I remember lying in hospital waiting to be told the results of my MRI scan. I knew it was serious, I just didn’t know quite what I was preparing myself for.
It was just one year into my first “proper” job. I was told I had multiple sclerosis. I didn’t know what MS was and I certainly didn’t think it was an illness a 22 year old should be concerned with. I learnt that MS is a disease of the brain and spinal cord. I heard words such as chronic and progressive. I was told that you have good days and bad days, and that MS affects everyone differently.
I felt numb in the months following diagnosis. Trying to get a handle on what this illness might mean to me was almost impossible as I experienced one symptom after another. Blurred vision, issues with my balance, problems walking and difficulties using my fingers. It felt relentless.
Thankfully once the symptoms eased, I had the opportunity to begin to process what had happened and the challenges ahead. Family and friends rallied round, but it became clear that I needed to speak with other people who understood what I was going through – people with MS.
I decided to attend a local “meet-up” for people with MS, which felt a big step in coming to terms with my condition. As soon as I arrived, I immediately felt out of place. The rest of the people there were in a different situation to me – a different stage of their MS and were facing very different challenges. I was a young man, in my early-20s, trying to come to terms with my diagnosis and the forced change of circumstances. I had never felt more alone.
So I began to look for young people with MS online, but the majority of MS forums were communities of people who have been living with the condition for many years. They had very different needs to my own.
Shift.ms provides a channel for those recently diagnosed to find like-minded people to speak with and get the reassurance that they are definitely not alone
I remember being told by my neurologist that people with MS are most commonly diagnosed in their 20s and 30s. So where were all these young people? They weren’t at the support groups and I couldn’t find them online. I needed to find a way of meeting the people who were in a similar situation to me. I understood that MS was a progressive illness; however, there seemed to be a gap in supporting those at the time of diagnosis.
Diagnosis, when you’re a young adult, typically coincides with a time when you are making life decisions about your relationships, family and career. I felt having peer support at this time was crucial. Speaking to those who are experiencing the same symptoms as you and who understand without the need to explain, can help give you direction of how to overcome your fears and make you realise you are not alone.
With the help of friends, in 2009 I founded www.shift.ms. It’s a social network by MSers, for MSers. The 6,000 members drive the content and we aim to create a positive enabling community that supports MSers to acknowledge and actively manage their MS. We recognise that with MS one size doesn’t fit all, and that one support organisation is unable to successfully appeal and meet the needs of all MSers.
Shift.ms provides a channel for those recently diagnosed to find like-minded people to speak with and get the reassurance that they are definitely not alone.
I have now been living with MS for ten years. In that time I’ve travelled around the world, bought a house, got married and we are expecting our first child later this year. It took me a while to realise, but MS doesn’t mean giving up on your ambitions – just rethinking how to achieve them.