Community Support and Resources for People With Multiple Sclerosis
Key takeaways:
You don’t have to walk your journey alone if you or a loved one has multiple sclerosis (MS).
You can join a number of MS support groups and share your struggles and successes.
The National MS Society can connect you with resources to help you navigate life with multiple sclerosis.
Living with multiple sclerosis (MS) can lead to isolation and frustration, but it doesn’t have to. MS support groups across the country are filled with people just like you. They talk about their good days and bad, what’s working and what’s not, all within community forums and social networks for people with MS.
There are also a variety of organizations that can connect you with the right resources, whether you are newly diagnosed, you’ve been living with MS for years, or you are caring for someone with MS.
Below you’ll find information on community support and resources to help anyone living with multiple sclerosis.
What help is available for MS sufferers?
Help is available through in-person and online communities and through financial assistance for rent and utilities, homecare aid, medications, and devices. If you aren’t quite sure where to start, the MS Society offers a wide range of resources and support.
What does the MS Society help with?
The National MS Society was founded in 1946 by Sylvia Lawry, whose brother was diagnosed with MS a year earlier. She brought together 20 prominent researchers to start the organization. Since then, the society has grown to offer resources and support in the following areas:
Newly Diagnosed. Learn more about first steps and get links to helpful resources.
MS Navigators. Get professional help finding educational materials, emotional support, financial resources, wellness strategies, and crisis interventions.
Library and Education Programs. Check out webinars, magazines, and videos for people with MS and their caregivers.
Resources for Specific Populations. Find information and resources for veterans with MS and children with pediatric MS.
Calendar of Programs and Events. Browse virtual monthly events like fitness classes, conversations in Spanish, and Ask an MS Expert programs.
What are some MS support groups online?
In today’s digital age, there are online support groups for most health conditions. Multiple sclerosis is no exception. MS groups offer safe spaces to vent, laugh, cry, and process new information. Some groups are strictly for patients, while others welcome caregivers and healthcare providers.
ActiveMSers
ActiveMSers hosts a popular online forum. Members discuss health-related topics like medications for MS fatigue and share tips for staying physically active. They also post about MS events happening across the country.
DailyStrength Multiple Sclerosis (MS) Support Group
DailyStrength allows people with MS to ask questions about medications, vent frustrations, or simply say hello to new friends. DailyStrength also hosts additional support groups for people with addictions, anxiety disorders, cancer, lung conditions, and mental health issues, among others.
HealingWell
HealingWell is a chronic illness support community with a forum dedicated to multiple sclerosis. Users post questions about their symptoms, medications, and other conditions such as diabetes and urinary tract infections.
Kurmudgeons’ Korner
Kurmudgeons’ Korner is an online forum that is only open to people who have been diagnosed with MS. According to the home page, members are encouraged to shoot straight about their experiences living with the disease, cutting out the “artificial sweeteners” and platitudes. But they believe you’ll never find a group of people “who will understand you better, support you more, or make you laugh harder.”
MSWorld
MSWorld serves over 225,000 members around the world with chat rooms, message boards, a creative center, social networks, and resources. Their primary mission is to “end the isolation that people experience when diagnosed with multiple sclerosis.”
Multiple Sclerosis Foundation Facebook Group
The Multiple Sclerosis Foundation Facebook Group has over 21,000 members. They share everything from dating advice to guidance on the COVID-19 vaccine for people with MS. They also share exercise videos featuring chair yoga and cardio workouts.
My MSAA Community
The nonprofit Multiple Sclerosis Association of America (MSAA) provides free services and support to its My MSAA Community forum. Users share their struggles, victories, and everything in between. They also provide MS-specific information about current events like the coronavirus, including a COVID-19 pathfinder that covers everything from getting groceries, staying healthy, managing MS from home, and seeing your provider.
MyMSTeam
MyMSTeam says they’re the largest social network for people with MS. They post articles about pain, brain fog, fatigue, and more. They encourage members to comment on other people’s posts and to share their own experiences. You can even create your own support team with other members and list your healthcare providers for others to see.
Shift.ms
Over 38,000 people affected by MS have joined Shift.ms, a social network and community where you can ask questions, connect with other “MSers” online, and find people with MS near you. The founders are based in the United Kingdom, but they welcome people newly diagnosed with MS from across the globe.
This Is MS
This Is MS provides a forum for members to discuss therapies like Copaxone, Tysabri, and other medications. Members include patients, caregivers, and researchers who share nutrition tips, natural remedies, and personal regimens.
What resources are available for caregivers?
Caring for a loved one with MS can be rewarding, but you need to take care of yourself, too. The MS Society encourages caregivers to take care of their own health and well-being, and offers resources including A Guide for Support Partners and a book for kids and families called Someone You Know Has MS.
There are also support groups specifically designed to meet the needs of caregivers.
Caregiver Action Network
The Caregiver Action Network provides education, support, and resources to family caregivers across the country for free.
Caregiver Media Group
Caregiver Media Group publishes resources including eNewsletters and hosts Fearless Caregiver Conferences that provide you with information, advice, and support in becoming a member of your loved one’s care team.
Well Spouse Association
Dedicated to the well-being of spouses and partners of chronically ill individuals, the Well Spouse Association has a national network of support groups, hosts weekend retreats and a national conference, and offers mentorship programs.
CaringBridge
CaringBridge allows you to build a site to help you stay connected with family and friends. Sites are free and allow you to post updates, photos, and raise funds as needed.
How can I find an MS support group where I live?
The National MS Society has chapters across the country. Search for a chapter close to you by entering your zip code or state. These organizations host fundraising events, in-person support groups, and volunteer opportunities.
The bottom line
Whether you join a local group, hop on an online forum, or connect through a social network, you’re not alone. There are people with MS who want to encourage you on your journey. You can support one another and navigate the challenges of MS together.
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