As part of World AS Day on Saturday 6th May 2023, we are sharing stories from some of our community about their journey to diagnosis and their experience of living with axial SpA.
Chris shares what it was like getting a diagnosis at a young age, living with axial SpA for over 30 years and why it’s important to raise awareness about hidden conditions and chronic pain.
I grew up in a family that was always active and loved sports. But at the age of 10, I started to experience pain in my heels which started to limit my physical activities. Gradually the pain spread to my knees and hips and on visiting a GP often enough I was referred to a Rheumatologist who diagnosed me at the age of 11 as having Juvenile Arthritis. My first thought, if you’re lucky like I had been up until that point, is that illnesses are temporary. The concept of a chronic condition, when you are 10 or younger, is a confusing concept to absorb. I also struggled to communicate my health issues which was down to a strong feeling of shame – which would continue to affect me throughout my life. By my mid-teens, my back, pelvis and neck were now all displaying similar symptoms of stiffness and inflammation which added much to the fatigue and lethargy.
I began to struggle with my masculine identity somewhat. I was no longer a strong, confident boy who could demonstrate moderate prowess on a sports field. I became a spectator to my brother and peers in the rugby and athletic teams from the sidelines.
Just as I was leaving home to start university to study Architecture at the age of 17, I received a letter from my Rheumatologist informing me that I had an updated diagnosis called axial SpA. I didn’t really know what this meant other than now I knew I was an adult with a chronic condition. I tried various anti-inflammatory medication to help with my symptoms but I would frequently get stomach ulcers which were painful.
I continued to struggle to communicate about my axial SpA to my friends and more than often just accepted that their perception of me was that of a cynical kind of guy. No one knew that I would lay on the floor of my bedroom crying in pain. My flatmates just thought I was fairly downbeat. To be fair I was. But there was no visible reason for it so it is hard to receive understanding or empathy.
On entering the employment world I faced the dilemma of how to notify my employer. Chronic health problems are a tricky issue to bring up. You have a problem that doesn’t necessarily mean you will miss work but you will undeniably come across as someone who lacks energy or possibly enthusiasm purely because you are sitting at a desk in constant pain. This was a learning curve for me when I moved to Edinburgh to work and I wish I had communicated it earlier in my career.
In my late twenties, I started on biologics and found them to be very helpful. They didn’t alleviate all my symptoms but the edge was definitely subdued and I found myself able to exercise with less pain. With this, my confidence improved and I could experience what I felt was some sort of improved body image and confidence that led me to be more sociable, go on dates and generally try to enjoy life more. I met an amazing partner and we have a beautiful daughter who I will always encourage to share any issues or challenges she faces – visible or not!
I was diagnosed with Crohn’s a couple of years ago and the level of understanding I received from people by comparison with axial SpA was night and day because the condition was wider known.
As a man now over 40 and having spent 30 years living with chronic pain, I realise why it’s so important to communicate and share about your condition and how it impacts you. If any young men are experiencing a similar issue of dealing with shame and hiding an invisible condition, I would urge them to be brave and accept that they have to find a way to vocalise their problems. We are moving into an age where discussing hidden health problems such as mental health problems is becoming more normalised and this must include invisible chronic illnesses. I strongly believe that methods of communication should be taught alongside any physical management of an invisible condition. Growing up, one of my favourite movies was Teen Wolf about a young man going through some confusing physical transformations whilst becoming a man. The end message though is that if you try to be the best version of yourself, you will be fine and it will keep the wolf at the door.