Growing Pains

How being diagnosed with arthritis as a teen can radically change your life

27th February 2019

Living with a physical disability is never easy. It impacts all aspects of your being — your day-to-day tasks and chores, your career and education, your social circle, and your future life plans. These are amplified if you are a teenager; a period where those issues are already challenging.

I was diagnosed with chronic juvenile arthritis when I was 15. The condition left me in constant agony, unable to walk unaided, struggling with daily life — it also affected my friendships, my mental health and completely altered the path my life was on.

Before my diagnosis, my whole world revolved around football. Having played since I was a small child, all my friendships were based on football. I played with school mates before school and on every lunch break. I played in the same Sunday League side as my best friend, and my passion and ability meant I was captain of the school team. I played weekends and after school — with football working as an escape mechanism from a dysfunctional home-life.

Football was life

To me football was freedom. Football was life — long Saturdays spent out of the house, endless summer holidays filled with world cup willies and jumpers for goalposts. Often our group would play matches and get into scrapes with other groups from rival schools, building a camaraderie, a sense of tribal belonging among your pals.

This male-dominated way of life suited me. After school was finished, I had wanted to follow my brother into the building trade. I fancied being a bricklayer. Working outside along with other football-mad blokes seemed ideal to me.

At the age of 10, rocking the England ’96 away kit, I had no idea what was to come

Suddenly, just before turning 15, I started experiencing a stabbing pain in my right foot. Within a few weeks, the pain had gotten worse, meaning I couldn’t run and had to stop playing. I put it down to an old football injury and decided to stay away from the playing fields to give it time to heal.

Three months later, it still hadn’t healed. The first weekend of the summer holidays, between Years 10 and 11, things took a turn for the worse. My entire right foot ballooned, leaving it incredibly sensitive and unable to bear any weight.

My GP took one look and decided it was gout. He suggested — as I sat in his office with my mum — that I reduce my alcohol intake and particularly cut out red wine. I was 15 — the only wine I was familiar with was of the gum variety, at least for now. He referred me to a specialist who said I should keep off it, and gave me crutches and a huge snow boot to protect the foot.

I was shocked when the mates I’d been playing football with just a few months before didn’t know how to converse with someone on crutches and visibly in pain

I spent the entire summer cooped up, miserable. I missed my friends and wondered what they were doing with their holidays. Most of all I missed football. My condition — still undiagnosed — kept me indoors, lonely and bored. I found comfort in food and computer games.

By the time summer was over, I was heading back to school overweight, on crutches and in agony. I was nervous about seeing friends I hadn’t seen all summer looking so different and being on crutches. I questioned internally why I hadn’t seen or heard from any of them. I had sent out text messages explaining my disappearance from hanging out in the park to little response.

Fifteen-year-old boys are funny creatures. You interact, even with best friends, mostly through insults. The very idea of discussing feelings or emotions is beyond comprehension. Minor weaknesses are pounced upon and exploited ruthlessly for banter material.

They probably knew the normal response should have been one of sympathy but they simply couldn’t bring themselves to show it

Real weaknesses or conditions that are seen as too sensitive to make fun of are merely ignored. To recognise such issues would mean engaging with a form of communication which isn’t piss-taking — something inconceivable to most adolescent boys.

I hadn’t truly considered this when thinking about returning to school. I was shocked when the mates I’d been playing football with just a few months before didn’t know how to converse with someone on crutches and visibly in pain.

Rather than engaging with my pain and discomfort, they chose to ignore my condition and — because it had become such a huge part of my person — they ended up ignoring me entirely.

None of them wanted to walk around the school with someone who was slow, moving laboriously on crutches at half speed. I remember trying to tell friends about the pain and the impact it was having and seeing them fidget uncomfortably, before glazing over and zoning out completely. They probably knew the normal response should have been one of sympathy but they simply couldn’t bring themselves to show it.

It’s something Nana complained about when it was damp. It was the hallmark of the geriatric, not something a healthy, football-mad teenager had

I vividly remember moving between classes in a herd-like pack of my friends on the first day back, as they all walked too far ahead for me to keep up, leaving me trailing behind like a lame gazelle. I watched as they walked ahead without me. It compounded in my brain just how all-encompassing my condition was.

 

Aged 14, my symptoms really started to take hold

So here I was, in my final year of school, on crutches, in agony, with no friends and without the solace of football. Within a few weeks of returning to school, a specialist diagnosed me with chronic juvenile arthritis.

