t do all the things that you’d like to do — and that’s in addition to just having your life cut short.”

Given that heart disease is the No. 1 cause of death for women in the United States — and that heart disease is more prevalent in women after menopause and that Black women are more likely to develop and die from heart disease than any other group of women in America — the lack of research is stark.

And it’s not just Black women who suffer from the lack of research.

There’s some research that shows Asian women in both the United States and Asia have fewer vasomotor symptoms than White and Black women, but not a lot else is known, Lewis said.

And we know very little about Latinas and their experiences with vasomotor symptoms.

Research is also scarce on how symptoms are experienced by nonbinary folks and any differences that exist within the queer community. Again — there’s just a real lack of research, Lewis said.

Lifelong impacts

How much we don’t know has real consequences, too.

In her own life, Lewis said, she sees many educated people turning to supplements, laser treatments, and other non-FDA-approved methods for managing menopause symptoms. Many understand the importance of science — but also are trying to figure out the disconnect that exists between where science is today and their own lives.

“Menopause is expensive,” Lewis said. “We’re talking about millions of dollars a year in lost wages because women can’t go to work because of their symptoms. We all pay in terms of people not being in the workforce when we lose brilliant minds because they can’t get to work because they’re having symptoms. … It’s not just the individuals who suffer, but their families suffer, the community suffers. Everyone suffers.”

Lewis said she often hears people dismiss menopause and physical symptoms, waving them away: It ends, eventually, so how bad can it be?

“It’s not just something that people ‘go through.’ It is incredibly unpleasant — but it also leads to heart disease and stroke, can lead to Alzheimer’s disease. It’s not like you go through it, you’re great, you’re fine — you develop symptoms that can cause problems for you in your 70s and 80s. They can lead to health outcomes that can end your life. It’s not just a thing that happens and everyone is just glad that it’s over,” Lewis said.

Which leads us back to what exactly happens when there simply isn’t enough research. As Lewis said, right now we don’t really know enough to effectively advise women on what can be done during midlife that can help protect their health as they get older.

“The scientific community has done the population a disservice because women are dying and women are suffering and we don’t know why.”

But Lewis is one person trying to change that. It’s why she’s currently researching how “cost of caring” stressors impact women’s cardiovascular health in midlife right now.

In working on this newsletter, I find myself constantly filled with a kind of (righteous?) rage — I can’t help but think about how many people’s lives and health have been impacted by the lack of money and energy that goes toward investigating menopause.

But talking to Lewis also energized me — here is this researcher who for decades has committed to looking just where others told her there is no point in bothering to look. There are people demanding answers — and bit by bit making important strides in figuring out all the factors that impact what the second half of our lives look like. And literally — literally! — every single time I talk to one of these people, I’m able to reshape that rage into hope.

I almost forgot

I just finished watching the ninth season of “Love is Blind,” set in Denver, and to say that I have some concerns about what it means to date in your 20s and 30s right now is an understatement.

Which is why I have a modest proposal for Netflix: Let’s try this with all people 40 and up next time.

As someone who consumes a lot of reality TV, I think there’s a real opportunity here: Too many of this current cast were just definitely not ready for marriage and someone needed to tell them that it is more than fine to not be in that phase of life yet!

This wouldn’t be like the sheer mess of “The Golden Bachelor” and its repeat senior bachelors who seem to be looking for fame and a much younger partner in equal measure. I would love to see what a bigger pool of people who have had some ups and downs in life and want marriage now look like in the context of this “experiment.”

These shows don’t have to have just grandparents as cast members when they want to think about diversifying — let’s see someone talking about their hormonal swings and night sweats in the pods. Let’s see someone talking about being at the peak of their career and also grappling with their own fertility. Let’s see someone talk about how going to Lilith Fair changed their life.

I — and my group chat — would most certainly watch.