MS: Finding Your Support Community

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.”