MS Support Groups: Black Representation Matters

A support group is a valuable source of community and can help you feel less alone with MS — especially when you’re able to connect with others who share similar experiences.

MS Support Groups: Black Representation Matters

Joining a support group, especially one with other people who look like you, can help you feel less alone with MS.
MS Support Groups: Black Representation Matters

Medically Reviewed

“You should join a support group.”

This is common advice for people living with multiple sclerosis (MS) — and for good reason: The benefits of interacting with others who are facing the same challenges of living with a chronic, debilitating disease are seemingly endless.

If you have MS, a support group can help you:

  • Learn and share information about the disease
  • Find strategies for troubleshooting
  • Connect with others who understand what you’re going through
  • Become empowered to live life to the fullest
There’s a wealth of MS support groups to choose from, so choosing the right one for you may feel overwhelming. But with careful consideration, you’ll be able to home in on one where you feel comfortable.

Lack of Representation in MS

Black people are known to be underrepresented in MS research. However, one factor that’s less discussed is how the Black community is also underrepresented in MS support groups.

“Black representation is important not only in MS research, but also when it comes to joining support groups and connecting with others who not only look like you, but also share your unique experiences as a Black person living with MS,” says Ann Marie Johnson, who was diagnosed with MS in 2002 and is a support group leader for the National MS Society’s online group Black Voices.

When you attend a support group, regardless of your race or ethnicity, it’s important to feel like your voice and experiences are represented in the discussion. If you’ve attended a group where you’re the only person of color, you may find value seeking out groups specifically designed to create community for and provide information about the Black experience with MS.

“As a person of color, having a place where you can truly be understood — among those who ‘get’ you, your culture, and your needs is important,” emphasizes Johnson. “Having a space where we can talk about challenges and frustrations — coping with family matters, employment or lack thereof, and prejudice moments or lack of diversity — without explanation or judgment brings an extra layer of support that has been so helpful in my MS journey. Support groups with Black representation offer a safe place to be unapologetically you — what you feel, what you are going through. It’s emotionally, intellectually, and spiritually liberating.”

When it comes to MS support groups, compatibility matters. With careful consideration, and some trial-and-error, you’ll be able to home in on one where you feel comfortable.

What to Consider When Choosing an MS Support Group

These factors are key to think about when deciding which type of group is best for you.

Shop Around for Your MS Support Group

Once you’ve identified a support group you’d like to join, the next step is attending a meeting.

It’s kind of like a dating app experience, says Alschuler. “You can’t just know from what you see in a description or advertisement. You have to go, you have to see how things feel, and if it feels right for you,” he explains.

Doing so can give you a better sense of the vibe and whether or not it’s a good match. It can also help you know for sure if there are other attendees in the room that look like you and share similar experiences.

Remember: Showing up to a group doesn’t mean you need to make a commitment. Give a group a try, if it resonates, go again. If it doesn’t, try another group.

“In time, you will find your tribe and develop a network that can span across your immediate community to far beyond,” adds Johnson. “In time, you will feel a sense of community from your MS family.”