Caroline Craven and Michael Wentink share tips on staying socially engaged when living with MS.Photos Courtesy of Contributors
For many people who live with multiple sclerosis (MS), dealing with the physical symptoms of the disease is just one part of the struggle. Feeling lonely and isolated is another.
It can seem like the world is divided by an invisible line: on one side, “healthy” people, and on the other, people with MS, and sometimes the gap feels too wide to cross.
People with MS can experience isolation in a number of different ways, says Meghan L. Beier, PhD, a rehabilitation psychologist and assistant professor of physical medicine and rehabilitation at the Johns Hopkins University School of Medicine in Baltimore.
“This can be true even if an individual has a very supportive family or a good social support network,” says Dr. Beier. It can be common to feel as though others don’t really understand you, your disease, or how it impacts you, and that can feel very lonely, she says.
The feeling of not being understood by others can contribute to a sense of vulnerability as you try to manage concerns both immediate and distant related to MS, such as your energy level, your disease progression, and the judgments of others.
And that sense of vulnerability, in turn, can make isolating yourself seem like a safer option, even though it’s really not, says Caroline Craven, a writer and marketing consultant in her early fifties who lives outside of Pasadena, California. Craven was diagnosed with MS in 2001.
“Even though fatigue and pain can make it hard, we need to get out there and be with other people,” says Craven.
MS: Unless You Have It, You Don’t Really Understand
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