099: ENDO Black Founder Lauren Kornegay

Uninvisible Pod with Lauren Freedman

When she first met her new gynecologist, Lauren R. Kornegay was introduced to a disorder that was unfamiliar to her at the time: endometriosis. Diagnosed at the age of 20, she experienced the pain, struggles, exhaustion, and confusion that accompany the disease. This led her on a search to find someone who looked like her — who was also living with the same diagnosis. Each time, she came up empty-handed. Due to a lack of representation and acknowledgement of Black women affected by endometriosis, she felt entirely alone. She found herself in support groups being dismissed, accused of being racist, or chastised for speaking up about the lack of awareness of anyone who didn’t resemble the primary demographic of the disease (ahem, white women). In 2015, in direct response to these experiences, she created her own community: ENDO Black, a platform designed to connect women of color affected by endometriosis, bringing them together to heal and advocate. Her goal is not only to give women of color living with endometriosis a network, but also to raise awareness among doctors and other medical professionals of the lack of representation in reproductive health research and dialogues…so they can begin to (finally) understand that endometriosis affects women of color differently — from both a medical and cultural perspective. Lauren is also a founding member of the LOLA Collective and has recently become one of the co-founders of the Black Women’s Health Coalition.

Tune in as Lauren shares:

• that her gynecologist first discovered she has a tilted uterus — a common trait often associated with endometriosis
• that she was diagnosed with endometriosis in 2011
• that she manages endo with lifestyle and diet changes, but still lives with chronic pain, nausea, allergies, and brain fog
• the importance of advocating for oneself when it comes to healthcare
• why self-advocacy is harder as a Black woman — because of prejudice associated with the trope of the “angry Black woman”
• how her symptoms have changed over time
• that endometriosis is a multi-systemic disease
• how her diagnosis has affected her relationships
• how she practices self-care
• why it’s important to be organized when you live with a chronic illness
• her experience of medical and systemic racism, especially in relation to women’s health
• why she founded ENDO Black: because she couldn’t find other Black women living with endometriosis
• about the Black Women’s Health Coalition

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