“MY story began in May, 2013, when I was aged 13. I had just come to the end of my first year in secondary school. In the months prior to this I had been experiencing slight pains in my hands and feet. I loved sport and played a lot of camogie and Gaelic football with both school and club teams, and so I thought the pain was a sports-related injury.
I had completed my first set of summer exams in secondary school when the pains in my hands began to get worse. My mum made an appointment to see the GP and I had my diagnosis by the end of that week. I was told that I had juvenile arthritis…I could not comprehend how a person my age could have arthritis.
At the time I was about 5’11 (I’ve always been tall) and so I thought I had just been going through a phase of growing pains. I was prescribed short-term steroids to calm the inflammation and I was referred onto a children’s consultant in the CUH. They had an overview of my entire body and confirmed that this was in fact a form of arthritis.
In the months following on from this, the pains only got worse and I was experiencing stiffness in the mornings. There were even tears before school sometimes, as even simple tasks like doing the buttons on my shirt became a challenge.
I began to do my own research on what causes the disease and how to get rid of it, but I was told prevention from further damage was the main thing to be concerned about. I went from playing on the pitch to watching from the sideline, which really affected my overall mood, as sport was a great outlet for me to have fun and keep fit. School life got harder too as I soon noticed my hand would get sore after a short time from writing as well as knee pain from carrying the weight of heavy books around all day. I had tried hand supports and occupational therapy but nothing really relieved the burning sensation and swollen joints. It also began to impact my social life with friends as I was lethargic and conscious of my condition.
A few months later I was transferred to the children’s rheumatology department in Our Lady’s Children’s hospital in Crumlin. The doctors there were specifically focused on arthritis in children so I had hope that they would be able to solve it. They went through possible solutions and explained to me that the main aim was to prevent the arthritis from getting any worse, and that long-term medication was the best solution. They introduced me to a commonly used drug known as Methotrexate which I would self- inject once a week.
The next nine months were horrible. I didn’t think there was a huge improvement. In the meantime, the pain had moved to both joints in my jaw. My entire face would swell and I had trouble sleeping at night due to the constant clicking of joints in and out of place. I was diagnosed with TMD (Temporomandibular disorder) which affects the jaw joint and facial muscles. I got steroid injections into both sides of my jaw and also in my fingers with the hope that these would ease things.
The following April I met with the doctors again…I was changed to another medication which I continued to take for a while. The side effects were not as bad but I was experiencing weight loss and hair loss, while searching for alternative methods to try to cure myself. These symptoms especially affected my confidence and even my mental health began to suffer.
I excluded myself from friends and I didn’t like being in school. I stopped eating properly which only made problems worse. I ended up in hospital for a week the summer before my leaving cert as I had lost nearly three stone in weight over a very short period of time.
I felt helpless and that my life would continue the way it was going. Although it has taken quite some time, I am almost back to the person I was before any of this had happened.
In 2017, I turned 18 and I was transferred back to Cork to the adult clinic in the CUH. I discussed with my doctors about coming off medication but I was strongly advised to keep taking it, at least until the exams were over. I went against my consultant’s advice and stopped taking the medications four months before the Leaving Cert. I knew I was taking a big risk as I had no idea how my body would react, but I was confident in my decision.
Thankfully everything seemed to be ok and I sat my exams with the help of a scribe which was a huge benefit to me.
As for today, I am now in a place where I can manage my symptoms. I don’t like the cold as it still causes flare ups in my hands and in my feet but I’ve learned how to deal with difficult situations.
“I am currently medication-free and my symptoms have thankfully eased I understand both the personal and social struggles with coping with the disease but there are ways for everyone to become comfortable and confident in how they deal with their conditions. It just takes time!”