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Simon Stones - Talk About Your Arthritis

Simon Stones has had arthritis nearly his whole life. For many years he figured out ways to cope by himself but recently he has discovered the power of sharing his tips with others while learning from them in return. Here Simon shares with us what he has learned and how finding a community has had hugely therapeutic benefits.

When we think of people with arthritis…

most of us will imagine an older person. They think of osteoarthritis, so the wearing down of the cartilage, and they think hip replacement. In the UK alone there are around 15,000 children with juvenile idiopathic arthritis which is the childhood onset version.

People fail to understand the full…

implications of arthritis. Often it’s invisible. Young people have to have the confidence to ask for a seat on the train when it’s full or to use the disabled toilet. As a society we’re still not good about being open about that. There is much we need to do to make people aware of and accept it.

Everyone deals with arthritis…

in their own way. There is no right or wrong way. But there are some days when you have to put your hands up and say “you know what, it’s fine to have a bit of a lazy day today because I’m ill.” That takes some building up of an acceptance to do that. Now I’m at a point where I want to share my experiences to help others. I know how difficult it can be.

It’s only the last few years…

that I’ve started to share my experiences. I find it positive when I talk about my condition, it’s a therapy in itself, it gives me time to reflect on what’s good, what’s bad, what I can do about it.

I’ve learned so much…
from other people. Hearing about what other people go through makes you feel like you’re not alone and that there are others out there who really understand what you’re going through. It’s such a crucial tool. It’s something that is often sidetracked when you have a physical condition. You’re so focussed on the illness itself you forget how difficult it is to deal with it from a mental point of view.

Technology allows us…

to meet other people with arthritis. I’m part of a group on Facebook called Arthur’s Place but there are loads out there to find. It’s a social environment where we all try to support each other, it’s been hugely helpful to myself and others in the group. You see other people asking questions and sharing experiences.

I came across EULAR about…

three years ago when I was offered to work as a patient partner on a research project which was funded by them. PARE (People with Arthritis and Rheumatism in Europe) came out of some research EULAR had done which showed that we really are bad at supporting young people with arthritis.

You meet people in…

other countries that don’t have things as good as we do here in the UK. We complain that things could be better, and of course they could, but we’re incredibly lucky when it comes to our health system and the opportunities we’ve got. There’re so many charities in the UK working with patients and providing a peer support network outside the clinic. EULAR is actually implementing change, it brings patient organisations across Europe together to promote collaboration and a shared sense of moving forward as one. We see all too often that people and groups work alone on projects, but we have a much stronger voice together, and it is with the help of EULAR that we are able to do this.

People associate research with…

a lab environment of trial and error. But it can be as simple as completing a questionnaire or having an interview with a researcher or health professional. Being involved in research can change what is available to people in the future. We’re using our knowledge to say “here are our priorities, here are the difficulties we’ve got and really embed them into research.” I’ve also found it an opportunity to learn about myself and my condition.

You can follow Simon Stones onTwitter, Facebook, InstagramandLinkedin, as well as his his website.

All photos courtesy of Simon Stones and and instagram.com/simonstones
 

 

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