ARTICLEMS

4 Ways to Connect with the MS Community

By Erica Patino

November 21, 2022

In the United States, nearly 1 million people over the age of 18 live with multiple sclerosis (MS). That may seem like a lot, but it’s less than 1% of the population. That means that it can be relatively rare to meet other people who share the same experience as you.

For that reason, learning that you have MS can be an isolating experience. “When I was first diagnosed, I realized, ‘I don't know anybody with this,’” says Jennifer Graves, 39, of Gilbert, Arizona, who was diagnosed with relapsing-remitting MS, the most common type of MS, in 2020. Her experience is not unique—a survey from the Multiple Sclerosis Society found that 3 out of 5 people with MS feel lonely because of their condition.

However, finding and maintaining social connections can help keep loneliness at bay. “It’s especially [helpful] in the very beginning to build a small group of people or to find somewhere that you can go to when you're having a rough go of it,” Jennifer says.

And while it’s important to have support in general, connecting with other people with MS can be particularly beneficial to living with this chronic disease.

“In the case of MS, especially when you're new to it, it's very scary, and you don't know what to expect,” says Barbara Giesser, M.D., a board-certified neurologist and MS specialist at Pacific Neuroscience Institute at Providence Saint John’s Health Center in Santa Monica, California. “So, talking to people who have experienced what you're experiencing is often very helpful and sometimes reassuring.”

Fortunately, in today's world of virtual access and connection, it's easier than ever before to connect with the MS community, and doing so can be a great emotional boost.

How to Connect with Other People in the MS Community

To connect with others who know what it’s like to live with MS, try these strategies.

1. Take Advantage of MS Organizations

Nonprofit MS groups such as the National Multiple Sclerosis Society (NMSS), MS World, and the Multiple Sclerosis Association of America have great resources, including education and online community forums.

The NMSS also offers MSFriends, a one-on-one support network that connects people with MS by phone to volunteers also living with the condition, as well as local chapters throughout the United States. Use its search function to find a chapter near you that’s putting on local events and programs where you can connect with other people with MS in person.

2. Participate in an MS Event

The NMSS organizes events throughout the United States to raise funds for MS research. Joining the thousands of people who participate in Walk MS every year can be an empowering way to meet other people with multiple sclerosis in your area. Enter your location into the Find Your Walk tool on the NMSS site to find a Walk MS event near you.

If walking isn’t your thing or you’d like other ideas, you can join a Bike MS ride or another fundraising event or volunteer opportunity.

3. Join a Class or Support Group

Some local hospitals and clinics host educational events about MS, which can be excellent ways to learn more about your condition but also can be an avenue to meet other people with similar experiences, Giesser says. Ask your neurologist whether they know of any of these offered near you. They may also be able to tell you whether there are local support groups in your area.

4. Connect with the MS Community Online

There are also many ways to meet people with MS online to find the support and connection you may be searching for. For example, here in our MS community, you can find others sharing their experiences with MS, coupled with expert insights.

“[My friend] connected me to an MS support group called BelongMS, which has been incredibly helpful,” Jennifer says.

Social media sites like Facebook and Instagram have groups and hashtags specific to MS, including a group called MS Focus from the Multiple Sclerosis Foundation. When you search for “MS support groups” on Facebook, you’ll find groups specific to women, people in different age groups, people taking certain medications, and more. On Instagram, the hashtags #BelongMS, #ThisIsMS, #InvisibleDisease, and #MultipleSclerosisWarrior may help you find other people living with the disease who are posting about their experiences.

Your own personal social network may be valuable, as well. “I put on Facebook that I had MS, and that if someone knows anyone with MS, to let me know,” Jennifer says. It turned out that her brother knew a man in the Netherlands who also had the condition, and he contacted Jennifer, as did another friend who keeps her diagnosis private. Both have been able to share valuable information and insights about living with MS.

No matter how you reach out, connecting with other people with MS is worth it. Building your community may reduce feelings of isolation and help you get the support and resources to make living with MS easier.

You May Also Like: