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
“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
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.
“African Americans don’t go to support groups. Black men don’t go to support groups. … I think being a Black man, we don’t want to accept it. We don’t want to look weak.”
“There are … Black support groups out there, and I think it’s important for us to look for something like that.”
“It’s great to get information that’s going to apply to [African Americans]. And you do feel ... I’m not in this alone. And we’re not in this alone.”
“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
The first thing to think about is what you’re looking to get out of a support group, says Kevin Alschuler, PhD, director of rehabilitation research at the Multiple Sclerosis Center at University of Washington Medicine in Seattle. “Are you looking for information or education? Are you looking for social support or for an opportunity to be around people who have lived a day in your shoes?”
Some groups are aimed at specific segments of MS, such as people who are newly diagnosed, younger adults living with MS, or care partners. Other groups may have a subfocus, such as exercising with MS.
“It’s important to know what you’re looking for, to make sure the group you get involved in is one that’s designed to meet your needs,” Dr. Alschuler emphasizes.
MS support groups take place in person, over the phone, or online. You can also find support in less formal formats, such as Facebook groups that don’t meet regularly but offer ongoing comments and conversation.
“When I was diagnosed, support groups were limited to in-person and phone conversations,” says Johnson. “Today with social media, there are more options and access.” Virtual support groups are especially helpful for people who may live in rural areas or somewhere without much representation for people of color, notes Johnson. She recommends these online resources for people of color who are living with MS:
- Facebook: Women of Color with Multiple Sclerosis or We are ILL
- Instagram: lifewithMoyna
- Podcasts: 1 SicB, Real Lyfe Reel Talk with Tyler Campbell, or Brain Chat With the Nerdy Neurologist
Consider whether you value in-person interaction or prefer the flexibility and accessibility of logging in from the comfort of home.
“There is a Facebook group that I belong to, Black Girls Move. We all have MS, all over the country, and we support each other.”
Frequency, Timing, and Length
Another thing to consider is how frequently meetings occur. Some people prefer to get together often, while others benefit from infrequent gatherings.
The timing of meetings and how long they’re scheduled to last are also important to consider, as you need to find a group that works with your schedule.
Think whether you’d feel more comfortable in a small group or the anonymity baked into larger group settings.
“A lot of the value in support groups is being able to relate to the information that you’re receiving,” says Alschuler. “Some people can be with a large, diverse group of people and extract the pieces that are relevant to them. Others feel like they need to be with a small group that’s focused more on people who are similar to them.”
“I went, and it was 55 people…. based on [the information everyone shared], I was able to find my doctor.”
Some support groups are offered by an MS clinic, hospital, or advocacy organization. These are typically run by a medical professional, such as an MS nurse, psychologist, or social worker.
Other support groups are independent. The leader of these types of groups tends to be someone else who is living with and managing MS.
“There might be a person living with MS who is a skilled leader, and that can be an excellent way to go about it,” says Alschuler. But, he notes, remember to consider your purpose for joining a support group. For example, if education is your goal, “You might look for one that is attached to an MS center or one that routinely brings in professionals to speak about elements of living with MS.”
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.
“When I first went to my group, I was the only Black person…later on, I saw more of me, and [started] understanding I wasn’t alone.”
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.”