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Inspiring story: living with fibromyalgia and arthritis from the age of three

Simon Stones shares his story of living with arthritis, fibromyalgia and Crohn's disease from a very early age - how he didn't allow the conditions to break him, his work for patients to be heard and how he will be embarking on gaining PhD in bioscience. Simon is the winner of this year's Edgar Stene Prize, an international award for those living with musculoskeletal conditions who shared their story. Below is Simon's story. We encourage you to read it, it is both very touching and inspirational. 

Simon Stones is a 22-year-old student and patient research ambassador. He lives in Bolton with his parents, both of whom have multiple rheumatic and musculoskeletal diseases. “I have lived with juvenile idiopathic arthritis (JIA), hypermobility and fibromyalgia from the age of three, and have helped to care for my mother who has systemic lupus erythematosus (SLE) and osteoarthritis. I am currently studying a bachelor’s degree in biomedical sciences, and hope to do postgraduate research into child health.

I wanted to share my story to help inspire other young people to realise that they are capable of achieving their dreams.

I don’t remember a day without arthritis being there. Always in the background… Wherever you look, whatever you do, it’s there. Having had arthritis from the age of three, it’s hard to remember what life used to be like.

I had a fairly “normal” childhood. It wasn’t like that of my friends in school, but it was all that I knew. Arthritis took its toll on my young body, with constant hot, stiff and swollen joints. Life began to get much worse when I was prescribed a new drug in 2000. For three solid years, I would suffer at the receiving end of this medicine. Weekends consisted of constant nausea and vomiting. I never experienced days out with friends. Even trips to the shops with my parents resulted in me lying down in the car feeling sick. I tried to explain this to my doctors, but they didn’t fully appreciate the impact of this medicine on my life – let alone the impact of the disease in its own right.

Life was pretty rough. I would go to school during the week on the days when I could physically get out of bed. I was exhausted in the evenings and spent the weekends ill at home as a consequence of the medicine. At the age of seven, what was the point in life? If having arthritis wasn’t bad enough, the medicine to “treat” it felt like a punishment. I told the doctors at the hospital that I would rather be stuck in a wheelchair for life rather than take that drug. The light at the end of the tunnel had disappeared and all glimmers of hope seemed a million miles away.

A turning point in my life was in 2004 when, at the age of 11, I was switched on to a new biologic medicine. It was a miracle. After just a week’s treatment with the medicine I was able to get out of the wheelchair and walk – without feeling sick, without agonising pain. It was unbelievable. Although pain and fatigue were there every single day, it was more manageable than before. For the first time in years I felt like I was in control.

As a consequence of my inability to perform sports as a child, I had never been a huge fan of football! Instead, I had channeled my time and energy into learning – into being academic. My aim was to get to do my GCSEs – but not just to pass them, I wanted to get the best! This seemed like a distant goal, and I was uncertain whether I would get there after having had to miss so much time from school.

In the years that followed, I was diagnosed with Crohn’s disease and, in combination with arthritis, I missed an additional 12 months of school. As I began to study for my GCSEs, so many people said it wasn’t worthwhile putting myself through this stress. They suggested that I should just get through the exams, accept whatever I got, and choose a stress-free job that didn’t affect my health. However, they didn’t realise that they had just ignited a spark within me, which was going to prove them wrong. Nobody ever tells me that I am incapable of achieving my dreams!

With sheer drive and determination, I went on to study my GCSEs, pushing myself to the extreme. Given all of the pushbacks in life, nobody was going to stop me now. In the summer of 2010, I was over the moon when I achieved 13 GCSEs at grades A and A*. I then went on to sixth form college where I studied biology, chemistry, and physics at ALevel, achieving A and B grades in 2012. It may not surprise you that, later in that year, I moved to the University of Manchester to study a degree in biomedical sciences. It was something I had always been interested in but, more importantly, was an opportunity for me to give something back to society – to help the people living with rheumatic and musculoskeletal diseases (RMDs).

Going to university whilst living with arthritis, Crohn’s disease and fibromyalgia certainly comes with its challenges – especially having had your confidence knocked out of you as a young person. As I have grown up, I’ve learnt to appreciate the small things in life – a loving family, great friends and embracing new experiences. Now, at the age of 22, I am in the final year of my undergraduate studies, and I am projected to achieve a 1st class honours degree in summer 2016 – something which was just a dream in years gone by. 

I have learnt to take life with a pinch of salt – on my good days I sometimes go mad and do as much as I can. Inevitably, I may suffer the day after – but, to me, it is worth it. I may not be perfect, but I wouldn’t want to be perfect. I think it can take a number of years for you to reach this acceptance “phase”, where you can live beyond the limitations of your condition. I am more than capable of achieving what my peers can achieve. If I want to do something, I will do it – why should I not? Taking your daily medication, doing your exercises and having time out are part and parcel of your daily routine. You learn to adapt, and view the all of the positives in a sea of negativity. 

My personal experiences have encouraged me to help others living with RMDs, who have to deal with these horrendous conditions on a daily basis. I do this in the hope that, one day, people with RMDs will not have to endure the physical, social and psychological consequences of these diseases. For the past three years, I have built on my experiences to become a patient research ambassador – campaigning for, and representing the voice of, young people with RMDs at a local, national and international level. In doing so, I have met many wonderful people and seen some amazing places around the world – something that I would never have done if I didn’t have arthritis. 

Moreover, I have taken the decision to study for a PhD in the autumn of 2016. In doing so, I hope that I will be able to make a difference, and empower young people to realise their dreams, hold on to them and achieve them – because every person with an RMD is a wonderful, capable and unique human being. Studying for a degree, advocating for patients and living with an RMD can, at times, leave you completely drained. But, funnily enough, I have never been happier. Life without arthritis wouldn’t be my life – the one that I love. My experiences have shaped me into the person I am today, and I would never want to change.

I live for today and dream for tomorrow. None of us know what is around the corner but, when you learn to live the life you love and love the life you live, you’ve found true happiness. I keep fighting, I keep smiling and I enjoy every moment in this rollercoaster of a journey that is life.''

The story and the photo has beeen made available thanks to ARMA UK (Arthritis and Musculoskeletal Alliance UK) and EULAR (European League Against Rheumatism). 

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