What We Lose in the Endo Community When the Most Privileged Voices Are the Loudest

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Culture & Conversation Sexual Health

What We Lose in the Endo Community When the Most Privileged Voices Are the Loudest

Rewire News Group Staff

While endo communities and support groups can help patients feel less alone, the most vulnerable and marginalized are being left to fend for themselves.

For more on endometriosis, check out our special report.

Proper care for endometriosis, which affects millions of people, is hard to come by—and community is too. Online support groups attract tens of thousands of patients seeking answers and a place to vent about endo, a chronic reproductive health condition where tissue similar to the uterine lining grows elsewhere in the body, causing symptoms such as chronic pain, infertility, and organ dysfunction.

Then there are prominent endometriosis patients: celebrities and influencers who build their brands around their lives with this disease, some of whom tout treatments and diets that “cured” them.

Underneath this veneer lies a community fracturing at its base, leaving the most vulnerable and marginalized patients to fend for themselves. And despite its clear ties to reproductive justice values, endometriosis remains siloed from other reproductive health-care issues.

Roe is gone. The chaos is just beginning.

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The loudest voices in the room

An endometriosis diagnosis is a lonely thing to get; when I got mine, I had been screaming into the void about my symptoms for ten-plus years. At the same time, I’d been quietly navigating how to speak about my pelvic pain, painful sex, gastro problems—all in a world that treats reproductive health as something unspeakable.

It’s a pain that already feels isolating and shameful, and when you eventually have a name for it, you somehow feel even more alone.

When you do mention endometriosis, it seems like everyone—your middle-school teacher you run into at the grocery store, your dental hygienist, your second cousin—knows someone with endometriosis, and they’re ready to give you advice and tell you how you could be doing better at managing your own disease.

If they don’t know someone personally, they know a celebrity with endo, usually Lena Dunham. Providers funnel you into support groups; they direct you to online and in-person communities where you’re supposed to find comfort and solidarity. Your suggested Instagram follows become a selection of young women with perfectly coiffed hair wearing pastel yoga pants and matching sports bras, with yellow ribbons and heart emojis in their bios. They’re your “endo sisters.” They post about overcoming the pain, and share tips and tricks for regulating your diet and managing your inflammation and the yoga routines that work best for their pelvic tension.

And sometimes this form of community helps. Someone might share the name of their doctor or a pelvic floor physical therapy stretch that ends up working for you. But the anesthetized aesthetic endo “influencers’’ adopt may be foreign to the day to day of your life. Hidden behind their perfectly curated feed that shows them enjoying life in ways you can’t even imagine is a trust fund, or a wealthy spouse, or a six-figure job footing the bill for care that is overwhelmingly cost-prohibitive. In a true snake-eating-its-own-tail phenomenon, the most prominent voices in the endometriosis community are those with the resources to experience relief from this debilitating disease—namely white, cis, thin women whose reality is largely detatched from that of the majority of people living with endometriosis.

Lara Parker, 30, a friend of mine who wrote a book about endo called Vagina Problems, said she used to follow more endometriosis accounts on social media but “had to mostly unfollow [them] because it was triggering for me to feel like the way I chose to handle my own disease was wrong. And they were mostly white [and] cis.”

Parker said she basically diagnosed herself after years of being told by providers it was all in her head. She said the public representation of endometriosis and the most prominent voices in the community don’t reflect the people living with the disease.

“I think it focuses solely on people who can access treatment, and specifically excision surgery as a treatment. If you can’t do that, you’re sort of shunned from the community or made to feel less than, in my experience. Like you’re not trying hard enough,” Parker said.

“I once witnessed a support-group leader encourage a woman to mortgage her home and give up the trip to Disney with her family to ‘sacrifice’ in favor of her health. I just find that type of conversation to be really damaging.”

The dark side of support groups

Parker manages her endometriosis symptoms with medical marijuana, a decision that has made her the target of judgmental comments in support groups—which, as a result, she mostly avoids these days.

“I have been called a drug addict or told that approaching my pain management in this way is somehow wrong,” she said. “It was disappointing to feel exiled from a community that I am inherently part of because I was born with a disease in my abdomen.”

Parker also noted that sometimes it feels like endometriosis patients turn inward the ableism and judgment we get from the outside world.

