In 2009, Hannah Perryman made an appointment with an ophthalmologist to find out what was causing visual disturbances and eye pain. After a series of tests, including an MRI, she was diagnosed with multiple sclerosis. She started on medication to relieve the visual symptoms, but found that she also needed help with the emotional strain of an MS diagnosis.
“It was a lot to process,” she says. “I remember spending a whole month in tears, not knowing what to do or who to talk to. … It took about a year for the diagnosis to really kick in. “
Perryman didn’t know anyone who lived with MS. In fact, her first thought after diagnosis was, “Oh, like President Bartlet of the West Wing? He has MS. “But a fictional character couldn’t help her manage life with a chronic illness.
Her friends worried but didn’t understand what she was going through. Perryman felt that those closest to her often had trouble saying the right things. When she learned of a support group near her home in Rochester, NY through the National Multiple Sclerosis Society, she showed up for a meeting. It was the lifeline she needed.
“I started connecting with people who also lived with MS, learning their stories and their problems and difficulties, and realizing that I had many similar experiences,” she says. I realized, “Oh, it’s nice to be able to talk about these things.” She quickly became an enthusiastic participant.
Support groups are offered by non-profit organizations, hospitals and clinics. Some provide general support, others target faith communities, women, business people, or focus on issues such as exercise, mindfulness, and MS. For those living with a chronic, degenerative disease like MS, participating in peer-led groups can be life changing.
Research shows that an 8-week peer support group has been linked to lower levels of depression, anxiety, and stress in people with MS. 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 camaraderie 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 advisor who leads support groups for the National Multiple Sclerosis Society. “You can talk about anything you’re going through in a room full of people who are getting it.”
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