I was in shock. I couldn’t have arthritis. This was something old people get. It’s something Nana complained about when it was damp. It was the hallmark of the geriatric, not something a healthy, football-mad teenager had.

Doctors bombarded me with literature, with titles such as “How to live with Arthritis” and the children’s version “Arthritis and Me” replete with mawkish illustrations and passages filled with slang evidently written by someone who hadn’t been a kid for a very long time. These glib pamphlets sickened me.

With the diagnosis and the condescending literature came a gutting realisation: “I’ll never play football again.” You didn’t recover from arthritis. You couldn’t have an operation to remove it. The literature told me it was an autoimmune disease which had to be managed, not cured.

The literature talked about the importance of staying healthy — oily fish and gentle exercise. Both concepts were foreign to me. To me, exercise wasn’t something you set out specifically to do — it was a by-product of doing something you enjoyed. The thought of “gentle exercise” for exercise sake was less appetising than oily fish.

Also, with the diagnosis came the advice from the doctor to lose the snow boot and crutches. I would just have to learn to live with the pain. This made school even worse. The pain in my foot and ankle was so excruciating, I could barely bring myself to put pressure on it. Now I had to spend all day limping around a school in which I no longer had any friends. Limping is a generous term — it was more of a lurch really, with every single step causing a grimace-inducing stab of pain.

My GCSE year was about as fun as having your prostate examined by Edward Scissorhands

So I lurched between classes, often alone, often to jeers of “Oi pegleg” or “Come on, Hopalong-Cassidy”. People would walk past me, mocking the way I walked with exaggerated, lurching limps — the teachers could be so mean.

You may think that’s a joke but it was the teachers who were more inclined to make fun of me than my peers. It felt like teachers didn’t know how to handle my condition, so they approached with comedy rather than caution. I specifically remember one teacher mocking my walk and telling me to “stop walking like a gangster”.

My GCSE year was about as fun as having your prostate examined by Edward Scissorhands. I was hurt by how I was ignored and mocked, angry at life for what it had bestowed upon me. The pain meant my attendance was very poor, as some days I simply couldn’t face the effort. I flat out refused to do any coursework or revision, and when exam season came round I often actively sabotaged them — turning up for several drunk or high on pain medication. I’d spend entire exams scrawling graffiti on my desks, before giving papers a cursory glance and throwing in some wild card answers.

My diagnosis had left me angry, confused and miserable at a period when the average teenager is already prone to those kind of feelings anyway

Inevitably, my results were awful. Except for English in which I managed to scrape a respectable B grade. The head of sixth form agreed to let me go back for Year 12 to do a GNVQ, which, if I passed, would allow me to sit A-levels.

By the time I had results back for my GCSEs, I had begun to come to terms with the diagnosis. Doctors had decided on a cause of medication and fed up with being out of shape — I had reluctantly started some dreaded “gentle exercise” in the form of swimming. My condition began to be more manageable.

Going into the sixth form gave me the opportunity to reinvent myself. I started listening to different kinds of music. This became a second passion after playing football. I threw myself into reading and began writing as a hobby. These were all things which as a football-playing, run-of-the-mill lad, would have labelled you “soft” if your friends ever found out. But they were gone, having shown themselves for the fair-weather friends they really were.

My diagnosis had left me angry, confused and miserable at a period when the average teenager is already prone to those kinds of feelings anyway. Looking back now, I’m not surprised I struggled so much. Research shows nearly two-thirds of adolescents with disabilities have trouble with feelings of anxiety or depression, acting out, arguing, and making and keeping friends. Arthritis in teens can lead to isolation, something which the literature I received didn’t explain.

Indirectly, my condition led me to meeting my wife and, later, having a family

Given time, however, I eventually came to terms with it, learned to live with it and found new things to enjoy. Staying on at sixth form lead to me meeting my first girlfriend; sixteen years later we are married with four children.

I often think about how, had I not been diagnosed, I would have left school and followed my plans to be a bricklayer — and hence, would have never met my wife and had children. I would have never developed new interests which led to pursuing a career in writing. The friendship group I had at 14 would have ripped me mercilessly for even considering a career as a journalist.

Some may read this and talk about fate — something I don’t personally agree with. Things transpire, not for a reason, but because life is unpredictable. Events happen, you are faced with challenges and obstacles, and you try to navigate them any way you can. Arthritis was a challenge, which to this day still has a huge impact on my life — but you learn to live with it. It becomes a part of you, like having a third nipple or black hair. It’s just there. You can let it rule you and your life or you accept it, accommodate it and adapt.

27th February 2019