Carrie Smith remembers the moment she received her multiple sclerosis diagnosis. The 46-year-old from Nashville, Tennessee, was 31 at the time, with a new baby at home. “Overwhelming is the perfect word. It seemed like the world was crumbling,” Smith recalls.
Her reaction was typical.
“MS is life-changing, especially for younger people who feel omnipotent and suddenly have this diagnosis that’s treatable but not curable and potentially disabling,” says Dr. Ellen Lathi, a neurologist and medical director at the Elliot Lewis MS Center in Wellesley, Massachusetts.
In MS, the immune system mistakenly attacks myelin (the protective coating on nerves), brain cells and optic nerves. That can lead to problems with muscles, walking, cognition, mood and vision. Debilitating fatigue is also a common symptom.
Faced with autoimmune disease and an uncertain future, Smith did what thousands of MS patients do every day: She turned to support groups for help.
[See: Am I Just Sad — or Actually Depressed? ]
Types of Support Groups
Support groups for MS come in many forms. Some are in-person groups offered through a hospital, doctor’s office or nonprofit agency, such as a local chapter of the National MS Society. A support group usually consists of a facilitator who leads discussions and a small number of people with MS.
Or you can take part in one of the countless MS support groups offered on the internet. These groups may have only a few members, or they may be thousands strong. The groups may focus on general MS issues or be broken into specific subgroups, such as moms with MS, 20-somethings with MS, professionals with MS or even artists with MS.
You’ll find these groups on:
— Facebook, with pages created by private groups or nonprofit groups like the Multiple Sclerosis Foundation.
— Websites that provide forums for all kinds of ailments, such as Patients Like Me.
— Nonprofit websites, like the National MS Society’s MS Connection.
— Drug manufacturers, which may provide peer counseling, a Facebook page or other services for people impacted by MS. Smith participates in the services offered by EMD Serono, since she uses a medication made by the company.
How Support Groups Work
Most support groups are free. For in-person support, you may need to register with the group offering the session, then go to the meeting at its scheduled time. A facilitator may introduce a topic for the day, with members chiming in with related experiences or concerns. Or the facilitator may ask all members of the group how they’re doing, with other members offering insight and advice. Sometimes support groups bring in guest speakers to give advice about a specific topic and answer questions from support group members afterward.
To take part in an internet-based group, you simply sign up, create a personal profile and then post questions or comments. Members respond to your posts. You can post back and forth as often as you like, 24 hours a day.
[See: Apps to Mind Your Mental Health.]
The Value of Support
Support groups enable you to connect with people who relate to what you’re going through. A 2013 study suggested that this identification is associated with positive outcomes on MS patients’ depression, anxiety and satisfaction with life. “There is undoubtedly a powerful dimension to sharing ideas with individuals who have spent a day in your shoes that cannot be achieved with other levels of support, such as family, friends or clinical providers,” says Kevin Alschuler, a psychologist and associate professor of rehabilitation medicine at the University of Washington School of Medicine.
Why does it work? “You notice that there are people facing similar challenges to you, who are implementing something in their world, and maybe you can do something similar to what that person is doing. It’s not just theory anymore,” Alschuler explains.
For Smith, going to a support group initially gave her hope. “To see other people going on and doing well was encouraging. It helped me to know there was a light at the end of the tunnel,” she says.
Support groups also offer socialization and personal reward. Smith now finds herself in a supportive role to fellow group members. “Sometimes I go to help other people going through something,” she says. And she’s also signed up to be a peer mentor through her drug maker’s support services.
Support groups are also good sources of information, whether it comes from a group facilitator, a speaker or fellow support group members. “That’s one of the best things about the support group, whether online or in person — the tips and life lessons from people who’ve been there and done it,” Smith says.
Advice that made a big difference for Smith came when her daughter wanted to go to Disney World one summer. “I was crushed because I thought, ‘How am I going to do that?’ Heat is difficult when you have MS,” Smith remembers. After tips from support group members, Smith wound up going to the park in October, when it’s cooler in Florida, and wearing a special cooling vest to keep her from overheating. “It was fabulous!” she says.
What to Look for in a Support Group
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 for you.
— 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? “Either way, there may be other group members who are doing better or worse than you, but it is important to remember that they may still have valuable information to share,” Alschuler says.
— Approach: Do group members share only problems, or are they looking for solutions? Is the group support-oriented or education-oriented? Alschuler recommends taking part in groups that will give you tools to move forward. “We certainly want people to have the opportunity to talk about their challenges, but we want them to come away with a better way to cope,” he says.
[See: 10 Lessons from Empowered Patients.]
Things to Keep in Mind
Finding support is easy; getting the right fit may take more time. Smith tried several in-person groups before she found the right fit at a local hospital. “It was a smaller intimate group of mainly women. From there, I found a lot of online support groups,” she says.
When you do join a group, be prepared to contribute: Share your challenges, listen to others and offer support.
And remember that your needs for support may change along your MS journey. As Smith has learned to cope with MS, she’s dialed back her involvement, checking in with her online groups every other week and going to monthly in-person meetings. “But I can’t imagine living my day-to-day life and being where I want to be emotionally and physically without the support of the MS community,” she says.
If you’re uncomfortable with the idea of a support group, know that there are alternatives. “Everyone should try to find support,” Lathi advises. “That might take the form of friends or religious organizations or therapy. But be open to it, because it opens a whole new world to you.”
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The Benefits of Support Groups When You Have MS originally appeared on usnews.com
