“It’s important that children’s emotions and feelings are heard and understood. This could really help a child feel validated in navigating their own JIA journey.”
After being born an otherwise healthy baby, contracting a chest infection when I turned two is when my mum started noticing certain changes. I began to lose balance easily. I would ask to be picked up a lot and would often cry in pain for no reason. I would lie awake at night and cry. My knees were swollen and red most of the time with no obvious trigger or reason as to why.
After seeing the GP multiple times with no answers and no progress, she sought a second opinion as I wasn’t getting any better and the GP just passed it off as ‘growing pains’. The doctor had labelled me as an attention seeker and surmised I was a ‘needy’ child.
Soon after this, even more of my joints became inflamed including my ankles, elbows and hands. The new GP agreed to do some blood tests as he was concerned this was more than growing pains AND suspected a rare disease that previously hadn’t been picked up. After a few more tests, I was diagnosed with juvenile-onset Still’s disease at the age 4. Nowadays it is known as Systemic Juvenile Idiopathic Arthritis (sJIA). Unlike other types of JIA which are autoimmune, sJIA is autoinflammatory. (You can read more about different types of JIA here).
I’d been suffering for two years at this point with no treatment other than over-the-counter pain relief and anti-inflammatory medication. This was particularly hard for my mum to see her child, who was once so full of life, in so much pain. I began on stronger prescribed anti-inflammatory medicine after the diagnosis.
Unfortunately, there was no change or improvement to my mobility or pain. I was put on short-term steroids with the aim of controlling the JIA and in the hope of bringing the inflammatory markers down (which are measured by blood tests). At that time, back in 1991, not a lot was known about JIA. I became part of many research studies and trials. As part of this I trialled many medications and various treatment plans that they believed might help me and other children suffering from JIA. I was later put on Sulfasalazine (a disease-modifying anti-rheumatic drug, or DMARD for short) to try and control my flares. Mum recalls me not reacting well to this. She says that if anything it appeared to make me worse. I was still struggling to walk, suffering fatigue and I found it difficult to join in most activities that children my age were doing.
This was worrying for my mum. I was only 18months into my diagnosis and arthritis was already affecting every aspect of our lives. At the time, I was in infant’s school and I was already missing many lessons due to JIA flares, doctors’ appointments and physio / hydrotherapy sessions. I found it hard to form strong friendships and maintain them. We feared how much worse that would be as I grew up and went to junior school and then secondary school.
When I was 8 years old, I was put onto methotrexate. At first, my consultants were reluctant to start me on methotrexate because of the side effects and how this would impact my day-to-day life at such a young age. At the time, not many children my age were on methotrexate.
I had an amazing physiotherapist called Alex who I saw multiple times a week in the mornings for physio as well as hydrotherapy in a heated pool. I became a bit of a fish at a young age and loved being in the water. The physio work afterwards at home in between sessions was not so enjoyable but this was an important part of living with arthritis and something I had to get used to. I soon began to recognise that the pain and swelling would be worse if I didn’t do my physio regularly so getting it out the way was how I used to tackle it. I learnt that 10 minutes of feeling uncomfortable would potentially give me hours of tolerable pain afterwards. I was given made-to-measure splints on my arms and legs to wear during the night to try and minimise the major joints movement whilst I slept. I would usually get new ones made every 12 months as I was growing. My sleep wasn’t great in childhood and it wasn’t long before I dreaded bedtimes because of the splints and pain I would endure through the night only to wake up in the morning to do it all again. The less I wriggled in my sleep the less likely my joints would be inflamed the day after. Attending physio meant I missed school lessons and often fell behind with academic work. I also wore supportive hand splints at school to help me with my dexterity and handwriting. It made me self-conscious as I was the only child in my school to wear them and I just wanted to fit in without standing out.
Although I was part of the girls’ football team at school, I didn’t really enjoy PE or doing anything remotely sporty because of the pain. I would also struggle to get changed after PE and often be too afraid to ask for help. I did however throw myself into singing, dancing, acting and anything musical. I was part of the school choir and loved music from an early age. I played the lead role of Annie aged 10 in my school drama production which I loved. Although I wasn’t the most confident child and often struggled socially, I got lost in music and found a real solace in singing and being involved in anything music related. It gave me the time and space to forget about everything and be somebody else in that moment.
