It took becoming a parent myself to realise the strain my juvenile arthritis had placed on my family. Arthritis stole from my parents, siblings, my education and my friendships. For the first time in over 20 years, I’m writing down my experiences as a child with arthritis.
Please note, this will easily turn into a longread. For now, I’m publishing the high-level details but there will be numerous edits and additions to this article, given it is a defining part of my arthritis story.
An ‘old person’s disease’ before my 11th birthday
I was diagnosed with Juvenile Idiopathic Arthritis (JiA) when I was between 12 and 13 years old but I had been having symptoms from around my 11th birthday.
I’ll never forget how it started, it’s funny how those life changing moments turn out to be your clearest memories. We were having a family day out in Great Yarmouth. It was summer of 1995 before the start of the school summer holidays. We’d spent the day at the beach, eating treats and playing on the 2p machines. One of those childhood memories where you recall it as the perfect day – if there was arguments, you don’t remember them. Only the good stuff.
We were walking back to the car and I noticed I was struggling to keep up with the rest of my family. I had this weird stiff feeling in my hip that I hadn’t really experienced before. It was like I was walking with one leg wading through water. It was my left hip, if I recall correctly. My dad noticed and told me to hurry up. I explained to him my leg was stiff, nobody gave it a second thought, myself included.
First taste of isolation
The next part of the story is a bit blurry in places. I remember feeling nervous as hell going to high school in the September of 1995 having spent virtually all of the summer holidays laid up in bed.
Going to high school for the first time is daunting as it is. It’s even scarier when you missed the last couple of weeks of middle school and the whole of the six week summer holidays whilst your friends were out socialising. Preparing each other for the next big step in their childhood journey. It may have only been 8-10 weeks of separation from my friends but as a 10-11 year old, it might as well have been a year.
Turning up at high school with a limp when you didn’t know the cause, was even harder to explain.
The long road to diagnosis
It took around two years to get a diagnosis of juvenile arthritis and by this point my right knee was also a big problem. It was much more painful than the hip and I had developed a severe limp; needing to wear a brace to keep my leg straight when I beared weight on it.
Until very close to the diagnosis, I don’t recall juvenile arthritis even being a possibility myself or my family ever considered. Although looking back, I remember lots of questions about my grandparents. Whether there was any history of colitis or crohn’s and every single appointment starting with an examination of my fingers and nails.
There was no Google back then. All through my childhood I could never understand why they were looking at my fingernails or interested in digestive problems. Obviously when I started getting rashes around the age of 18-20 I realised they were trying to determine what type of arthritis this would become. Flaking and pitting of fingernails is common in suffers of psoriatic arthritis.
Kids don’t get arthritis
The main stumbling block was that my arthritis was and never has been ‘classic’ or obvious. It doesn’t often present on blood tests in the form of high CRP or ESR results, or other inflammation markers. Back then my joints were never hot to the touch or swollen like they are now. Frustratingly, x-rays never showed anything either. So I cut my doctors some slack. My body certainly didn’t make it easy to diagnose what was happening back then.
Prior to diagnosis, the following was touted as potential suspects and subsequently ruled out. I hate to think what else the doctors considered, this was only what they told us about:
- Growing pains
- Shin splints
- Sports/muscle injury
- Osgood–Schlatter disease (OSD)
In fact, my first doctor was convinced that it was OSD for some time until the affected joints started changing. They even put me in a week of traction and hung weights off of my leg, convinced it was growing pains. I still recall that week as one of the most painful of my life.
After what felt like an age, I was eventually moved out from pediatrics to rheumatology. One day a new doctor assigned to me noticed a flakey fingernail. That combined with the other symptoms and the fact that a grandparent on one side had rheumatoid arthritis, colitis on the other side of the family – juvenile arthritis was confirmed.
The hospital years
I often talk on this blog about feeling like a burden and even at 11 or 12 years old, I did. My dad was a firefighter at the time, working as a painter and decorator on his days off. My mum, a stay-at-home housewife. I am the eldest of four that my parents had under the age of five in their early 20’s. I only have the one child and I’m exhausted. I have no idea how they managed with four toddlers/babies.
In those early years of diagnosis and into my teens when doctors were trying to control the spread, the primary approach was to admit me to the children’s ward for the week or two. They would try new drugs, physio, tests and observations and then let me home at weekends. This allowed them to monitor me closely, have 101 student doctors come and poke, prod and interview me plus it saved my parents the 30-40 mile round trip to and from the hospital.
Living with arthritis is tough, being a parent is equally as challenging but pain and parenting is a very difficult combination.
Given some of the nasty side effects I got from the trial and error nature of the treatment, I was glad I was there at times. One drug gave me crippling stomach cramps that caused me to scream the place down for a couple of days. Another brought me out in blisters when I went out in direct sunlight. I was a guinea pig but at least I had help at hand and I was interesting to them. I can tell you it’s much harder as an adult with arthritis to get the same urgency and attention. Back then, once we had a diagnosis, trying anything to control it was better than the pain I was experiencing.
