Simon Stones has never known a life without arthritis. Diagnosed with juvenile idiopathic arthritis when he was just 3-years-old, he's since developed psoriatic arthritis and fibromyalgia and lives with a number of other conditions, including Crohn's disease.
Refusing to be beaten, Simon has made it his life's aim to improve the lot of young people suffering the effects of ill health.
He graduated from the University of Manchester with a 1st class degree in Biomedical Sciences in 2016 and is currently working on a PhD at the University of Leeds with a focus on 'innovative approaches to the self - and shared - management of arthritis by children, their families and professionals'. Along the way he's won numerous awards for his patient advocacy.
We think he's an inspiration...which is why we were so desperate to talk to him.
In the first of this two part interview he reflects on the importance of a holistic approach to living with arthritis.
Traditionally, people have focused on the physical toll taken by arthritis but the effect on one’s mental health is arguably as important, isn’t it?
Arthritis affects every aspect of your life – physical, social and emotional. It’s no longer acceptable just to focus on the physical aspect of the condition, though this remains the case for a great deal of people around the world.
We know that mental and physical health are intrinsically linked – after all, you can’t have one without the other! I hope that we really move to a place where we don’t focus on physical health in one bubble, and mental health in another. Rather, we should be focusing on individual health and wellbeing – incorporating everything about that individual and their circumstances (including their family, friends, education, employment and hobbies).
Helping people to cope with the complexities and challenges that arthritis can present is so important for enabling and empowering people to manage their health and wellbeing. This ultimately has an effect on physical health, and people’s ability to find education and/or work that fits around their individual needs and abilities.
Those living with arthritis are often advised to keep moving to maintain mobility in their joints, but it’s also important to recognise the benefits of an active lifestyle to positive mental health...
Absolutely – though it’s one of those things that you have to experience for yourself to truly understand and find value from. All too often, professionals will tell patients that they need to exercise more. If anything, this has the opposite effect of the original intentions – after all, if you tell somebody to do something, they probably won’t!
Rather, I think we should be supporting people to find the most appropriate forms of activity, enabling them to discover what works for them, and most importantly, what they enjoy. Too little activity can be bad for you, but so can too much activity! I personally believe in finding a balance that works – giving yourself ample opportunities to keep active, dispersed with rest and paced to reflect how I am feeling on a given day or week. More recently, I have noticed the positive effects that activity has had on both my physical and mental health.
From a physical point of view, keeping active has helped me to build up strength. At times it has been uncomfortable and somewhat painful, but with perseverance, I have begun to notice the positive impact of strength on my posture.
From a mental point of view, staying active has given me something to focus on and look forward to, aside from my heavy workload. I don’t tend to use the word exercise anymore either – preferring to think of it as staying active. Whether that be an intensive vacuum of the house, shaping the garden, pilates, swimming, or a walk in the countryside, it’s time I am using to invest in looking after my body.
Do you have any advice for those struggling with depression and/or anxiety as a result of their arthritis?
I find it difficult to provide overarching strategies to overcome depression and anxiety, because so many different things work for different people. I have always been an optimistic, positive person, which I believe has been instilled into me from my mum, who has always persevered in life despite adversity. I feel very lucky to have this mindset, which I truly believe it is, as it enables me to face challenges head on. I tend to look for solutions and strategies to enable me to do what I want. Nothing is impossible, and I find this perspective enables me to get on with things in my own way.
I also believe that the work that I do, which involves meeting people living with arthritis from around the world, has also grounded my thinking, realising how lucky I am, despite the challenges I face. This isn’t to say that I don’t have my off days.
As a perpetual worrier, anxiety does play a role in my life – probably a bigger one that I usually admit to. However, I strongly believe that my work as a patient advocate has helped me to focus on making a difference using my own experiences. Having something else to focus on… to look forward to, is so important, because conditions like arthritis really can consume your life.
Do you have a particular way of positive thinking and if so, how do you implement it in those down moments?
Whenever I am faced with a difficulty, I don’t think ‘I can’t do this’… I strategise, and think, ‘okay, how can I get around this?’. I always believe that everything is possible. It may take you a little longer to get to where you want to be, but the important point to remember is that small, steady steps in the right direction will help you to move forward. In the past, I may have been overly critical on myself for not being able to do something instantly.
I used to get frustrated when I didn’t feel in control, or able to do something. I have learned to give myself the space, and permission, to take my time… to do things as and when I feel able. Sometimes, you need to rest… sometimes you may need to switch off from the outside world – and that’s okay! Never feel guilty for prioritising yourself. If I’ve learned anything over the years, it is that self-care is not a luxury – it’s a necessity. If you don’t look after yourself, others won’t either. You matter.
Do you think the upturn in mental health awareness is benefiting those living with invisible illnesses such as arthritis?
Undoubtedly, the more we talk about mental health, the better. However, just talking about it isn’t necessarily going to help. First and foremost, I think it’s important that society as a whole realises that arthritis is not just a few aches and pains… and actually the term ‘arthritis’ refers to a whole list of different conditions with a long list of symptoms impacting on both physical and mental health.
Secondly, we need to ensure that people have timely access to the right support services to help them cope. Given current resources, this remains a constant challenge. Alongside investment into restorative interventions for people experiencing mental health difficulties, we must also focus on prevention, ensuring the right support, for each individual, is available from diagnosis, with continuous monitoring over time to ensure that people are coping with their arthritis.
What would you say is the first key step in better understanding and managing the mental aspect of life with arthritis?
Acknowledging what you have to manage is often the first step towards accepting that arthritis can impact on your mental health – and that there is no shame in talking about how you feel. This is often particularly challenging for young men, as I have experienced, though I am lucky to be surrounded by an understanding group of family and friends – which really does make a difference.
Keep your eyes peeled for part two of our interview with Simon.
If you, or someone you know, have been affected by mental health issues or issues relating to your arthritis, the following organisations may be able to help.
0800 5200 520
Call free Monday–Friday, 9am – 8pm
0300 123 3393
Call free Monday to Friday, 9am - 6pm
Call free 24hrs a day, 365 days a year