Race and Endometriosis: The Equality Gap
On the same day that George Floyd was killed and some angry white woman in the New York called the cops on a black bird watcher, I think we all watched truly appalled. How is this still happening?? Initially we saw anger pour over, a few riots were seen, but mainly we saw (and were able to participate in) enormous swaths of peaceful protests nationwide. It was beautifully organized, there was incredible leadership, stirring words, and most importantly a new future began to emerge. One where we stopped saying “how is this still happening” and started saying “oh, I understand how it’s still happening, and we’re all going to work together - now - to end it”.
Speaking specifically to endometriosis, it’s important everyone should care about this. It’s estimated that 1 in 10 women have endometriosis, but there has never been a study examining the rate within black populations. Because people of color are more likely to be medically discriminated against (in just about every way), this specific community is more at risk overall for chronic disease. Black women are less likely to have their pain taken seriously, be prescribed pain killers, or be recommended to see specialists. They are more likely to die in childbirth, be recommended hysterectomies, and have birth complications. They’re more likely to have diabetes, hypertension, and asthma. That means they may be much more likely to have endometriosis, and they definitely are much more likely to be misdiagnosed, under diagnosed, or ignored.
So the big question amongst many holistic health practitioners in the endo field (me) is": what can we do to help this situation? I’ve been really reeling with this question over the past 3 weeks, as most holistic health professionals can’t legally diagnose or treat a disease, what could we be doing differently that would help supporting the black community to get equal care?
To find out, I reached out to a multitude of women of color: Former clients, colleagues, and some of whom I didn’t know personally but I know worked in the field. What I heard back was positive, constructive, and helpful. These are some of the recommendations they had for me, based on their experiences in holistic health:
Help clients of color seek second opinions: a number of former clients spoke to the fact that they had their concerns brushed off initially, and never sought second opinions because of this. This would be like someone telling you that you definitely did not have endometriosis even though your pelvic pain was excruciating, so you stopped looking down that avenue and looked elsewhere - missing an endometriosis diagnosis for years to come. If you have a black client with symptoms of something that doesn’t line up with a dismissal they had earlier, help support them in seeking a second diagnosis.
Remember that endometriosis is a social justice issue in many ways: you as a patient are basically required to know more about the disease than your doctor, so you can advocate on your behalf. If you don’t have access to information about the disease, your situation may get increasingly worse. To this extent, do everything possible to educate about the disease, the importance of diagnosis, and how systemic racism can be an enormous barricade to proper care. The more we simply talk about this, the more change can (hopefully) come.
Don’t just “vibe with your tribe”: This was advice from a colleague who believes that, because of the basics of marketing, many black women are left out of the nutrition loop. There’s a statistic that something like 94% of holistic health professionals are white women, and when the majority of those women are told to only market to their “tribe” when getting clients, it’s easy to see how black communities may entirely be left out. Not okay. Her advice was to reach out of your tribe and “across the aisle” - instead of doing talks at your local health food store, do one at a supermarket in a community of color. Instead of writing another blog for your site, reach out and be a guest blogger on a predominately black site.
And vise versa! Invite black and brown women into your tribe, to guest blog on your site, and to present at your local health food store. Not only does this foster cross-aisle communication, but also offers increased opportunities to black women who may not be offered the same opportunities for upward mobility in the health world
Help interpret the science: I heard that some of the posts I’ve done about specifics of race and nutrition have been impactful, such as darker skinned folk needing more vitamin D, or having more of a hormonal reaction to caffeine that people of European ancestry. So in this instance, keep educating about specifics people of color should be aware of (that no doctor has told them) so they can be their own best patient advocate.
Direct endo sufferers to Endo Black: a nonprofit dedicated to supporting women of color in everything endometriosis. Supportive communities can make the difference between resilience and hopelessness.
Heal Endo is not about a single person. It’s about endometriosis and everyone that suffers from it. From Christian to islamic women, transgender womxn, black, brown, white, and everyone in between. It’s a philosophy based on the premise that we can heal our cells in pretty cool ways. But, more importantly, it’s part of the world-renowned-for-incredible-strength Endo Community, and we are all in this together.