“The pressure from society and countless doctors always telling this community that we’re doing everything wrong can be projected onto others,” Parker said. “I know I have, unfortunately, done this in the past myself—dealing with this on a daily basis is torture, and sometimes it does get the best of us in how we interact with others.”

This culture of exclusion and judgment permeates the interpersonal dynamics of the endometriosis community. This is especially true for patients of color, who often find themselves being talked down to by white women who erase the myriad ways that women of color experience medical racism in seeking an endometriosis diagnosis.

Neve Brown, 21, is a mixed-race queer woman living with endometriosis as well as other chronic illnesses. She said she was met with anything but support when she announced in her online support group her decision to have a hysterectomy to treat adenomyosis.

“​​In my Facebook groups, the night before my hysterectomy … I had a little hysterectomy party. I posted a picture, and I was like, I’m so excited. And there were still people who were like, you’re too young,” Brown said. “And I was like, the fact that you’ve been through this and you have the nerve to tell me … People are obsessed with telling me I’ll regret it. Obsessed.”

Brown said that being a woman of color compounds the derision she feels from community members. For example, she said that while she’s seen support for patients who prefer a doctor who’s a woman, the same understanding is not extended to patients who want to be treated by a doctor of color. And white peers are quick to make her feel like their endometriosis diagnosis levels the playing field—that it means their suffering or marginalization is on par with that of people of color.

“​​I’m sick of having these experiences equated because it’s so hard to be diagnosed in the first place,” Brown said. “A lot of white women are very eager to talk over that experience and be like, ‘Oh no, that’s not because you’re a person of color. That’s just because it’s hard to be taken seriously when you have endometriosis.’ And that’s true. It’s hard to be taken seriously. But it’s a lot harder when you’re already a marginalized person. When you’re a queer person or you’re a person of color, it’s much, much harder because you have all those stereotypes against you too.”

For better or worse, these support groups are a lifeline for endometriosis patients, the main source for lists of vetted doctors and access to other patient-centric materials. So what does it mean when those singular resources are inhospitable to marginalized patients?

There aren’t a lot of voices of color in these support groups, Brown said, because they don’t feel welcome. In the past, when she’s spoken about her experiences as a woman of color with endometriosis, she’s been cast as combative and spoken down to.

“They’re like, women need to support women. You just need to be kind. Women need to support women,” she said. “And I’m like, you’re just using that to evade accountability.”

And although groups that center women of color, like Endo Black, do exist and provide critical resources for endometriosis patients of color, they don’t have the same visibility and support in the endometriosis space as white-led groups.

“Starting Endo Black came from the lack of representation for African American women,” said Endo Black founder Lauren Renee Kornegay, 33. “I had done some research and joined a couple of support groups on Facebook, and after a while, I recognized that I was one of the few African American women in the group. There was a lack of women of color in the group. That didn’t sit right with me, so I asked about it and received a lot of negative feedback.”

Endo Black has grown significantly since it was founded in 2015. Kornegay said her community is well-respected, which she credits to the authenticity they bring to the movement. Still, the experiences aren’t all good.

“We’ve had people attack us on our social media,” Kornegay said. “We’ve had people attack allies for sharing information on racial disparity. We’ve even had organizations reach out to us to be their token organization, to say they supported us when all they wanted was to have a ’black friend’ to gain more traction with their organization.”

A lack of queer representation exists, too. “Representation is limited to the idea that endometriosis affects [cisgender] straight women,” said Eve, who’s in her mid-30s. “There’s a huge lack of representation for POC and LGBTQIA individuals. I don’t remember the last time I saw support in mainstream media for gay or trans individuals with endometriosis. This disease doesn’t discriminate, but somehow our media perpetually discriminates by only showing one side of the community.”

Eve said the ways in which conversations about endo still use gendered language perpetuates this discrimination, but when she raises this point in support groups, she’s met with hostility.

“If you speak up about gendered language in any large Facebook group,” she said, “your comment will be replied to with ‘laugh’ or ‘anger’ emoji reactions, and people will try to correct you that endo is a ‘woman’s’ disease.”

A reproductive justice issue

Medical racism accounts for massive disparities in reproductive health care, and endometriosis is no exception.

It takes an average of ten years to receive an endometriosis diagnosis—for a white woman. For Black women, a diagnosis can take up to 15 years. Black women are less likely to have their pain believed and to be provided with proper pain management.

