Support groups for MS
Published 05 May 2022
For Mental Health Awareness week, Regina Beach looks at ways to combat loneliness and connect with others
Being diagnosed with multiple sclerosis (MS) can be a frightening and lonely experience, but it doesn’t have to be. Finding a support group where you can ask questions and swap tips can reduce the stress and overwhelm that can arise while navigating living with MS.
Previously, geography was the most important factor in finding a support group. For people who want to meet up in person, that might still be important. Your local MS therapy centre or your neurologist’s office are good places to look for an in-person group. I’m in a group of people with MS who follow the same healthy lifestyle program and live in South Wales. Most of our interaction is online, but we’ve also met up for tea or lunch. It’s nice to share space and talk without the intermediary of a screen.
Something for everyone
There are other considerations and options with the proliferation of virtual meet ups and online offerings depending on what type of support you’re looking for. You might gravitate towards a group that has more in common than living in the same region.
There are MS groups for parents, those based on shared pastimes, types of disease modifying therapies prescribed, the type of MS you have and ones based on lifestyle. A support group should pick you up and feel nurturing. If you butt heads with other members over treatment philosophy or which diet to follow, that group isn’t going to benefit you. It may be important for you to connect with other people with progressive MS for example or other wheelchair users, or people who share your ethnic background.
MS-UK’s Peer Pods are affinity groups for people with MS who share a common trait such as being newly diagnosed. Peer Pods meet fortnightly on Zoom to provide support and reduce isolation. There is also a Peer Pod for caregivers of loved ones with MS. Find out more and how to join by clicking here.
Overcoming MS Circles Online
Overcoming MS has its Circles Online support groups for people who are interested in the OMS lifestyle program for self-managing symptoms. In addition to region-specific circles that can meet in-person, there is a virtual progressive MS circle and a global circle.
The MS Society runs national support groups throughout the UK. They list affinity groups (some of which are associated with the MS Society while others are independent.) There is also a post code search function to find a group near you.
Shift.MS Buddy Network
Shift.MS is an independent social network and community for and by people with MS. Its Buddy Network connects MSers one-to-one with a supportive buddy. There is also a forum where 40,000 members swap tips and discuss all things MS related.
The MS Trust runs a Facebook group with 16,000 members asking and answering questions about symptoms, research and treatments.
There are also Facebook groups for people taking specific disease modifying therapies, parents who have MS and humorous groups sharing the lighter side of living with the condition. There are groups around lifestyle modifications such as The MS Gym and The MSing Link for exercise, Healing Multiple Sclerosis Naturally and various general MS support groups.
Shop around and eventually you’ll find a support group (or two) that you click with. Chances are there is a group out there that caters to you, but if you can’t find one, there’s always the option to start your own.
Starting Your Own Group
If you cannot find a suitable MS support group to meet your needs, you could start your own. Running a group can be a big undertaking. Ask yourself the following questions to get started
- Will you start a chapter of an established group or start an independent group?
- What specific need will your group address that’s not currently being met? For example, is it an in-person group for men with progressive MS in your area or a virtual group for pregnant women with MS?
- What specifically will your group do and how will you support each other? Journaling about what you want your group to look and feel like in a year when it’s fully up and running can be helpful. Then you can plan the steps you’ll need to take to get there.
- Think about your own health and capacity. Do you need a co-leader or can you handle the responsibility alone?
- How will you advertise your group to potential members? How will they sign up?
- Do you have a plan in place if a group member has a serious issue you don’t have the expertise to address?