I remember having mixed feelings back then. On the one hand, I was glad it was me. As the eldest of my siblings, I’d rather it was me in pain than them. On the other hand, I felt sorry for myself. There were times when I was outright miserable and bitter.
The early days were a novelty. I mean, what kid doesn’t want to stay in hospital at some point in their childhood? Later on, I’d go on to wanting to throw a chair at any kid I heard at school say ‘I wouldn’t mind breaking my arm, so I can go in hospital for a bit’. You literally have no idea.
As the weeks turned into months, summer holidays after summer holidays passed and I missed out, I grew tired of it all. My dad would pop in before and after every shift at the station. My brother and sisters would maybe come up once or twice a week but at some point I stopped living in the present. I was always clock watching, how long until they have to leave? Or dreading when my dad had a couple of days off as he’d have to go out of his way to come to Norwich.
You became familiar with certain cues like the light fading outside, evening meal being cleared away or when you were told the doctors wouldn’t be doing their rounds that day. Your stomach would drop and you’d start looking at your parents body language to see if they were getting ready to leave for the day. I hated it.
I guess it was a mix of separation anxiety and not enjoying the moment that still lives with me today. I’m always worrying about what’s next, rather than appreciating what’s now.
Today, I can’t watch films where someone is left behind against their will without bursting into tears. The most embarrassing example being the remake of the Planet of the Apes. When the chimp was left in a facility and is trying to communicate to his owner not to leave him as he walked away, I genuinely cried for almost an hour! My wife had to pause the movie.
It feels pathetic writing it down but you have to remember where it comes from. I had a very different experience to most children; in years when you are already confused enough as it is. My body was changing like all teenagers, except mine was also destroying itself.
Two memories stick with me from that period that I still feel guilty for today. On one evening, I was so depressed at the thought of my parents leaving that when they headed off and went out of sight, I cried out in pain, causing them to hurry back around the corner. Yes, I was in pain but not the physical discomfort that I claimed. I was hurting emotionally. I’m pretty sure they knew it was too ‘well timed’ but as a parent today, I feel guilt for causing them unnecessary worry and heartache.
My second memory was less upsetting. One day my parents came to visit and they told me that the family had been out to greyhound racing the night before. Although I never showed it, I remember being so angry and upset. How dare they go out and carry on as normal without me? I now realise how selfish of me that was. Why should my brother and sister’s lives be on hold because I am unwell?
All this time I was in and out of hospital, everybody suffered; not just me. My brother and sisters missed out on holidays, days out, things we would have done if I wouldn’t have needed to be so close to the hospital. They probably missed out on my parents attention too. Although I’m sure they did everything they could to counter that.
My parents must have been sick with worry. Not to mention all the extra expense of driving back and forth to the hospital. They were probably as exhausted as I was. But as a child/emerging teenager, I couldn’t appreciate that at the time and I feel guilty for that.
See, arthritis isn’t just about the individual. The pain, disability or limited career options. It’s about everybody around that person too. The family and loved ones supporting them and any relationship they go on to have.
Arthritis is changeable. Flares dictate everything. I’ve started relationships with people perfectly healthy and years later, when things are much more serious, arthritis can strike you down and change the dynamics of everything. Applying immense pressure onto what were perfectly secure foundations previously.
You have to plan ahead. Decide what information to disclose and when. Ensure that somebody is equipped to support you and understand what they are signing up for without sending them running for the hills. Same goes for employment. I’ve given one employer a shock and it didn’t end well for me. So now, from day one, I say I have a disability. Even if at the time that might be hard to believe from just looking at me.
Arthritis doesn’t discriminate, it doesn’t even care if you have arthritis or not, it’s going to change your plans. I’m just sorry, mum, dad, that I didn’t appreciate that and everything you did when I was a child.
Arthritis in children is a difficult subject. You are fighting against strongly-held opinions in the general population that arthritis is an old person’s disease. Something that is secondary to age and wear and tear. It’s also difficult because it’s not something you can cure and it goes away. It’s a life changing disease, often progressive and everybody’s journey with it is different. Some get lucky, like me, and get long periods of remission and other don’t. This makes it difficult to talk about and support individuals and families because the path isn’t set at the point of diagnosis.
The positive from these stories however, are that these kids will grow into the strongest, most compassionate people you know due to the challenges they had to overcome. I was so much more resilient as a teenager with arthritis than I am an adult with arthritis. But when I describe myself as weak these days because the pain beats me or I happen to lose the fight that day, people remind me of what I am doing to raise awareness. What I have achieved despite my disease. My writing serves as a reminder of what I can and have achieved on those bad days.
Arthritis didn’t break me. It made me who I am.
If you are a child with arthritis or parent/carer of somebody with JiA, I would highly recommend checking out the resources on the ThinkJIA.org website.