Simon Stones has lived with arthritis, fibromyalgia, and inflammatory bowel disease since childhood.
A multi-award-winning patient advocate, consultant and researcher he is well-placed to discuss the impact of pain on mental health.
It's a topic that is often overlooked, particularly in relation to chronic 'invisible' conditions.
Chronic pain can have a huge impact
Most of us can relate to having an acute injury which has caused pain, so imagine something several times worse, and more or less constant each and every day. Sadly, with most things ‘invisible’, it often goes unnoticed, and in some circumstances, ignored.
Controlling inflammation comes first
Traditionally, that’s the first focus with arthritis and chronic pain. Given the highly specialised nature of modern medicine and with different professionals each focused on their own area of expertise, it’s easy to see how mental wellbeing can be overlooked. This shouldn’t be the case.
We shouldn’t separate mental and physical health
We are human beings, with thoughts, feelings and senses. Speaking from personal experience, it is easy to visualise how pain can stop you from doing things. Over time, you may feel reluctant to undertake a certain task because of historical associations between that activity and pain.
Tailor exercise to your tastes
You don’t have to stay active just by doing what you’re told. It was recommended that I play football which I rarely enjoyed. Physical activity comes in so many forms, from yoga and pilates to tai chi. I choose what I’m going to do based on how I’m feeling. I’ve benefited hugely both physically and mentally. Rather than prescribing specific activities, we should guide people to find what works for them and, most importantly, we should maintain an open dialogue.
Arthritis impacts every part of an individual
A report published in 2019 by the Arthritis and Musculoskeletal Alliance (ARMA), based on a roundtable event, stated that emotional and mental health should be a fundamental part of managing arthritis from the point of diagnosis. They reported that depression is four times more common among people with chronic pain compared to those without pain.
It’s time to focus on people
I hope to see integrated physical and mental health support, across different health services, from primary care to specialist centres. We need to shift away from focussing on areas of the body to focussing on people. Healthcare professionals in contact with people with arthritis should be asking every individual at every appointment about their emotional wellbeing - preferably not at the end when people are about to step out of the room. It’s important to acknowledge the complexity of individuals and then work openly and honestly to talk about feelings; how to rationalise them and how to build a plan to move forward.
Isolation is a commonly described experience
Being alone can take a serious toll on someone’s self-confidence. Many people I’ve met over the years say that they’ve never had the opportunity to have an honest and empathetic conversation with somebody who truly understands what they’re going through. Enabling people who live with arthritis to connect with others is something that should be available at the outset, and a resource that is offered by a variety of patient organisations.
Whatever you’re feeling, you’re not alone
Feeling low, worried, irritated, restless, losing motivation and focus, struggling to sleep and having suicidal thoughts; when you’re living with chronic pain these can all be issues you confront. Lots of people experience them and there’s no shame in talking about your feelings. Don’t feel that you have to put on a ‘brave face’. We’ve all done it, but there’s no need to do so anymore.
Take a leap
If your healthcare professional doesn’t start the conversation, don’t be shy to start it yourself. Tell them how you are feeling and that you need some support. You need to find what works for you, not for anybody else. It may take time, and you may well have good days and bad days, but that’s life. Just remember that you matter - mind, body and soul!
Looking to learn more? Simon recommends the following resources:
Versus Arthritis: https://www.versusarthritis.org
Arthur’s Place: https://arthursplace.co.uk
The Mighty: https://themighty.com