High school was difficult at times. They were aware of my condition but the lack of support from school would feel like another mountain to climb. My JIA was invisible a lot of the time so I would look fine to others. Teachers found it hard to understand that on some days I could do an activity independently yet another day I would often struggle and not be able to complete it. They rarely took my fatigue or side effects of my medications into consideration at school. I would misbehave just to avoid PE or doing anything that would cause me pain or make me stand out from my peers. Trying to calmly explain how difficult I found day-to-day things felt like I was talking to a brick wall and I was dismissed or ignored. This resulted in countless detentions and disciplinary action. On school reports they would describe me as “lazy”. It was difficult for me to fathom why people could be so cruel and judgemental instead of trying to understand me and my JIA. My mum struggled to get any support from my teachers and I was left confused as to why teachers didn’t believe me. I felt so alone at an age when my body was already changing so much. I left high school at the start of year 11 but was able to go back and sit my GCSEs the following summer. In that time, I was also diagnosed with osteoarthritis in my major joints. Because of the turbulent impact this had on me mentally throughout high school, I did form a negative relationship with my JIA. The lack of understanding and compassion even after trying to educate teachers on juvenile arthritis left me feeling like I was a burden. Reflecting back on this now as an adult, I do wish I had more courage to have been more assertive and not been so hard on myself for the days when I struggled.
I went to college after my gaining 11 GCSEs but unfortunately left three months later due to the pain in my hips and how aggressive my JIA flares were. I was bed bound at times. The cartilage had worn away due to osteoarthritis and I underwent numerous failed operations to try and prolong the time before having to have a hip replacement. Three years after being told I was too young for a hip replacement, at age 19, an orthopaedic surgeon finally agreed to give me a new hip. They had tried an arthroscopy to prolong the joint but unfortunately there wasn’t much they could do because the damage was so severe.
By my mid-twenties my JIA was under control thanks to taking both etanercept (a biologic drug) and methotrexate combined. This minimised the frequency of major flares and reduced inflammation. I still relied on painkillers because my right hip failed only 8 years after the left one was replaced. After two failed arthroscopy operations and countless physio sessions, we had exhausted all other options and I was given a total right hip replacement. I remember my JIA flared during my recovery. I was spending long periods of time sat down with restricted mobility and only moving to exercise the new hip. Because of the long periods of sitting down, my joints would seize up easily. Also, due to infections after surgery I had to pause my biologic medication for JIA to take antibiotics. Over the following months this meant I had more frequent and severe JIA flares. When I was 30, I was also diagnosed with psoriasis and psoriatic arthritis. I felt more prepared with this diagnosis having arthritis from a young age but I knew that the different medications would be another unpredictable journey. I feel a fully-fledged gold star member of the arthritis club now juggling different types of arthritis for over 30 years so it’s certainly taught me resilience and it has become a huge part of who I am.
I couldn’t write my story without talking about my relationship with my mum. For someone who didn’t even know children could get arthritis she has forever been proactive in learning, growing with me and expanding her knowledge on my condition. After my diagnosis, mum gave up her career so she could look after me when I was too poorly to go to school. She struggled financially but still learnt to drive so that we didn’t have to rely on taxis to get me to school and hospital appointments. I know at times she probably felt so helpless when I was in pain. She probably even felt that she wasn’t doing the best job as a mum especially when I allowed my poor attitude to dominate my teenage years and I probably didn’t behave as well as I should have. She is kind, patient, fair and always the level head when I’m struggling. She still helps me during my flares and remains a positive role model in my life. Her guidance and support is priceless. We have a stronger bond than most and I have to thank JIA for that. I also must thank the chronic illness community online. Since opening up online more about my JIA and other chronic illnesses, I’ve found it comforting speaking to other people who are affected by JIA. It’s allowed me express emotions that most people wouldn’t understand. The online community offer me advice, lift me up and continuously teach me things about myself that I never knew. There is no judgement and I feel lucky to connect with so many inspirational people who I can now call my friends.
My JIA will always be part of who I am. My first ever memories as a child involve JIA so I have never known life without JIA. I have never let it define me as an individual and I don’t let it stop me in thriving in other aspects of my life. I strive to have a life which is fulfilling and happy. I know my life is different to most and my condition is often still invisible but I hope my story is relatable to other children who have JIA or rare rheumatic diseases. It’s important that children’s emotions and feelings are heard and understood. This could really help a child feel validated in navigating their own JIA journey. Children should feel unapologetically free to express themselves and feel confident in their own skin and form a healthy relationship with their JIA and bodies in general. If children were supported to live as authentically as they can with no regrets and no judgement, it can only be positive thing. Self-awareness is something I learnt from a young age which I still feel is integral to my day to day life living with JIA. Raising awareness and educating others about JIA and other rare rheumatic diseases is so important. Juvenile Arthritis Research provide support for children living with JIA and their families. They have put a lot of hard work into creating resources and other forms of support for children and families. They enable patients to be involved in research too. Since my diagnosis the science into juvenile arthritis has advanced which makes me hopeful for the future. Growing up, the support was minimal so I’m grateful to Juvenile Arthritis Research for supporting families and helping them feel less alone with it all. It will make such a huge difference to their lives.
If you are concerned that a child or young person may have JIA and would like to know more, please visit www.thinkJIA.org
For support at school, please visit our Parent Zone. Schools can request an information toolkit to support children and young people with JIA in their setting at www.jarproject.org/toolkit
Many of the resources we have developed can support children and young people at school and with explaining their condition to others such as our "I have JIA" cards. You can access these here.