RAiISE-ing Our Voice is a series of blog posts in which we provide a platform for young people to share their stories and speak up about issues they face whilst living with an invisible illness.
Meet Simon, one of our wonderful RAiISE Trustees who has been living with a variety of invisible illnesses since he was just three years old.
Hi everyone! For those of you who don’t know me already, I’m Simon Stones – one of the RAiISE Trustees! I’m 25 and I’m from a little-old place called Bolton, just out of Manchester. I have lived with invisible illnesses from a really young age – starting off with arthritis at the age of three, Crohn’s disease at 14, then fibromyalgia at 18. Given that I’ve spent most of my life familiar with the hospital environment, it’s no wonder that I was keen to pursue a career related to biology and the human body! I went to The University of Manchester where I graduated with a 1st class degree in Biomedical Sciences in 2016, before embarking on a PhD as a patient researcher at the University of Leeds, where I am looking at supporting children and their families with arthritis.
How I became involved with RAiISE
I first became involved with RAiISE in 2016, after meeting Sophie and Sammy at a conference we all attended in Barcelona, called the International Children’s Advisory Network (iCAN) Research and Advocacy Summit. We had briefly met once before, at a research meeting on a project we were all advising on, but it was evident just how passionate and motivated Sophie was, as well as how supportive Sammy was for ensuring young people have a voice.
After a fabulous week in Barcelona, we were chatting on the flight home about all the things I was involved with at the time, as well as all the things Sophie and Sammy were involved in. Do you know those moments where you’re so full of ideas and things to do that you’re buzzing? Well, that was one of those moments! I said I’d love to get more involved in RAiISE, and as they say… the rest is history!
Why I became involved with RAiISE
Aside from being impressed with the aim and mission of RAiISE, and how Sophie had built the project and soon-to-be organisation from scratch, I had a personal reason why I felt RAiISE was so important, which only further encouraged me to get involved. From the age of three, I have lived with a condition called juvenile idiopathic arthritis, more commonly called JIA. Arthritis is often viewed as an old person’s disease (even today, sadly); therefore, there have been so many struggles over the years to get people to believe me – never mind encouraging them to understand the difficulties I faced. Throughout my education, I’ve faced additional challenges as a result of my arthritis – which is largely invisible. Primary school were incredibly supportive, and this was often my ‘safe space’ as I felt that the staff knew and understood me. Small things such as having a chair to sit on in assembly, and being able to use the staff entrance to avoid having to stand up and queue in the mornings, helped me to make the most of my time at school, without being exhausted before the day had begun!
However, secondary school was a different story – particularly during the first three or so years. While many staff were helpful, there were just a few individuals (as well as certain systems and policies) which had quite a significant effect on me. For example, when I was unable to participate in contact sport (such as rugby), to avoid damaging my joints, certain members of staff didn’t understand, and would make me stand at the side of the sports pitch at watch – while in agony with pain and discomfort. Given that I’d had so much of my confidence zapped away over the years, I simply took it on and didn’t say anything. Looking back, I should have stood up more for myself! There were also a number of other smaller things, such as having lessons all over the place on different floors, which made it difficult to get between lessons in a few minutes, as well as being unable to take notes during lessons because I was unable keep up with writing. If staff had a little more support to understand the complexities of my conditions and had guidance on how to best provide support, so many of these things could have been resolved.
My vision for RAiISE
RAiISE has so much potential – and I’m so excited to be a part of it! Teachers and other school support staff are under increasing pressures, so I’m really keen to ensure that we provide easy, practical support for them, so that they can do their best to help young people living with invisible illnesses. Likewise, I hope that the work of RAiISE will empower young people and their families to get the support they need – enabling every young person with an invisible illness to achieve their potential.