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.
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.
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 or African Americans living with MS, with focuses on learning about the condition, coping with challenges, being an advocate, and connecting socially with others.
Another valuable resource of NMSS is its Happy the App emotional support service. With this mobile app, you can receive around-the-clock emotional, compassionate support from a Happy Support Giver, which is a social worker, nurse, peer supporter, or caregiver. The first two calls on “Happy the App” are free. For subsequent calls, the cost is about $12 per half hour.
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.
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.
There are two free support and educational workshops offered by this organization. JUMPSTART is a free, one-day workshop that gives people with MS and their support partners education, tips, and tools for managing their disease and overall health and well-being. The workshops, which are offered virtually, focus on topics like mood and cognition, 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 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, sleep, intimacy, and exercise.
This free social network of nearly 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. MyMSTeam states that it occasionally shares information about members (though it doesn’t reveal specifics), which is kept anonymous. MyMSTeam will always let individuals know ahead of time if it’s doing so, and does not give these companies access to the actual network.
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 6,220 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.
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.
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.
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.