The medical community also devalues the reproductive health and fertility of Black women, and it’s no secret that modern gynecology was built on the backs of the Black women forced into medical experiments. That same culture of eugenics remains and is easily seen in both maternal mortality rates as well as treatments, the latter regarding access to long-acting reversible contraceptivss and hysterectomies and other forms of sterilization, which statistically are more likely to be recommended to patients of color.

Endometriosis care is not unlike abortion care or other forms of reproductive health care. It is often most accessible to the most privileged. Care often requires travel, financial resources, and familial or community support.

Brown had a hysterectomy last year to cure her adenomyosis, a condition where disease grows in the lining of the uterus. (Notably, a hysterectomy is not a cure for endometriosis, which by definition occurs outside the uterus.) Brown said she was put through immense scrutiny to have a hysterectomy at her age, despite being in daily, debilitating pain and unable to maintain any quality of life, including months of hormonal treatments and pain medication. Still, she said she wonders how medical racism impacts the way providers dole out this kind of care.

“It’s interesting to me, also, the way that narratives change [with a hysterectomy] depending on the patient’s race,” Brown said. “Because I feel like a lot of women of color—[that doctors are] very eager to sterilize. A little too eager to sterilize.”

Endometriosis care is prohibitively expensive. Thanks to a long-standing insurance-coding system, excision surgery—the gold standard in endometriosis care—is coded the same way as laser or ablation surgery, which requires significantly less skill. This means that providers are undercompensated for the amount of expertise proper care requires. Providers who charge patients $6,000 to $10,000 out of pocket for care are considered reasonable, and it’s not uncommon for an excision surgery to cost up to $30,000—and that doesn’t include the costs of traveling to see these specialists. The political culture of providers who make a living charging patients such rates also makes for a toxic community.

Last year, Parker spoke out about a top doctor whose tens of thousands of dollars in donations to conservative political candidates she uncovered—and the community essentially blacklisted her.

“I found out that a prominent surgeon had donated thousands of dollars to right-wing politicians who advocated for the end of Roe v. Wade and actively contributed to the harming of marginalized communities, so I shared this information because I thought it was crucial for our community to know,” Parker said. “Instead of feeling like I was a part of a community on the same side, I was exiled and told I was not a part of the community. We uphold doctors over actual patients.”

Endometriosis care is not unlike abortion care or other forms of reproductive health care. It is often most accessible to the most privileged. Care often requires travel, financial resources, and familial or community support. It also falls prey to the same sexism and racism that makes all reproductive health care a fraught experience for patients. But a gulf exists between the endometriosis community and the reproductive justice community more broadly.

There are many reasons for this dissonance. People living with infertility often feel cast out by some mainstream abortion discourse, which relies on the notion that abortion does not equal a loss of life, something those experiencing pregnancy loss grapple with in their own way. But it’s those nuances that illustrate how critical it is that abortion is not legislated. These unique and varied pregnancy experiences actually serve to unite these patients in a greater understanding of the importance of keeping the law out of pregnancy and reproductive care.

The endometriosis community needs to look inward. It needs to understand what it means to be inclusive, to serve the most marginalized among us. Brown told me she’s even seen people in support groups express reticence to call themselves disabled, an explicit example of the internalized ableism in these communities.

The way forward

Brown said radical honesty is one way to defy these norms.

“I think the first thing is just being honest about our experiences, being public about them, being honest about what’s happening. Not making up these excuses to make other people more comfortable, and holding space for the way those feelings and experiences are complex,” Brown said.

And Kornegay points out that we’re stronger united.

“I do think it’s important to recognize the strength in numbers,” she said. “The more we support each other, the more people outside the community are prone to support us.”

It’s impossible to lay out a precise road map of fixing these flaws in the community. The toxicity is both systemic and interpersonal. Parker said recognizing the privilege that comes with accessing care in the first place is critical. Brown added that movement leaders and members alike need to accept the reality that, while we all live with the same disease, we experience it differently—and our experiences are informed by things like race, age, and additional disabilities.

Until then, the community needs to grapple with how it inflicts the very harms we seek shelter from when huddling with one another upon the most marginalized among us.

“It’s violent the way that they treat people. It’s violent,” Brown said.

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endometriosis