It’s not uncommon for patients diagnosed with a challenging illness to feel frightened and alone. Multiple sclerosis is no exception. The good news is that when it comes to MS, there are plenty of self-help groups all around the country that can offer support from folks in similar circumstances who share their personal experiences, offer educational information and build each other’s confidence by discussing ways that help them cope.
“Although multiple sclerosis attacks people of all ages, it frequently hits those who are younger than 40 years, a time of life when we’re often deeply involved with advancing our careers, raising families and nurturing relationships,” says Dr. Jacqueline Nicholas, a neurologist with OhioHealth Multiple Sclerosis Center in Columbus. “Obstacles can feel insurmountable, but a support group can shine light on the path and help patients navigate around their disease.”
[See: 10 Seemingly Innocent Symptoms You Shouldn’t Ignore.]
“MS is an autoimmune disease that comes with a range of symptoms as a result of the body’s own white blood cells randomly attacking the coating [myelin sheath] around the neurons in the brain and spinal cord. It causes a number of neurological problems including weakness, numbness, imbalance, as well as cognition issues,” Nicholas explains. “About 25 percent of patients will also experience anxiety and depression at some time. Support groups can be overwhelmingly positive in helping to ease MS sufferers’ concerns around these symptoms.”
Nicholas’ view is supported by a 2011 study conducted by the University of Nottingham in the UK and published in the Multiple Sclerosis Journal that looked at whether support therapy helped lessen depression and anxiety in MS patients. The researchers divided 151 MS patients into two groups. Half were offered group support, and the other half was promised it at a later date. The researchers found that those MS participants who attended the group sessions had fewer problems with anxiety and depression; the impact of the disease on their daily lives was lessened and their overall quality of life improved.
Donna Siegal, a licensed clinical social worker at the Corinne Goldsmith Dickinson Center for Multiple Sclerosis in NYC, has seen firsthand the positive power of support groups, especially when the meetings are tailored for a patient’s particular situation. For close to five years, Siegal’s been running a bi-weekly support group for people with progressive MS. “The impetus for the group came from my observation that the experience of having a chronic, progressive disease [characterized by continuous accumulation of neurological issues] was markedly different than having a relapsing remitting one [when symptoms intermittently flare-up],” Siegal explains. “Although there’s an element of uncertainty with MS across the board, the patients in my group tend to deal with loss on an ongoing basis. The group works not only with psychological issues, but there are concrete discussions about side effects of medications, symptoms, as well as resources in the community. Group members give each other practical advice such as helpful phone numbers and tips for traveling when dealing with the constraints of disability.”
[See: 5 Rare Diseases You’ve Never Heard of (Until Now).]
Nicholas agrees that tailoring a support group to the needs of the patient is crucial. “We hold different groups. One is for the newly diagnosed, and with this group we’ll have a physician or nurse practitioner visit from time to time to discuss particular concerns, as well as facilitate discussions among fellow MS patients,” Nicholas says. “At the same time, when people are first diagnosed, it seems like everyone wants to offer advice. So, it helps to get together just to sort through the onslaught of information.”
Although support groups can be helpful, they may not be for everyone. For those who are more introverted or don’t have the mobility to travel to the meeting, or if there isn’t a support group available within a reasonable distance, there’s always the internet to offer a virtual sense of community. Facebook, as well as other online groups, may be a good option. Even if you choose to be “silent” and not contribute your own story, it still helps. A 2014 study published in the African Journal of Disability looked at the benefits of an MS Facebook group with members who were non-participatory. The finding revealed that the online Facebook support group also offered non-active members emotional support, information and social companionship.
[See: Am I Just Sad — or Actually Depressed?]
Whether you choose to become a member of an in-person support group, participate or be silent online, here are some ways to connect:
— Go to this National Multiple Sclerosis Society page and type in your zip code to find a local group nearest you.
— For a Facebook connection, visit here.
— There’s an app for that here.
— And a forum and chat site here.
More from U.S. News
Am I Just Sad — or Actually Depressed?
10 Seemingly Innocent Symptoms You Shouldn’t Ignore
5 Rare Diseases You’ve Never Heard Of (Until Now)
Do Support Groups Help MS Patients Feel Better? originally appeared on usnews.com
