Biting into my first apple after so many years was brilliant.
To eat something so crunchy without experiencing the unfathomable pain I had previously is something most people take for granted.
Just over a year earlier I’d had a complete jaw replacement after several years of suffering from arthritis. Contrary to popular belief, it is not simply an ‘old person’s disease’.
I was eight years old when I first remember waking up with stiffness, but I didn’t understand why. My parents and I thought these were simply growing pains, but by the age of 10, I was struggling to function and my fingers rapidly became more inflamed and swollen.
Only just into double digits, and I was diagnosed with Juvenile Polyarticular Rheumatoid Arthritis (JPRA). I went from this bubbly, confident girl to one who had to learn to cope with all this change.
My condition is characterised by chronic inflammation to the joints – caused by the immune system mistakenly attacking the cells lining them when you are still growing up.
My JPRA was particularly aggressive when I was young, and it caused lots of damage to my joints. I had to wear a neck brace and sleep in custom-made leg and arm splints.
I ended up missing quite a bit of school, which hugely impacted my confidence and my academic performance. My life became more about getting through each day instead of playing outside and being carefree like all the other children.
I had to stop all the hobbies I enjoyed: gymnastics, ballet, athletics, competitive swimming. I wasn’t allowed to do PE; I had to sit and watch the others, which was devastating.
My whole world changed overnight. I felt quite alone and confused as I really didn’t understand the fight that was going on in my body. Because I wasn’t visibly ill, some of the children in my year started to bully, tease and make fun of me.
As I got older, my joints could not deal with the normal stresses and strains of life and eventually it became clear that I’d have to undergo surgery. I really wanted to continue with life as ‘normal’, so I put on a brave face and didn’t divulge much information with my friends; nothing about my finger operations at 15, wrist replacement at 17, or wrist fusions in my early 20s.
When I left school at 18, I started training to become a nursery nurse. I figured that if I worked the way ‘normal’ people did then my illness could stay hidden. I did this for more than 30 years.
I really was the master of disguise, playing down every surgery and telling very few people about them. At times I wonder how I managed at all. But having my two sons in my early 20s gave me all the strength I needed. Being a mum was all I ever wanted in life.
Then 2018 came and the jaw pain I’d been experiencing suddenly got very intense to the point where I could no longer eat or sleep. For a year I endured the worst agony I’ve ever felt in my entire life.
I was on 3,600mg of painkillers every day and woke up each morning with dread at what I would have to face.
I waited for a gruelling year for surgery to completely replace my jaw, which is unfortunately common.
In the months leading up to my operation, my jaw had basically collapsed due to the deterioration of my joints, so I had to have a series of steroid injections as well as surgical ‘wash outs’ to get rid of some of the bone debris.
I also had to have a muscle graft from my stomach to my jaw joint at one side to hold it up and screws into the other collapsing side to allow me to open my mouth enough for liquids and purees.
Talking was difficult due to the severe pain.
The operation was 8.5 hours long. Doctors replaced my jaw joint with a 3D printed model made of surgical steel and plastic, and 25 screws were drilled into my face.
I was in floods of tears when I came round – tears of relief and of hope for the future. I knew it was a turning point in my life. The pain immediately afterwards was different and, although I had to get through the long recovery of 18 months, I could feel that things were going to improve and I was starting to see the light at the end of the tunnel.
My recovery is still ongoing and I still get a burning sensation every time I chew, as well as intermittent nerve pain but it’s like night and day compared to what it was before the operation. I feel like smiling again.
I’m 41 years old now and, unfortunately, I know that more surgery will be inevitable as my underdeveloped joints just don’t stand everyday life like other people’s do. But it doesn’t scare or worry me.
Surgery is tough but I accepted it as an inherent part of my life a long time ago. Instead, what really scares me is not being able to do simple things – the other day I was trying to cut some vegetables, but my fingers ached too much. I just broke down in tears because all I wanted to do was make dinner for my sons and I hated having to ask for help.
Arthritis is a lifelong illness and you never get away from the pain and the challenges it throws at you.
As Covid-19 impacts hundreds of operations, those with arthritis need clear communication about when they will be treated.
I know what it’s like to live with chronic pain for so long, now’s the time to finally give arthritis the attention it deserves.
Joanna is supporting Versus Arthritis’ Impossible to Ignore campaign.
My Life Through A Lens
My Life Through a Lens is an exciting series on Metro.co.uk that looks at one incredible photo, and shares the story that lies behind it. If you have an experience you would like to share, please email [email protected] with MLTAL as the subject.
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