Community Spotlight: Interview with Ebony Capers
Ebony Capers is an MS warrior and founder of the Facebook group Women of Color with Multiple Sclerosis. Ebony was diagnosed with MS in 2011 and quickly realized that there was not a space where she felt she could go to be around other women of color who were going through the same experiences she was. This realization fueled Ebony’s passion for advocacy and the desire to create a safe space for women of color to join and feel seen and heard in a safe and supportive environment.
The importance of MS advocacy
We had the honor and opportunity to interview Ebony about what her journey with MS has been like, why starting this group was so important to her, and what having it means to her and all the women of color within the MS community.
Ebony, can you tell us about yourself and when you were diagnosed with MS?
For sure! My name is Ebony Capers, and I was born and raised in Atlanta! I love people and cooking! I am 33 years young, and I naturally and authentically love helping. I usually work with children and families as a nanny and on the side, I LOVE cooking for people. I occasionally still cater small, intimate events. When I’m not working with regular folks, I’m relaying, relating, and releasing with some real-life superheroes, AKA Women of Color with Multiple Sclerosis.
I was diagnosed with MS in 2011 after an extremely stressful job triggered some headaches I’d experienced some years back. My cousin referred me to a neuro-ophthalmologist, who ran a series of tests that discovered MS, and there began my journey with MS.
What has your experience with MS as a woman of color been like?
Honestly, it’s been tricky in some aspects. I feel like I’ve had a more difficult time receiving the treatment and help that I need...like I dang near have to semi-threaten my doctors to receive the treatment I both need and deserve. I have to advocate even more for myself because not only am I a woman of color with MS, BUT I am a woman of color with MS whose symptoms you cannot see, and that can be soooo very frustrating a lot of times. This is why I do what I do.
You seem to have created a really safe and open space with your Women Of Color with Multiple Sclerosis Facebook Group. What made you jump into advocacy, and what has this page meant for you?
Well, simply put, I started doing what I do because it was not being done. There was absolutely NO space for minority women on Facebook or Instagram. I initially started on Instagram at @GreaterThanMS with the mission of connecting as many nearby MS family members as possible in *each* of the 50 states. But that wasn’t enough, personally. I needed MS sister-friends who not only could relate to my challenges and talk about the dooms and glooms of MS constantly, but also didn’t want to give up on life. I sought belonging and understanding, also. I started WOC with about 5 sisters, and to date, there are over 2,200 women that make up our group! I’m so grateful and blessed.
What piece of advice do you have for women of color with multiple sclerosis?
Stay the course. Don’t EVER give up, and remind yourself that this too shall pass. RIDE those waves ... they will eventually calm. YOU are your best advocate and YOU know your body the best. You’ve completely got this if you stay proactive and aware. Link up with a GOOD, uplifting, and authentic support group, and you will be OKAY!
You fill so many women’s emotional tanks with your uplifting page and support. How do you fill up your own tank?
THIS! This is filling my tank. Helping others. Ensuring others are well. Making sure my people are good and getting what they need and deserve. I SINCERELY, without a DOUBT, LOVE to be of assistance. I’ve not quite been able to become the “certified” world-renowned chef...YET, but I am able to be a source of encouragement as well as receive the same from my MS sista-friends such as Treva (WA) or Tracy (CA), and LOVE my side-bursting laugh sessions with Tiffany (TX) and my early-am catch-up sessions with Tiffany M. (MO). Because of the pandemic, I’ve had to become creative in how we “get together.” Here in Atlanta, we loved meeting for brunch or even at a sister’s home. But nowadays, we use Zoom and have Girls’ Nights. We had a New Year’s party complete with Secret Santa. I try to have at least 1 full support group meeting 1 Sunday out of the month.
If I was forced to choose self-care for a week though, I would go to the beach, nap, take myself to dinner, and write!
How do you feel before getting an MRI done?