Finding Your MS Community

4 min read

In 2009, Hannah Perryman made an appointment with an ophthalmologist to find out what was causing blurred vision and eye pain. After a series of tests, including an MRI, she received a diagnosis of multiple sclerosis. She started medication to manage the optical symptoms but realized she also needed help with the emotional toll of an MS diagnosis.

“It was a lot to process,” she says. “I remember spending an entire month in tears, not knowing what to do or who to talk to. … It took about a year for the diagnosis to really sink in.”

Perryman didn’t know anyone else living with MS. In fact, her first thought after diagnosis was, “Oh, like President Bartlet from TheWest Wing? He has MS.” But a fictional character couldn’t help her navigate life with a chronic illness.

Her friends were caring but didn’t understand what she was going through. Perryman felt those closest to her often struggled to say the right things. So, when she learned about a support group near her Rochester, NY, home through the National Multiple Sclerosis Society, she showed up for a meeting. It proved to be the lifeline she needed.

“I started to connect with people who were also living with MS and getting to know their stories and their trials and tribulations and recognizing that I had a lot of similar experiences,” she says. I realized that, ‘Oh, it's nice to be able to talk about these things.’ ” She quickly became an avid attendee.

Support groups are offered through nonprofit organizations, hospitals, and health clinics. Some give general support, and others are aimed at faith communities, women, business professionals, or are focused on topics like exercise and mindfulness and MS. For those living with a chronic, degenerative illness like MS, taking part in peer-led groups can be life-changing.

Research shows that an 8-week peer support group was linked to lower levels of depression, anxiety, and stress for those living with MS. Among those newly diagnosed with the disease, a 2020 study found that support groups can help change the perception of what it means to live with MS.

Even online support groups, which have become more common during the coronavirus pandemic, can provide emotional support, information, and companionship to those living with the disease.

“People come to support groups because they don’t want to feel alone,” says Ronnie Hochberg, a licensed mental health counselor who leads support groups for the National Multiple Sclerosis Society. “They can talk about everything they are going through with a room full of people who get it.”

While it’s common for those feeling overwhelmed with a new diagnosis of MS to seek out support groups, Hochberg says not everyone starts right after their diagnosis.

“There are people who come because of the initial shock; they get the support that they need and they leave,” she says. “There are people who keep coming because they like the support, can be themselves. And there are people who come when their disease changed in some way that leads them to want more support.”

At all stages of the disease, Hochberg believes the chance to talk to peers about topics such as telling people at work, changing medications, or adjusting to using mobility aids is an important part of adapting to life with MS.

Perryman has taken part in support groups for more than 2 decades. With the help of her peers, she learned how to advocate for her needs with doctors, drug companies, and insurance providers -- and shared her experiences to help others in the group do the same. In 2012, she joined a second support group with a fitness focus and completed triathlons and marathons alongside others with MS.

The MS community has an unwritten understanding that if you're able to run, you should run, she says. You should run until you can't because there’s an unpredictability with this disease. “The support group helped me understand that.”

The support group also helped Perryman realize she had a passion for helping others with MS. She earned a graduate degree in social work and started co-leading groups to help people navigate life with a chronic illness.

“The support group is one of the ways that really helped me process the gravitas of having a chronic illness that has no cure,” she says. “Knowing that there's somewhere you can turn to talk to about that with a group of people who understand -- I just find that to be really beautiful.”