I’m Black. I Have Endometriosis — and Here’s Why My Race Matters

I was in bed, scrolling through Facebook and pressing a heating pad to my torso, when I saw a video with actress Tia Mowry. She was talking about living with endometriosis as a Black woman.

Yes! I thought. It’s hard enough to find someone in the public eye talking about endometriosis. But it’s practically unheard of to get a spotlight on someone who, like me, experiences endometriosis as a Black woman.

Endometriosis — or endo, as some of us like to call it — a condition in which tissue similar to the lining of the uterus grows outside of the uterus, often resulting in chronic pain and other symptoms. It’s not very widely understood, so seeing other people who understand it is like finding gold.

Black women rejoiced in the comments on the post. But a good chunk of white readers said something along the lines of: “Why do you have to make it about race? Endo affects all of us the same way!”

And I bounced back to feeling misunderstood. While we can all relate to each other in many ways, our experiences with endo aren’t all the same. We need space to talk about what we’re dealing with without being criticized for mentioning part of our truth — like race.

If you’re Black with endometriosis, you’re not alone. And if you’re wondering why race matters, here are four answers to the question “Why do you have to make it about race?”

With this knowledge, we might be able to do something to help.

1. Black people are less likely to get our endometriosis diagnosed

I’ve heard countless stories about the fight to get an endo diagnosis. It’s sometimes dismissed as nothing more than a “bad period.”

Laparoscopic surgery is the only way to definitively diagnose endometriosis, but cost and a lack of doctors who are willing or able to perform the surgery can get in the way.

People can begin experiencing symptoms as early as their preteen years, but it takes an average of 8 to 12 years between first feeling the symptoms and getting a diagnosis.

So, when I say that Black patients have an even more difficult time getting a diagnosis, you know it must be bad.

Researchers have done fewer studies on endometriosis among African Americans, so even when symptoms show up the same way as for white patients, doctors misdiagnose the cause more often.

2. Doctors are less likely to believe us about our pain

In general, women’s pain isn’t taken seriously enough — this also affects transgender and nonbinary people assigned female at birth. For centuries, we’ve been haunted by stereotypes about being hysterical or overemotional, and research shows that this affects our medical treatment.

Since endometriosis affects people who were born with a uterus, people often think of it as a “women’s problem,” along with the stereotypes about overreacting.

Now, if we add race to the equation, there’s even more bad news. Studies show that many white doctors see Black patients as less sensitive to pain than white patients, often resulting in inadequate treatment.

Pain is the number one symptom of endometriosis. It can show up as pain during menstruation or any time of the month, as well as during sex, during bowel movements, in the morning, afternoon, during the night…

I could go on, but you probably get the picture: A person with endo could be in pain all the time — take it from me, since I’ve been that person.

If racial bias — even unintentional bias — can lead a doctor to see a Black patient as more impervious to pain, then a Black woman has to face the perception that she’s not hurting so badly, based on her race and her gender.

3. Endometriosis can overlap with other conditions that Black people are more likely to have

Endometriosis doesn’t just show up in isolation from other health conditions. If a person has other diseases, then endo comes along for the ride.

When you consider the other health conditions that disproportionately affect Black women, you can see how this might play out.

Take other aspects of reproductive health, for instance.

Uterine fibroids, which are noncancerous tumors in the uterus, can cause heavy bleeding, pain, problems with urination, and miscarriage, and African American women are three times more likely than women of other races to get them.

Black women are also at higher risk for heart disease, strokes, and diabetes, which often occur together and can have life-threatening results.

Also, mental health issues like depression and anxiety can hit Black women especially hard. It can be difficult to find culturally competent care, to deal with the stigma of mental illness, and to carry the stereotype of being the “Strong Black Woman” along the way.

These conditions may seem unrelated to endometriosis. But when a Black woman faces a higher risk for these conditions plus a smaller chance of an accurate diagnosis, she’s vulnerable to being left struggling with her health without proper treatment.

4. Black people have more limited access to holistic treatments that might help

While there’s no cure for endometriosis, doctors may recommend a variety of treatments from hormonal birth control to excision surgery.

Some also report success with managing symptoms through more holistic and preventive strategies, including anti-inflammatory diets, acupuncture, yoga, and meditation.

The basic idea is that the pain from endometriosis lesions is caused by inflammation. Certain foods and exercises can help reduce inflammation, while stress tends to increase it.

Turning to holistic remedies is easier said than done for many Black folks. For example, despite yoga’s roots in communities of color, wellness spaces like yoga studios don’t often cater to Black practitioners.

Research also shows that poor, predominantly Black neighborhoods have limited access to fresh food, like the fresh berries and vegetables that make up an anti-inflammatory diet.

It’s a big deal that Tia Mowry talks about her diet, and even wrote a cookbook, as a tool for fighting endometriosis. Anything that helps boost awareness of the options for Black patients is a very good thing.

Being able to talk about these issues can help us address them

In an essay for Women’s Health, Mowry said she didn’t know what was going on with her body until she went to an African American specialist. Her diagnosis helped her access options for surgery, manage her symptoms, and overcome challenges with infertility.

The symptoms of endometriosis show up in Black communities every day, but many people — including some who have the symptoms — don’t know what to do about it.

From the research on the intersections between race and endo, here are some ideas:

Create more spaces for talking about endometriosis. We shouldn’t have to be ashamed, and the more we talk about it, the more people can understand how the symptoms might show up in a person of any race.

Challenge racial stereotypes. This includes the supposedly positive ones like the Strong Black Woman. Let us be human beings, and it’ll be more obvious that pain can affect us like human beings, too.

Help increase access to treatment. For example, you could donate to endo research efforts or to causes bringing fresh food into low-income communities.

The more we know about how race affects experiences with endo, the more we can truly understand one another’s journeys.

Maisha Z. Johnson is a writer and advocate for survivors of violence, people of color, and LGBTQ+ communities. She lives with chronic illness and believes in honoring each person’s unique path to healing. Find Maisha on her website, Facebook, andTwitter.

Posted : 2023-12-14 08:56

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