At times, the most life-changing moments pass you by without a second thought at the point of circumstance. So, in fact, at the time, they are not life-changing at all, not like the tremendous jolt of a traffic accident or death of a loved one. For many, these defining moments of one’s life are not recognised as such until many years later. It is a gradual, slow burn towards the inevitable impact that you don’t see until it’s too late.

My life-changing moment came when I was ten years old. When I first experienced that now unforgettable discomfort of your body attacking itself without good reason. Without incident. I first experienced arthritis as a child, but I didn’t recognise it’s impact until I became a father myself, some 25 years later. By this point, I had accumulated a lifetime of scars in a young person’s body.

These are some of my deliberations of juvenile arthritis and me, at the time I was a child myself.

Kids that didn’t quite know their place in the world

Chronic illness feels unfair by its very nature. We have a social construct implanted into us at a young age that leads us to believe that when something hurts, we go to a doctor, we are diagnosed and prescribed some form of treatment to make it better. So when you are given a label of being chronically ill, incurable, something that can only be managed and not resolved – no surgery or bottle of pills can take that problem away for you. ‘There is no magic bullet‘, as a clinician once said to me.

Chronic illness in children feels particularly cruel.

Protecting your children’s innocence feels like one of the most significant unwritten rules you inherit as a parent. As a toddler’s parent, I feel like I curate my son’s experiences, holding on to a high level of control of what I expose him to and what I protect him from. It’s a terror as much as a privilege. Although years from it, I already break out in cold sweats over thoughts of the first time he tells me he is being bullied at school, his first pet dies, or a girl rejects him. I can only guess, therefore, what it might feel like as a parent to find out that your child has a long term health condition. Something that can only be managed rather than cured. I can, however, now appreciate the pressure my health put on my parents all those years ago.

A home from home

Hospital stays dominate my childhood memories. Weeks spent on the same children’s ward in an old Victorian building. Rooms with windows so big, it felt almost by design – an incentive to get better and back out into that big world we could all see we were missing out on. I spent so long in that wing that I had my ‘usual’ bed, complete with mattress topper, my favourite things ready from the games room when I arrived (a cd player and games console). My favourite two or three nurses would come and sit with me for long talks at night whilst the younger children slept, all on first names terms, for goodness sake! It felt like a second home.

I was always in the first bay of three, each bay consisting of six beds. Sometimes I was in bed number one. I remember a brief stint in bed number three, but I always returned to bed number five as soon as it was freed up by some lucky soul who had only broken a leg or had their appendix removed. It sounds cruel now, but as a grumpy 11-14-year-old, angry at the world, I was always very envious of the ‘one-night stopovers’.

Bed number five was the cruellest bed. It faced the exit. So not only did you have the crushing disappointment of seeing the parents of other children arrive each time the buzzer went, but you had the desperately excruciating view of watching your parents leave. That short walk, of ten metres or so, hurt far more than any test or pain the condition caused me. To this day, it’s still the upsetting memory my mind conjures up every time my son cries when I leave him at nursery or go to work.

I was in and out of that ward so much that I even made friends with the ‘regulars’. I became pen pals with kids dealing with other chronic illnesses or disabilities, and if you were admitted for a couple of weeks for ‘tests and treatments’, it was unusual not to see one or two from this gang of kids that didn’t quite know their place in the world.

This photo – one of the few that I have around the time of these experiences, was actually sent to me by one of these pen pals. I had sent it to her with a letter, and she still has it to this day.

The punch that leaves you staggering for a lifetime

My experiences weren’t pleasant – far from it. There were the ‘treatments’ – the joint injections, trials of drugs that either damaged my liver, ate away at my stomach lining or brought me out in allergic reactions, hydrotherapy as a 13-year-old with pensioners, painful daily physio and being placed in traction where doctors hung incredible weights from my legs until I screamed so much that the other kids couldn’t sleep.

