What are MS support groups?

MS support groups are communities of people who come together, either virtually or in-person, to connect and share their experiences and struggles with living with MS. The mission of these communities may vary slightly, but it generally entails sharing resources and coping strategies and providing emotional support and encouragement.

Is a MS support group right for me?

Living with a chronic, unpredictable disease like MS can be isolating. Participating in a support group is one way to see that you are not alone in your experiences and the challenges you face. Besides a social connection, a support group can be a pathway for you to learn more about MS. In addition, support groups can be a source of inspiration. Many people find comfort in helping others and sharing their unique MS struggles. Deciding whether or not to join a support group is a personal choice—and keep in mind, it is not something that is permanent by any means. You can join, leave, and rejoin as you like.

How are MS support groups structured?

MS support groups are generally structured around one or more common goals—for example, to combat isolation, help form friendships, or provide MS education. Online and in-person support groups usually have a leader or moderator to help guide the community and keep them on track with the goal or topic in mind (if applicable). With online groups, the moderator may read messages beforehand to ensure they are appropriate and safe.

The vast majority of MS support groups are free, as are their provided educational resources. Some of the organizations do engage in various fundraising activities to support their cause. Therefore, by joining a support group or subscribing to its website, you may receive emails about participating in a fundraising activity or making a monetary donation to the site, so that they can continue to provide resources for free to those with MS.

7 Multiple Sclerosis (MS) Support Groups

Multiple sclerosis (MS) is a disease of impaired nerve signaling within a person’s brain and spinal cord. The variable symptoms of MS—fatigue, pain, walking difficulties, vision problems, and more—can be socially isolating and interfere with daily functioning.

Support groups are a valuable resource for those living with MS because they connect people with similar experiences, so they do not feel so alone.

Two women holding hands in a support group — SDI Productions / Getty Images

Besides providing social companionship, comfort, and a shared bond, support groups can provide coping strategies for managing the day-to-day struggles of living with MS. They can also help strengthen your overall emotional well-being.

Below we have chosen some MS support groups. These communities will hopefully give you the comfort, information, social interaction, and emotional support you deserve as you navigate your unique MS journey.

National Multiple Sclerosis Society

The National Multiple Sclerosis Society (NMSS) is a prominent organization in MS research, education, and awareness.

NMSS offers a vast network of free, in-person and virtual support groups located throughout the country. Some of these communities target certain populations, like young adults, veterans, or African Americans living with MS, with focuses on learning about the condition, coping with challenges, being an advocate, and connecting socially with others.

NMSS also offers a free, confidential telephone program called MSFriends. This program connects you with trained volunteers who are also living with MS. The organization also offers MS Navigators, which are highly skilled, devoted professionals who work directly with people with MS. MS Navigators can also work with loved ones, family members, and/or caregivers of those living with MS.

MS World

MS World is a patient-run organization that has served more than 225,000 members. Its mission is to end the isolation of living with MS, and it promotes the idea of “wellness being a state of the mind,” which emphasizes the healing power of the mind-body connection.

This organization has a very large and active MS forum and chat room where you can connect with others living with MS, as well as loved ones of those with MS, or people who think they may have MS.

MS World has dozens of well-organized subforums that allow members to share their stories or discuss specific MS topics like symptoms, treatments, and assistive devices. There is also a subforum for general MS questions and answers.

Additionally, the forum has perks, acting as a wellness center where members can share recipes, books, and movies, and discuss healthy eating habits. Volunteer moderators on the site also review all member posts beforehand, deleting any that are potentially harmful or misleading.

Can Do Multiple Sclerosis

Can Do Multiple Sclerosis is a nonprofit organization that addresses not only the disease, but also its widespread physical, emotional, and spiritual implications.

There are two free support and educational workshops offered by this organization. JUMPSTART is a free, two-hour virtual workshop, with a different topic every month. This program gives people with MS and their support partners the education, tips, and tools for managing their disease and overall health and well-being. The workshops focus on topics like mood and cognition, exercise, navigating the activities of daily life, and healthy eating.

Another option is TAKE CHARGE, which is a free, two-day interactive weekend workshop for people aging with MS and their support partners. The virtual retreat is offered a few times per year, and pre-program courses have people with MS and their partners develop personal goals with a team of coaches and other participants to find solutions on how to live better with MS. Participants will also receive individual coaching from financial planners, dietitians, physical therapists, and medical professionals. Courses cover topics such as aging and MS, cognition, managing mobility challenges, sleep, and intimacy.

