As you’ve probably worked out by now, my name is Simon, and I’m from Manchester in the North West of the United Kingdom. My journey with ill health has been a rollercoaster of a ride, with times when my disabilities are visible, and times when they’re not.
Turning back the clock
Going back to 1996, I find myself in the shoes of my parents, who had taken their only son to a rheumatology consultant, to find out why some joints were looking a bit peculiar. Receiving the diagnosis juvenile idiopathic arthritis must have been a tremendous shock for them – I certainly don’t remember this day, although my mother has often described to me the day they received this news, and the many visits that followed to the hospital, where there saw other children with arthritis – some even younger than I was at the time, aged three.
Unfortunately, a stigma still remains in society, and many people are unaware that arthritis is not just an old person’s disease. 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’!
At times, arthritis stole my childhood away from me. I was in constant pain, unable to move properly, exhausted and enduring the side effects of treatments. At night, I wished that I was like my friends, but I had little power to change what was happening with my own body. It was unbelievably frustrating.
The road to empowerment
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 got me down.
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 further knock backs along the way due to Crohn’s disease and fibromyalgia. Towards my late teenage years, I felt that I had finally reached a point in my life where I accepted my conditions, felt empowered to take control (as much as I could do, at least), and felt more able to live beyond the limitations that my conditions imposed upon me.
It is true that 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 is only through my own experiences of ill health that I was inspired to study biomedical sciences at university. 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. As is common, I didn’t think I was good enough, and I thought that my personal experiences of living with health problems would be a barrier for me pursuing a research career. Yet, here I am – seven months into my PhD at the University of Leeds, working on a project to improve the way that children with long-term, chronic conditions are supported.
My disability matters, but more importantly, I matter as a person, and so do you.