You'd be surprised how many times I've heard, "but you're too young to have arthritis" or "my granny has that!" Surprisingly, arthritis in children is more common than you may think - in the UK, 1 in 1000 children under the age of 16 will be living with the condition every single day. Having had arthritis from the age of three, it's hard to imagine what my life would be like without it.
Growing up with "an older person's disease" made me grow up quickly. Having to think about treatments and hospital appointments made me much more organised than your average kid. I look back on my childhood with happy memories, despite living with mobility problems. Although the drugs I was prescribed were great at improving my symptoms, they had significant side effects, one even gave me a 'moon face' - not the most flattering look for a teenage boy!
Due to the limitations of living with arthritis as a young person, I was unable to participate in contact sports, as my joints would quite easily dislocate at the drop of a hat. As a result, I've never really been your typical lad. It's a bit of a long running joke now between friends. Simon and sport are never in the same sentence! Although I laugh it off, I am physically unable to do lots of sports - I'd be fit for nothing if I did. It's still important to keep active however, and so I try to go swimming as often as I can, as this doesn't put any pressure on my joints.
So, instead of being your archetypal football mad teenager, I spent most of my time using (or trying to use) my brain. I had already missed months of school due to illness and appointments, having developed Crohn's disease and fibromyalgia as a teenager in addition to my arthritis. My list of diagnoses looks more like a shopping list as the years pass by. Therefore, I channelled my energy and passion into excelling academically. I managed to get through GCSEs and A-Levels, before starting a degree in Biomedical Sciences at The University of Manchester. This was something I had always been interested in but, more importantly, it was an opportunity for me to give something back to society - to help the people living with arthritis and other long-term conditions.
Going to university whilst living with arthritis and my other conditions certainly comes with its challenges, especially having had your confidence knocked out of you as a young person. I still get people who doubt that I have arthritis which is difficult to deal with. You would not believe some of things people have said to me over the years, "it can't be that bad" and "It's so tragic" are two of the worst things I hear. I look like any other young man from the outside, and so when I'm on the train and I ask to sit down, the dirty looks and rejections I get are unbelievable. With arthritis, you can have good days when you feel fantastic, and bad days when getting out of bed is physically exhausting. I sometimes wish they could see and feel what it's like inside my body - sometimes I do feel like an older person!
I may not be perfect, but I wouldn't want to be perfect. I think it can take a number of years for young people with long-term conditions to reach this acceptance "phase", where you can live beyond the limitations of your condition. I am more than capable of achieving what my friends can achieve. If I want to do something, I will do it - why should I not?
My personal experiences have encouraged me to help others living with arthritis, who deal with these conditions on a daily basis. For the past four years, I have built on my experiences to become a patient research ambassador - campaigning for, and representing young people with arthritis at a local, national and international level. In doing so, I have met many people and have seen some amazing places around the world. Last week, I attended the European League Against Rheumatism's annual PARE conference in Bulgaria, having the opportunity to be part of such a wonderful organisation, and to meet inspirational people is truly humbling. Together, we're doing great work in raising awareness of arthritis, an important part of this is sharing personal stories and listening to ways others have overcome the challenges of having a rheumatic and musculoskeletal disease. That's why I am supporting the 2016 World Arthritis Day campaign, 'The Future in your Hands' by telling my personal story to support and inspire others with rheumatic and musculoskeletal diseases. Read more stories and get involved by visiting http://worldarthritisday.org/.
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