The Benefit of Support Groups For Multiple Sclerosis Patients
By CarePatrol of Baltimore
You never really think about support groups, that is –until you do. Until you are faced with something that you don’t want to face alone, facing what someone who hasn’t experienced it themselves couldn’t possibly understand. Support groups fill that need by providing a system and framework of understanding, advice, and a sense of community.
From online, anonymous groups, to large national networks or small in person circles, multiple sclerosis patients especially benefit from connecting with a support group, whatever shape or size it might come in.
The National MS Society identifies specific benefits of support groups to MS patients as1:
- Learning new information and strategies for confronting problems.
- Finding support from others.
- The opportunity to help others.
- Feeling empowered and more self-confident in coping with challenges.
Some people have a fear of talking about their health or concerns in a group of strangers or are uncomfortable or unable to meet in person due to mobility issues or transportation challenges. Online groups help to break through those barriers. Online groups can be highly relevant, breaking into categories of support for young adults, parents, seniors or athletes with MS. There are many online groups for MS patients. MSconnection.org is offered by the National MS Society, but there are multiple other platforms.2
You'll find diverse MS online support groups on3:
- Facebook. Pages created by private groups or nonprofit groups like the Multiple Sclerosis Foundation.
- Websites. Forums for all kinds of medical conditions, i.e. sites like Patients Like Me.
- Society and Nonprofit Association websites. The National MS Society's MS Connection for example.
- Drug manufacturers, which may provide peer counseling, a Facebook page or other services for people impacted by MS, such as the services offered by EMD Serono, highly relevant if you use a medication made by the company.
Most online support groups are free. To take part in an internet-based group, sign up for their platform, create a personal profile and then post questions or comments if desired. Sometimes it’s beneficial to simply read the posts and comments of others. This helps an MS patient connect to similar concerns to their own, read helpful tips they may not have thought of themselves, and see the broader community that is active and available. By understanding the commonality of concerns within a cohort of fellow MS patients, a person may have a sense of reassurance and connection replacing feelings of fear and isolation. Other online members respond to individual posts. And patients can post back and forth as often as they like, 24 hours a day. 4 Some online groups offer medically provided responses from a physician or a medical professional.
“They offer education, ways to cope, and opportunities to help others.”5
In-person groups, through a hospital, doctor's office, or nonprofit agency, like a local chapter of the National MS Society, give patients a chance to develop connections with people in their area. A support group is usually run by a facilitator who leads discussions and a small number of people with MS contribute their feedback.
For in-person support, you may need to register with the group offering the session, before going to the meeting. These are also typically free. A topic for the day may be introduced, with members contributing related experiences or concerns. A facilitator may ask members of the group how they're doing, with other members offering insight and advice based on their own experience or information they have received from their medical teams. At some meetings, guest speakers give advice about specific topics. Questions are fielded afterward, with the expert or guest weighing in with their feedback.
This is a great way for new patients to learn from patients who have had MS for longer and therefore are able to provide insight to what to expect and ways to manage what might be occurring.
Things To Consider When Looking For A Support Group6:
There are several things to consider when you're looking for a support group, such as:
- Location: Are you able to get there on a regular basis? If not, an online support group might be easier.
- Other members: Are you looking for a group with specific characteristics (such as young adults or newly diagnosed MS), or are you open to any type of group? Whatever group is chosen, there may be group members who are doing better or worse than you. Remember that they may still have valuable information to share wherever they are on their journey.
- Approach: Do group members share only problems, or are they looking for solutions? Is the group support-oriented or education-oriented? Look for a group that will give you tools to move forward. The goal is to come away with a better way to cope.
Whatever group works best for you, remember you are not alone. Group members are happy to lend an ear, offer support and guidance, and share information about other resources that may be helpful. Participate at your comfort level. Sometimes being “connected” is support enough.
1 National MS Society, Chapters, https://www.nationalmssociety.org/Chapters
2 Lynn, Judy. “MS Support Groups: Pot Brownies, Shoes, Bladders - and Inspiration” Multiple Sclerosis News Today, BioNews Services, LLC. February 15, 2017 https://multiplesclerosisnewstoday.com/youve-got-some-nerves/2017/02/15/ms-support-groups/
3, 4, 5, 6 Godman, Heidi. “The Benefits of Support Groups When You Have MS” US News & World Report. July 28, 2017 https://health.usnews.com/health-care/patient-advice/articles/2017-07-28/the-benefits-of-support-groups-when-you-have-ms