Simon says…

by Simon Stones

Welcome to my first Arthur’s Place blog! As I sit here on yet another train to university, I feel like I am writing my own version of ‘This is your life’! As you’ve probably guessed from the title, my name is Simon, and I’m a born and bred Mancunian! In my first blog with Arthur’s Place, I thought I would share with you a snapshot of my journey so far in life, and how my experience of multiple long-term conditions has shaped me into the person I am today.

Turning back the clock
I never used to believe the old wives’ tale that time goes by much faster as you age, but I have learned to my disappointment that it certainly does! Going back to 1996, I find myself in the shoes of my parents, who had taken their only son to a specialist rheumatology consultant, to find out that I had juvenile idiopathic arthritis – arthritis at the age of three!? My mother described to me the day they received this diagnosis, and the subsequent visit to the in-patient ward, where there were other children with arthritis – even babies. For many people, arthritis is still recognised as an old person’s disease, yet we know this isn’t true. Although I can’t remember my diagnosis, I certainly do remember the years that followed.

Old before my time
Doing things differently, taking multiple treatments, visiting lots of different healthcare professionals. It’s a full-time job in itself – before you add in all of the ‘normal’ activities that a young person does, such as going to school, going on holiday and spending time with friends. It’s no wonder that I was always described as ‘old for my age’! Arthritis essentially stole my childhood away from me. I was in constant pain, unable to move properly, feeling exhausted and experiencing side effects from the many treatments. It wasn’t what I wanted… but I had little power to change what was happening with my own body.

The road to empowerment
I was once meek and mild – rarely putting my hand up in class to answer a question. I know you may struggle to believe that now! Looking back, living with arthritis significantly knocked my self-confidence. Of course, I hadn’t realised this at the time, but it had. I frequently sat in bed at night, asking myself, ‘Why me?’ I could never answer the question, but it certainly frustrated and upset me. As I grew up, and went to high school, I increasingly took control of my health, and began to feel more confident in my ability to cope. Despite several knockbacks due to Crohn’s disease and fibromyalgia in subsequent years, I finally reached a point in my life where I accepted my conditions, felt empowered to take control, and could finally live beyond the limitations that my conditions imposed upon me. As you grow up, you care less about being unable to do things in the ‘normal’ way, and care more about doing what you enjoy and are physically or mentally able to do, regardless of what other people think.

Giving something back
It’s only through my own experiences of ill health that I was inspired to study health sciences at University. Graduating from university was one of the goals on my bucket list, as at times in my childhood, the prospect seemed unlikely and too difficult to achieve. In July 2016, I thankfully graduated from The University of Manchester with a 1st class honours degree in Biomedical Sciences. I had teased with the thought of doing a PhD, but I never thought it would happen – not for little old me! Yet, here I am – six months into my PhD at the University of Leeds, working on a project to improve the way that children with long-term conditions, like arthritis, are supported and able to take control of their health. It’s like a dream come true. More importantly, it would not have happened if I hadn’t received that diagnosis of arthritis back in 1996. And do you know what? I would not change my life for anything… well except for a little more pain relief perhaps!

Meet Simon and other friendly folk on Arthur’s Place Social, our Facebook Group

(Any opinions expressed in Simon’s blog are not necessarily shared by Arthur’s Place. Nothing that you read in Simon’s blog constitutes medical advice.)

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