Multiple sclerosis support groups and caregiver support
Multiple sclerosis (MS) support groups provide a way for people to connect with others who are going through similar experiences. They can be a source of empathy, encouragement and prevention of isolation.
Talking with people with the same disease is one of the most empowering things a person with MS can do, according to the Multiple Sclerosis Foundation (MSF).
Almost anyone can join an MS support group because they are available both in person and online. People can choose a way to sign up based on what’s most comfortable for them.
Keep reading to learn more about support groups and support resources for caregivers.
There are many places online where people with MS can come into contact with others with the disease. Some options include the following.
National Multiple Sclerosis Society Facebook Community
The National Multiple Sclerosis Society (NMSS) has a Facebook community with over 7,000 members. It’s a place for people with MS to ask and answer questions. The forum also provides a safe space to engage in respectful conversations in order to provide and receive support.
The information people share in the community does not necessarily reflect the views of the SNSM, so the organization recommends that people research all the advice they receive before trying it.
Besides the forum, the NMSS also lists other online services. These include:
- MS Friends: Individual connections: This group matches a person with a volunteer who lives with MS.
- eSupport Health: These groups meet weekly via online video calls, moderated by licensed therapists with expertise in MS.
- Happy the application: This app provides emotional support over the phone 24/7.
- Edward M. Dowd Personal Advocate Program: Rather than a support group, this option offers intensive case management services to people with MS who do not have a support system or have complex needs.
- MS browsers: This program connects people with MS with the information, resources and support they need.
My MSAA community
The Multiple Sclerosis Association of America (MSAA) offers My MSAA Community, a peer-to-peer online forum. It is open to anyone with the disease, as well as to family members or caregivers. People can contribute to an ongoing conversation or start a conversation on their own.
In addition to the online community, MSAA has a free helpline, live chat system, and email address that people can use for advice from experienced specialists.
Ancan MS Support Group
The Ancan MS Support Group is a monthly peer-led group that a person can join online or by phone. Its goal is to help people with MS cope with the physical and emotional challenges of the disease.
Group members have the opportunity to share ideas and empathize with others who understand and face similar challenges. The group meets the second and fourth Tuesday of each month at 8:30 p.m. Eastern Standard Time.
Facebook Healthline community
Healthline has a Facebook community for people with MS called Living with Multiple Sclerosis. It’s a supportive forum where people can interact, post questions, and share tips.
Plus, it’s a trusted source of information that can help someone on their MS journey. Healthline professionals post links to articles that provide the latest research findings and tips for managing MS.
As with other online support groups, MS World offers a forum to connect with others. It provides a wide range of sub-forums divided into different categories, which makes it easy for members to get very specific information.
Some of these categories include:
There are fewer in-person MS support groups than online groups. However, the two organizations below have local groups in many parts of the United States.
SNSM has a search tool that people can use to find an affiliate group in their area. Each group indicates its coordinates and the dates of its meetings. Some also have additional benefits or features.
The benefits of joining these groups include:
- get emotional support
- help others
- learn new strategies for coping with MS problems
MS Focus Independent Support Group Network
Another in-person option is the MSF MS Focus independent support group network. It offers a search tool so people can find local groups near them. Each group in this network is independent, but MSF structures and guides them all.
The benefits of membership include:
- inspiration and positivity
- tips for getting through tough days
People caring for someone with MS may face their own challenges. Although family members often want to take care of someone they love, caregiving can be hard work. It can affect a person’s finances, energy, and physical and mental health.
However, support is also available for caregivers. Some support groups for people with MS welcome the involvement of family members and caregivers. These include My MSAA Community and MS World.
There are also support groups and services specifically for caregivers, including:
- Support group for family caregivers of the SNSM: This MS-specific support group provides a place for partners, children, siblings and parents of people with MS to share their resources and concerns. This is an in-person group that meets on the second Tuesday of each month in Silver Creek, Maryland.
- Caregiver Action Network: This organization has an online forum where caregivers of people with health problems can ask and answer questions. The forum has subcategories that focus on different topics, such as dealing with caregivers depression and dealing with healthcare professionals.
- Support program for natural caregivers: The US Department of Veterans Affairs (DVA) has information and a helpline for people caring for a veteran with MS. Local DVA medical centers also have a licensed professional on staff to act as a caregiver coordinator.
- CareNav: The Family Caregiver Alliance offers the CareNav program, which provides support and resources to family caregivers of adults with chronic illness.
In-person and online support groups provide a way for people with MS to connect with others who understand their experiences. The NMSS and MSF websites allow people to find local MS support groups in the United States.
Alternatively, people can join online groups, which are accessible anywhere with an Internet connection. Several choices are available, including the NMSS Facebook Community, the My MSAA Community, and the Ancan MS Support Group.
For caregivers, there are similar resources that meet their specific needs. These include the Caregiver Action Network and CareNav.