I was in middle school when I first experiencedhidradenitis suppurativa(HS).
I received several rounds of misinformed medical advice and misdiagnoses.
One doctor told me I needed sweat gland surgery.
Photo courtesy of Jasmine Espy / Designed by Julie Bang / Verywell
Another doctor said I had a rare blood disease and told me I had a few months to live.
My intuition told me this was a dermatological condition.
I still got boils, oozed puss, andsmelled awful.
I felt forever sick.
Living With HS
I hated being me as a child.
In middle school, a boil in my armpit burst.
When I raised my hand, a classmate pointed out that I had blood all over my arm.Everyone gasped.
Similar to the antibiotics, it didnt work.
Before HS, I was an extrovert with a lot of friends.
I had no concept of beauty standards.
After HS, I became self-aware in an awful way.
I was 5 feet, 9 inches; 350 pounds; and dark-skinned.
I was anxious to be around people.
It seemed like society had a certain standard for bigger womendeeming them sexy or curvybut I was not that.
Food was the one thing getting me through the day, the only comfort I had.
I decided I would rather die frolicking in flowers than lying sick in a hospital bed.
Seeing him care for himself inspired me to reexamine my diet.
Slowly, I was experiencing fewer flares.
Then, I watched a documentary,What the Health, which discusses the relationship between food and health.
Deciding to Get Surgery
I returned to Dr. Hamzavi to see if any newHS treatmentswere available.
I was ready to try it.
He referred me to a urologist who could perform a scalpel surgery.
I ignored the red flags.
I rushed into the surgery because I wanted to feel confident dating and, eventually, having sex.
Unlike the other surgeries, though, this one was botched and mutilated my genitals.
Dr. Hamzavi introduced me to Erin Martinez, a social worker specializing in treating HS patients.
Together, they saved my life.
Martinez urged me to get active in the HS community and join support groups.
If you or a loved one are in immediate danger, call911.
I wanted to elevate Black women’s stories.
Writing, producing, and editing the documentary forced me to process everything that had happened to me.
When I finished the documentary, I had screenings in Los Angeles and in my hometown, Detroit.
I even spoke with the HS Foundation about screening my documentary in festivals.
I used that metaphor to speak about HS.
I even found a local Kintsugi master and planned to host wellness retreats for women.
Then the pandemic came, and everything came to a halt.
My health declined and the stress of the pandemic caused my HS to worsen.
In my loneliness, I started posting a lot on social media and sharing my story.
I registeredMy Gold Lining, LLC,as a nonprofit and practiced advocacy awareness full-time.
My work focuses on creating videos to help elevate the stories of HS patients and others with chronic illnesses.
Moving Onward
Id love for people living with chronic diseases to know that things can get better.
Hope is sometimes all we have.
Finding an outlet and giving back has kept me here.
Art and advocacy work saved my life.
While it may feel insurmountable to tackle HS, taking small steps toward healing can help.
American Academy of Dermatology Association.Hidradenitis suppurativa: signs and symptoms.
Published 2022 Nov 15. doi:10.1016/j.jdin.2022.11.003
National Library of Medicine.Hidradenitis suppurativa.
University of Minnesota.Food as medicine.
Henry Ford Health.CO2 laser surgical excision for hidradenitis suppurativa.
Shukla R, Karagaiah P, Patil A, et al.Surgical treatment in hidradenitis suppurativa.J Clin Med.
2022;11(9):2311.
Published 2022 Apr 21. doi:10.3390/jcm11092311
