RAiISE Your Voice – Niamh

RAiISE Your Voice is a series of blog posts in which we provide a platform for young people to share their stories and speak up about issues they face whilst living with invisible illnesses and conditions.

Growing up with JIA – Niamh Costello, Ireland

My name is Niamh Costello, I am 19 years old and I have had Juvenile Idiopathic Arthritis since I was 3 years old. It only seems like yesterday when I crawled into my parent’s bedroom on my hands and knees. I was screaming in agony and I could not walk. I was this tiny frail body with a huge swollen knee that had been bothering me for weeks now.

Looking back, my Mam thinks that I was born with JIA. I was always slow to walk, I would get tired easily and when I could I would crawl and drag my left leg behind me. I was always napping and would be extremely tired after playschool. Although it was my knee that was the ongoing problem I would always point to and hold my leg when it was sore and I would complain of it feeling tired, I suppose I was too young to articulate what pain was.

I was always picking up infections and viruses so when my parents took me to my local GP that morning I was told that it was just another virus, or that I had fallen on it and to go home and rest it. It all went downhill from there.

A couple of weeks later I was admitted to hospital with a rash and a temperature and this swollen knee that was getting bigger by the day. Lots of tests and scans were done and one day, a doctor who had done some of his training under Paediatric Rheumatology, recognised my symptoms and referred me straight to Our Lady’s Children’s Hospital in Crumlin, Dublin. That is where my lifelong journey of JIA began.

I was diagnosed a couple of weeks later and was put on a high course of steroids. At the time there was no paediatric rheumatologist in the whole of Ireland so little was known about JIA and its prognosis. It was going to be a case of trial and error with my treatment. The oral steroids didn’t work so I was given a steroid injection directly into the knee joint and the fluid was drained. And believe it or not that was it for 4 years! I went into remission and I thought I would never have to see a hospital again. Unfortunately I was wrong.

I remember the day that it came back, I was about to go on a family holiday to England. I remember sitting on a picnic rug and screaming because I couldn’t get up off of it and I looked down to see a familiar swollen red knee back again to haunt me. We went on the holiday which was a disaster. I spent most of the day in my 4 year old sister’s buggy as I physically could not walk. I couldn’t stand for long periods of time, I was drained and in agony 24/7. No pain relief was helping and I just wanted to go home. I felt sorrier for my family as I felt like I had ruined the holiday. The trips to hospitals started again and this time I wouldn’t get a 4 year break.

My illness soon started to spread to other joints which made my day to day life that bit harder. Getting up for school every morning was a struggle. I would have to get up a half an hour earlier during flare up times so that my mam could lift me into the bath and help me loosen out my joints sol that I could attend school. At the start, I would stay off school if I was having a flare up and my mam and I would lie on the couch and cry. Why me I would keep asking; when will this pain go away? Life seemed so cruel. My Mam decided that we couldn’t go on like this. From then on, she would make me go to school during flare ups, if it was the case that I would have to use my wheelchair or crutches I was still made to go in! I hated my Mam for that at the time, but looking back now I was a very quiet child so I would have definitely suffered socially and probably fallen way behind in school work. It also made me hardier and nowadays I tend to push through the bad days and try to continue on with my daily routine as best as I can. Meeting my friends and going to school was also a distraction from the pain.

My friends grew up with my life with JIA so they were always very understanding and a great help to me in school. They would sit inside with me during lunch break if I was too sore to go out and play, they would push me in my wheelchair, take down notes for me if I couldn’t write and little things like that made a huge difference to my wellbeing. They will never understand fully what it’s like to have JIA and my how my illness can fluctuate daily, but as long as they are there for me and willing to help me when I need them, that means the world.

Growing up with JIA did bring its challenges. I missed out on lots of things growing up that were important at the time such as school tours, play dates and birthday parties. I started to realise maybe I am a bit different. I hated being the child that had to sit out of PE class or was not able to go to my best friend’s birthday party or go on a school trip. I hated being the only one in the class that had to use a special chair or crutches.

I loved sports as a child but I was always the last to the ball or the last one over the line, again I was the different one. I was advised to take up swimming, so I did and it was one of the best decisions I made. I took to it like a duck to water (literally!). I wasn’t the different one in the class anymore and I quickly progressed, passing out my peers. I was so happy, I loved the water and it was a sport that was really good for my joints which was a bonus. I started taking part in competitions and I loved going into school on a Monday morning and showing my class my medals. I am so glad I found swimming, it just goes to show that just because you have an invisible illness doesn’t mean that you can’t be just as good as something as someone who doesn’t have an illness.

I remember in 5th class we started school swimming so the 5th and 6th class would go swimming together. We were doing relay races and nobody knew that I was training 3 times a week in the pool as I was in a swimming club. Two 6th class girls were the team captains and I remember one girl saying to them, “don’t pick Niamh, she has arthritis so she will be slow”. Well, I don’t think I’ve ever swam a relay race as fast in all my life! I was going to do anything to prove them wrong.

That was one of the turning points in realising that maybe my peers were also starting to realise that I was different and it wasn’t just myself anymore.

I remember the day that I was told I would have to start injections. I was 8 years old and I remember hearing my consultant say “I think we might have to try the subcutaneous route”. All of these questions were running through my head, I was freaking out! What on earth is subcutaneous, I had awful visions in my head and it was only on the way home in the car that I plucked up the courage to ask my mam what it meant and she said the dreaded word: injections. I hated any sort of change, and this was going to be a big one.

Friday was everyone in my class’s favourite day of the week. It meant no homework and no school until Monday. Not for me, I dreaded Fridays. Friday meant injection day, and a weekend of nausea. My mam would do my injection for me and it could take her 2 hours some days to finally pin me down to receive it. My Granny used to have to come over so that I had somebody to cry into.

Thankfully nowadays I do my injections myself and I don’t need anybody to cling onto! I dreaded going into any hospital and still to this day even the smell of a hospital turns my stomach.

I had to learn to grow up quicker than my peers and start making my own decisions, be it big or small. I was always told when I was younger that I could possibly grow out of JIA, so my family lived in hope. We did everything we could to try and keep my JIA at bay but when I was 12 I remember my consultant telling me that I will probably have this for the rest of my life. When you are 12 that is a shock to the system. All these thoughts were running through my head, how can I deal with this pain for the rest of my life, will I have to take injections forever, will I be able to have children?! I hit a slump and I was very down in myself for a couple of years after that.

I had to learn to adapt the life I wanted to the life that I was given. I had to gain some confidence from somewhere and learn to find my own voice to help my through a life with JIA.

I am now 19 and on a drug that is doing wonders for me. I have started working out in the gym and have completed my first 5km race which 5 years ago I would have never have seen myself doing. I am in University and I am studying to become a primary school teacher, which was my dream.

Don’t let your illness define you, you can still lead the life you want to live just maybe with a few adaptions. I always say that I have JIA, but it doesn’t have me.

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