Then there were the psychologically damaging events – many closely linked to the treatment, as you can assume already, but the more subtle experiences that, like the life-changing moment, you don’t realise just how damaging they are until you are far older. These are the memories of being asked, ‘why are you here?’ in the rheumatology waiting room by people sometimes 60 years your senior. The being told what your family and siblings got up to at the weekend whilst you sat in a hospital bed. Missing an entire year of school, only to return to see that your ‘best friends’ have replaced you. The not being picked for things in case ‘you overdo it’ like people know what’s best for you. Falling over in the playground and watching people encircle you, laughing as you struggle to get back to your feet. The doctors asking your parents something as if you are not laying there whilst they poke and prod – like you are somehow not qualified to answer or, worse, a hint in their voice that you might not tell them the truth. ‘Is he worse in the mornings?‘, ‘does the limp ease with exercise?’, ‘does he limp when he thinks you’re not looking?‘ – I’m here! I’m literally laying right f***ing here.

Do you want to know why so many of us chronic illness types grow up to be adults that don’t know how to pace? Why do we feel this burning need to offer value, contribute and overdo it when we are well to try and make up for the times we are not? These experiences are why. Because I promise you, at some point, every single one of us has been made to feel like a fraud. Doubt our experiences. Prove our experiences. Somehow quantify our discomfort – and when those experiences are as a child, it stays with you for life. Ingrained into everything you do. Every decision you make. Every effort you make with and for others.

It’s life-changing, but when it happens, you have no idea of the significance that moment had. The weight the punch carried. The punch that leaves you staggering for a lifetime.

A life of uphill walks

Living with arthritis as a child, you learn to be old before your time, which is ironic for an illness often misunderstood as being an ‘old person’s disease’. You learn to live in discomfort, self-manage, be independent, advocate for oneself and pretty quickly, that illusion we create for our children of boundless happiness and infinite possibilities is shattered prematurely. We can no longer curate the experiences of children when they have arthritis. We are no longer in control – from dream makers to the people who have to leave the ward to care for siblings or go to work to pay the bills.

Arthritis changes lives. And as much as I was forged in the fires of those experiences – it made me confident, not afraid to speak up, challenge, fight, lead – it also took far more away from me than it ever gave. Arthritis changes lives but not just the child that suffers from it; the parents, grandparents, siblings and those best friends, too.

So, as much as I want to end with a message of hope or say that everything will be ok, it wouldn’t be a faithful account of the reality of a man who’s spent over 25 of his 36 years on this Earth uncomfortable. I’m afraid you won’t find me using current popular taglines of ‘my arthritis doesn’t define me’ or that I ‘thrive with arthritis’ because it does define me. My arthritis has stopped me from doing incalculable things. It’s kept me up nights on end. It’s opened doors to places of pain I wish I never knew. It’s most troublesome of all that it’s pushed me to the absolute breaking point of my mental health’s capacity to cope.

I don’t thrive or flourish with arthritis because I could be so much more without it, and to dismiss its impact would be doing a disservice to myself, those that have suffered at the hands of my condition and everyone else in my position struggling with the pain, the fatigue and the challenge of it all—the life of uphill walks.

You say what you need to tell yourself to get through the day, but I am honest with myself. Perhaps too brutally, at times. But my juvenile arthritis is me, and I am juvenile arthritis, and I will never walk alone. And whatever I do, whatever I achieve, whatever I fail at – I do it with arthritis by my side – a life-changing moment that hangs forever in my shadow.

Postscript

I like to offer hope. Support others. It’s what I do. However, this piece written specifically for World Young Rheumatic Diseases Day was designed to raise awareness. Sometimes we have to give hard-hitting accounts to start conversations. To wake people up to the realities of our lives.

If this piece upset you, I apologise – drop me an email, and I will signpost you to support. However, I cannot apologise for telling the truth, as telling my story, warts and all, is the only way to get people’s attention. To make a change. There will be many days when I tell stories of heroes, celebrate arthritis warriors overcoming their challenges, but today it’s about how arthritis as a child shaped and scarred me.

Thank you for your understanding.
Joel.

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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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