This article was first published by Scope in April 2020

About the author

My name is Joel, and I have lived with arthritis most of my life. Starting with a juvenile form when I was 11 years old and Psoriatic Arthritis in my 20’s.

In 2019, I created my blog, JoelvsArthritis to share my experiences, raise awareness and to be an advocate for those with arthritis and other autoimmune conditions. I have since written for leading arthritis charities and other health organisations.

Pain gets its claws into everything

Living with any chronic condition is tough. It’s relentless, tiring and can be all-consuming. Often your plans are dictated by the behaviour of the disease rather than your desires. From the small things such as your plans for the day, to heavily influencing your life story, for instance, your career choices.

In my situation, alongside the lottery of what each day brings due to the nature of arthritis, is the pain. I have had years in remission, completely pain-free, and at times, as during my current flare, I am in moderate to severe pain most days and nights for many months. It’s exhausting.

Pain affects your mood, sleep, relationships, ability to perform your job, basic tasks around the home, or even to care for your children and loved ones. Each day I have a balance to strike between pain management and function. Trying to manage the pain to retain a level of lucidness that matches my responsibilities for that day. It’s a constant mental struggle, and I tend to be my biggest critic.

Impact on mental health

Inevitably, living with a disability that varies and high levels of pain takes a toll on your mental health. If the constant pain doesn’t wear you down, the lack of sleep, loss of confidence or worries over job security and finances will. However, this is completely understandable and reasonable; I just couldn’t see it over the years.

I spent far too long living with my condition thinking that when I had poor mental health, it was a weakness of me, that I should have learned to cope better or I somehow wasn’t strong enough. I would feel embarrassed that having lived with something for years, I still couldn’t manage at times.

It took six months into being a parent to realise that I had lived with numerous episodes of depression, anxiety and low confidence over the last 25 years and they all coincided with flares in my chronic condition.

I went from being able to play sport, run, play the guitar, to having little in the way of hobbies and social life in the space of weeks when a flare of my condition presented itself – from playing rugby to not being able to walk unaided some days within a month. Not including the aforementioned factors of chronic pain, being off work, lack of sleep etc. that comes with these flares.

The real strength is knowing when to ask for help

Becoming a father changed my perspective on life.

I sought help from my GP and local Wellbeing Service and learned that it wasn’t what I couldn’t do that mattered but what I could do in those periods of disability. The simple things with my son. Time spent as a family. More importantly, it taught me what I accomplished when I was in better health. I completed RideLondon 100 and ran the Great North Run for charity. These are not the actions of a weak person but the mark of someone who pushes back the boundaries of the hand they have been dealt with. Who makes the most of what they can do, when they can do it.

I wasn’t weak; I was surpassing expectations and given the same set of circumstances, anyone would have difficulty in adapting and living with the pain and periodic limitations. Everyone has a limit, and it’s recognising and knowing what to do when you approach it that matters.

In my experience, chronic illness and mental health are intrinsically linked but with the right support, mindset and knowing when to be kind on yourself and to ask for help, you can make a positive relationship out of the two. It’s ok not to be ok and knowing when to ask for help is a sign of strength.

What have you overcome with your disability?

What are your experiences with chronic illness and mental health and what are your tips for managing living with a long term health condition?

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Arthritis and Psoriasis Patient Advocate, Writer And Consultant. Owner Of The Pain Company.

I share my story of Juvenile Idiopathic Arthritis to raise awareness and specialise in pain, parenting (with disability) and the mental health impact of living with chronic illness. I write and campaign for leading charities and organisations. In addition, I provide patient experience consultancy for both charities and global healthcare companies.

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