A musician, a member of Parliament, and the Multiple Sclerosis Society in the United Kingdom have joined forces to increase awareness on the social isolation that often accompanies multiple sclerosis (MS).
The campaign grew from the society’s research, which found that up to 60 percent of MS patients, or 3 in 5 patients, experience loneliness due to their illness — 12 times the prevalence in the general population. What’s more, 58 percent feel isolated, and 42 percent have felt both lonely and isolated.
The new research report on loneliness, released Monday on the International Day of Persons with Disabilities, was based on an online survey of 869 MS patients.
Findings in the report prompted the society, along with Ted Dwane, the bassist for the British folk rock band Mumford & Sons whose mother, Sarah, has MS, to create “The MS Connection,” a photo exhibit that tells the stories of these patients.
Rachel Reeves, a member of the U.K. Parliament and co-chair of the Jo Cox Loneliness Commission, a collaboration of 13 organizations that explore loneliness across all areas of society, is also supporting the project.
“Loneliness is a serious issue that pervades every section of society, but those living with chronic conditions and disabilities like MS are among those most at risk,” Reeves said in a press release. “Government, charities and the community must work in partnership – because it’s not just changes in policy, but widespread changes in attitude and communication that are desperately needed.”
The exhibition kicked off Monday at The Sidings, a venue in the London borough of Southwark, and will likely tour the U.K. next year.
Dwane’s mother was diagnosed with MS after experiencing symptoms for a decade while living in Singapore. At the time, Dwane had started touring, and his sister had moved to Australia.
“It was a period of huge change for my parents and we weren’t there for them in the way we wanted to be,” Dwane said in the release. “I’m still away a lot, but back then it was especially hard because my parents were just coming to terms with the diagnosis.
“Having the right support can change everything, and ultimately both my sister and I made a conscious decision to move back closer to home. A lot of people with MS simply don’t have that network, and can end up feeling totally left out of society.”
Created together with music photographer Louis Browne, the exhibit features portraits of 19 individuals from throughout the U.K. who are affected by MS, two of whom are Neil and Jo Faultless, a married couple who lives in Birmingham, England.
Neil, 38, has relapsing MS. He lost most of his vision after developing a rare MS-related viral brain disease, and uses a wheelchair when away from home.
The couple began dating when they were 17. “He was a real gadget guy, a class clown. He never sat still,” Jo says. “I look back and it’s like we were different people. We had well-paid jobs and traveled the world, drove fancy cars. MS ripped our lives apart; it completely devastated us. Now we’re living day to day on benefits and have lost pretty much all of our friends. Very few people have the patience to deal with us.”
This year, she said, the couple has made it a point to reach out to friends and estranged family members, and re-establish ties. “Until very recently we weren’t even speaking to Neil’s mum and dad, it was just us against the world. Thankfully we’re back in touch with them now, but having that contact again made me realise just how lonely we were, and how bad it was. If it wasn’t for Neil’s amazing sense of humor, I don’t know how we would’ve coped,” Jo said.
Ed Holloway, the MS Society’s director of services and support, said loneliness disproportionately affects MS patients.
“To think 60 percent of people with MS are lonely is shocking, and we hope ‘The MS Connection’ will encourage people to get in touch with us and join the fantastic community that’s out there,” he said.