MyMSTeam

MyMSTeam is part of MyHealthTeam, an independent startup based in San Francisco.

This free social network of over 158,000 members is easy to navigate and is a good place to start if you are recently diagnosed or looking to foster new friendships.

On the website, you can find people like you by searching through a directory, which sorts members using various filters, such as the type of MS they have or their symptoms.

Their network also provides a friendly, guided question and answer section. Another cool feature is the activity page, where members can post and share pictures, stories, thoughts, jokes, and inspirational quotes.

An added note—the organization does report that it may partner with a pharmaceutical company or university on occasion. MyMSTeam states that it occasionally shares information about members, which is kept anonymous and does not reveal any specifics. MyMSTeam will always let individuals know ahead of time if it is doing so, and does not give these companies access to the actual network.

Multiple Sclerosis Association of America

The Multiple Sclerosis Association of America (MSSA) is a nonprofit organization that aims to improve the lives of those with MS through service and support.

The My MSAA Community is a free online support forum (powered by HeathUnlocked.com) for people living with MS and their loved ones. The forum has more than 8,000 members.

The forum layout is well-organized and easy to navigate. Registration is fast and straightforward. Members write a post, and then others can respond with a reply or a "like." You can also search on the forum for members who live near you for a better connection.

Another one of MSSA’s services is its toll-free Helpline, which allows people with MS and their family members, friends, and caregivers to speak with a trained social services specialist or counselor.

MS Focus

The Multiple Sclerosis Foundation (MSF) created a supportive community called the MS Focus Independent Support Group Network. Within this program, individuals living with MS or healthcare professionals can receive various materials and resources through MSF to launch and lead their own support groups.

People can share their MS journey and struggles and the support group leader can share tips on living well with MS, encourage positive thinking, and provide up-to-date MS research findings.

To find a support group (not necessarily start one), you can search the online directory for meetings near you. MS Focus also has a Facebook group for folks who prefer online support, which includes discussions about alternative medicine, therapy, medications, and pain management. There are moderators for the community, but conversations are free-flowing.

PatientsLikeMe

PatientsLikeMe is a MS community where members can share personal data (i.e. log their MS symptoms or treatments they tried). This data is then collected, combined, and revealed through a series of illustrated, colorful, and easy-to-read graphs and charts, which is available for members.

The data provided by members is voluntary, so HIPAA privacy rules do not apply to the site's user health profiles. Nevertheless, the numbers are robust, and even examined and used by clinicians and researchers as a tool for better understanding the disease.

When registering for this support group, you will first fill out a profile. To make your experience more personal, you can choose to include a picture and share your MS story in a blurb that is visible to others.

Frequently Asked Questions

What are MS support groups?

MS support groups are communities of people who come together, either virtually or in-person, to connect and share their experiences and struggles with living with MS. The mission of these communities may vary slightly, but it generally entails sharing resources and coping strategies and providing emotional support and encouragement.
Is a MS support group right for me?

Living with a chronic, unpredictable disease like MS can be isolating. Participating in a support group is one way to see that you are not alone in your experiences and the challenges you face. Besides a social connection, a support group can be a pathway for you to learn more about MS. In addition, support groups can be a source of inspiration. Many people find comfort in helping others and sharing their unique MS struggles. Deciding whether or not to join a support group is a personal choice—and keep in mind, it is not something that is permanent by any means. You can join, leave, and rejoin as you like.
How are MS support groups structured?

MS support groups are generally structured around one or more common goals—for example, to combat isolation, help form friendships, or provide MS education.
Online and in-person support groups usually have a leader or moderator to help guide the community and keep them on track with the goal or topic in mind (if applicable). With online groups, the moderator may read messages beforehand to ensure they are appropriate and safe.
What do they cost?

The vast majority of MS support groups are free, as are their provided educational resources. Some of the organizations do engage in various fundraising activities to support their cause. Therefore, by joining a support group or subscribing to its website, you may receive emails about participating in a fundraising activity or making a monetary donation to the site, so that they can continue to provide resources for free to those with MS.

3 Sources

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