A new YouTube channel is being launched to help young people with MS combat the isolation they often feel following the shock of diagnosis. Chris Burn reports
When Annabel Swift was diagnosed with multiple sclerosis as a teenager, she was told she was the youngest person in the history of York Hospital to be confirmed as having the condition. Then aged 16 and having just finished her GCSEs, she struggled to find the support she desperately wanted to help her come to terms with the uncertain future she was now facing.
Now 26 and working in human resources, Annabel says learning she had MS after first seeing a doctor because of problems with her eye twitching was a frightening and isolating experience.
“You don’t really understand what it will mean,” she says. “There was somebody with it who lived down my street and I was aware of the struggles she had gone through in her life. There was nothing out there when I was younger and everyone I was put in contact with was older. There was what they called a ‘young network’ for people with MS but at that time everyone was about 35. They were at the end of settling down and having children but I hadn’t even finished my GCSEs. It was really difficult.”
Annabel’s experience remains sadly common for young people who are diagnosed with MS. New research from the MS Trust has found that increasing numbers of young people are being diagnosed with MS, with 70 per cent experiencing symptoms ranging from fatigue to vision problems and intense pain before the age of 20. However, three-quarters of them feel ‘confused and scared’ by much of the information they’ve found about the condition, and ‘frustrated and alienated’ that so much is ‘geared towards older people’.
The trust says a common theme throughout the responses they received was one of loneliness. In a bid to challenge this, the MS Trust is launching a new YouTube channel called MSTV which will feature different videos about MS, and star young people who are affected. The aim is to help young people get to grips with the condition, whether they have it or are related to someone who does.
Annabel hopes the YouTube idea can help many young people who find themselves in a similar position to the one she was in a decade ago. “When I was younger, it was difficult because there wasn’t really anything in terms of support. What the MS Trust is doing is fantastic.”
Annabel has what is known as relapsing remitting MS where she gets ‘flare ups’ of the condition which then fade away, in contrast to progressive MS where symptoms get worse over time. She says in the decade she has been living with the condition, treatment has changed for the better and she has gone from having to put up with a painful and difficult injection regime to being able to take tablets to manage her symptoms.
But she says life with the condition has been far from easy, both in her current working life and during her time at university at Sheffield Hallam. “The biggest thing is fatigue when you are trying to study and have a life. At uni, I walked everywhere and it was fine. Now I have to keep on top of it. I can’t walk more than 1.5 miles any more but I used to walk around three miles per day when I was at university.
“The best way to deal with it is to just carry on. I have been brought up by really quite strong people and if you don’t have a strong character you could just get swallowed up by this disease. I just try and fill my time well. But you get to a stage where you don’t do things because you are worried that you can’t. I went to a yoga class and every single movement had to be reworked for me, which I didn’t feel comfortable with.
“That is why having this YouTube channel is great - and what I would love is for it maybe to have different classes for people with MS to try.”
Annabel is happy for other young MS sufferers to contact her for advice. Email firstname.lastname@example.org.