Peer support, information and advice for people with MS
You’ve just been diagnosed with a potentially life-limiting condition. What do you do?
With the whole of the internet at our fingertips, most of us would probably go online and start searching. However, the right kind of information, advice and support isn’t always easy to find.
This was the experience of George Pepper, Co Founder & CEO of Shift.ms, who in 2004 was diagnosed with multiple sclerosis. Unable to locate people who could understand and help with what he was going through, Pepper decided to do something about it. In 2009, Shift.ms – an online community for people living with multiple sclerosis – was born.
Disruption North spoke to Pepper to find out more about the Leeds-based organisation providing education and support around this challenging condition.
Be the change you want to see
In Pepper’s own words, the first few years following his diagnosis were tough. MS – a neurological condition where the body’s immune system attacks the central nervous system – commonly results in symptoms such as fatigue, impaired vision, loss of muscle coordination, difficulty walking and unexplained numbness.
Diagnosed at the age of 22, Pepper’s life was understandably changed forever.
“The diagnosis left me feeling emotionless, confused, and numb – I didn’t know what to think,” he says. “The next couple of years were really challenging. My MS was aggressive early on with regular relapses and it stopped me from doing the things I wanted to do, it restricted my freedom and made it difficult to work. I struggled to find anyone like me, there was no one to talk to of the same age living with MS. I felt isolated at a time when I was crying out for help, support and a community to turn to.”
Struggling with his symptoms and unable to find an adequate source of support, Pepper decided that enough was enough.
“I decided that things didn’t have to be that way,” he says. “I wanted to turn something negative into something positive, and so alongside my Co Founder Freddie Yauner and a group of friends, Shift.ms was born.”
The Shift.ms website provides a space for people with MS to share their experiences and knowledge about MS, and to help each other – in a system of peer support which has proven benefits for all concerned. From the recently diagnosed to those who have been living with the condition for years, the community now counts over 30,000 members worldwide.
Pepper identifies three key impacts of Shift.ms, which result from its emphasis on community and collective support.
“Though Shift.ms, we are able to reduce the feelings of isolation, anxiety and depression that are common amongst those with MS,” he notes. “As a community, we can help people to come to terms with their diagnosis and adapt to life with the condition, and provide them with the knowledge and confidence they need to make positive choices about their health, lifestyle and future.”
“We aim to empower MSers to get on with their lives. The main way we do this is through our forum, where the most common topics include lifestyle conversations, symptoms and treatments. While medical health support is extremely important to MSers it’s also crucial that patients can talk to others with the condition.”
The website is also a point of information for the public around the facts of MS, and what it can be like for people living with the condition. One particularly effective narrative tool is the short films that Shift.ms creates, which paint a harrowing picture of the challenges people living with MS go through in their daily lives.
Seeing the good in the bad
One thing that Shift.ms will never be able to change, and something that Pepper is unafraid to admit, is that MS – in his own words – “sucks”. But the team aims to help individuals find grains of positivity within what is undisputedly a challenging condition.
“Everything Shift.ms does is created by people with MS for people with MS,” Pepper says. “We were founded to give people recently diagnosed with MS hope for a better tomorrow, to help people come to terms with their diagnosis and adapt to life with the condition.”
“We’re different to most charities out there. We like to think of ourselves as anti-charity, alternative and edgy. That’s largely because Shift.ms as an organisation is bittersweet – MS is crap but we try to see the good in the bad.”
Happy birthday, Shift.ms
As the organisation celebrates its 10 year anniversary, Pepper is extremely proud of the community he, his team, and its members themselves, have managed to create.
“Shift.ms has come far since we launched,” he says, “progressing from a small UK charity to a global network of thousands of MSers. The social network has surpassed over 30,000 members, 1.5 million people have visited our website, there are over 120,000 posts and our volunteer network ‘The Energy’ is made up of over 200 active volunteers.”
“Whilst I believed there was a crucial gap in support for recently diagnosed MSers, I never expected Shift.ms to grow into what it is today. As long as Shift.ms was there for MSers who need support – whether it be a handful or hundreds – it would have served its purpose. Never did I anticipate that the network would become a truly global community, growing faster now than it has ever done before.”
So what’s next for the organisation changing the lives of so many people around the world? Pepper is looking forward to a future of greater international expansion; the second iteration of a festival for young people with MS in Europe; the release of films relating to the challenges of having kids, relapses and support networks; and a revamped version of MS Reporters – where Shift.ms community members act as citizen journalists, asking experts critical questions about their condition.
“Our strategic priorities are clear, we know who we are and what we can deliver,” Pepper says. “We place MSers at the heart of all we do now more than ever before. We’re excited about what we can achieve together.”
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