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 was diagnosed with multiple sclerosis. She started taking medication to manage the optic symptoms, but found that she also needed help with the emotional toll of a diagnosis of MS.
“It was a lot to deal with,” she says. “I remember spending a whole month crying, not knowing what to do or who to talk to. … It took about a year for the diagnosis to really take shape.
Perryman did not know of anyone else living with MS. In fact, his first thought after the diagnosis was, “Oh, like President Bartlet of thewest wing? He has MS. But a fictional character couldn’t help her navigate life with chronic illness.
Her friends were caring but didn’t understand what she was going through. Perryman felt his loved ones often struggled to say the right things. So when she learned about 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 to come into contact with people who also lived with MS and got to know their stories, their trials and tribulations and I recognized that I had had a lot of similar experiences,” she says. I realized, “Oh, it’s nice to be able to talk about these things.” “She quickly became a passionate participant.
Support groups are offered by non-profit organizations, hospitals, and health clinics. Some provide general support and others are aimed at faith communities, women, professionals, or focus on topics such as exercise, mindfulness and MS. For people 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 was linked to lower levels of depression, anxiety, and stress in people with MS. Among those newly diagnosed with the disease, a 2020 study found that support groups can help change perceptions of what it means to live with MS.
Even online support groups, which became 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 whatever they go through in a room full of people who understand.”
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