Research we released last year on International Day of Persons with Disabilities found three in five people with MS feel lonely because of their condition.
The findings led us to work with Mumford and Sons bassist Ted Dwane – whose mother Sarah has MS – to create ‘The MS Connection’, a photography exhibition that tells the stories behind that statistic.
Making the MS Connection to fight loneliness
Celebrity photographer Louis Brown worked with 19 people living with MS from all over the UK, including Neil and Jo Faultless. Neil has relapsing MS. After developing a rare viral brain disease linked to his condition, he's nearly blind, has lost the use of one arm, and relies on a wheelchair if he needs to leave the house. He lives with his wife Jo in Birmingham.
Jo says “Neil and I started going out when we were 17. He was a real gadget guy, a class clown, he never sat still. I look back and it’s like we were different people – we had well paid jobs and travelled 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 we’ve been proactive and forgiving, and haven’t stopped working to try and get our lives back. 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 humour I don’t know how we would’ve coped.”
Lack of understanding of MS can lead to isolation
MS is unpredictable and different for everyone, and can cause problems with how we walk, move, see, think and feel. Issues with mobility, losing employment, stigma around disability, and a lack of understanding from loved ones can all contribute to social isolation.
Mumford and Sons' Ted says “Mum was diagnosed at around the time I started touring, and my sister 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. I’m still away a lot, but back then it was especially hard because my parents were just coming to terms with the diagnosis.
The right support can change everything
Ted continued “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.”
Rachel Reeves MP, who Co-Chairs the Jo Cox Commission on Loneliness, told us “Loneliness is a serious issue that pervades every section of society, but people who live with chronic conditions like MS are among those most at risk. 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 MS Connection launched to our volunteers last December. This year it's been touring the UK with our local groups.
You can make a difference
Our local groups, MS Helpline and online community are here to connect everyone with the information, care and support they need.
But we need your help to reach even more people and make sure no one has to face MS alone.