What can I tell you about myself? My name is Siobhan O’Shaughnessy. I’m a teenager, make up, music, concerts and a boyfriend and oh yes, I have juvenile arthritis. I’m 17 years old but by the time you will have read my essay I will have celebrated my 18th Birthday. What a milestone! To many people I’m probably still “a little girl” but to a young lady coming of age, it’s like opening up a whole new world…
Looking back over my teenage years, it has been a challenge. At the tender age of fifteen I was diagnosed with juvenile arthritis. To get to that diagnosis took a long time and after many bouts of sickness, flares, painful joints intertwined with my parents and brothers almost going insane with worry, it was almost a relief to hear the consultant saying “You have systemic juvenile arthritis”.
After my mother trawled the internet to get every bit of information she could put her hands on to understand my diagnosis, bombarded my consultant with questions and taking photographs of flares and swollen joints, it wasn’t long before we knew what we were dealing with!
I had just moved into the adult rheumatologist department from paediatrics and to this day I think the best thing that happened to me was meeting my rheumatologist consultant at Cork University Hospital. He took charge of my illness in a vigorous and adamant manner. A young man, friendly, talkative and most of all I had found someone who was interested in listening to me. He always welcomed my parents as well as me to every appointment and no matter what decision his team made, he was always the one to make the final call on my care. I trust him to make wise, smart and informed decisions based on my needs and what is best for me.
During a social networking event on Twitter my mum learnt very quickly that there was a very active organisation in Ireland who dedicated themselves to people with RMDs. After initial contact and a lot of support given to our family by Arthritis Ireland, I look back now over the past two years and think “where would I be without them”. That was the beginning of my journey with living openly and accepting life with juvenile arthritis. They have supported and encouraged me beyond their duty. From a quiet, shy introvert teenager to a happy, go lucky, young lady, I have recently been an advocate for juvenile arthritis and encouraging other teenagers and young people to come forward and talk about their challenges of growing up and living with arthritis.
I did this by writing an article to raise awareness of arthritis in young people in our local newspaper. I also went on national radio, 2FM and spoke to the nation about my story so far and how I deal with living with arthritis on a daily basis. The day I spoke on the radio, it was from my hospital bed. I had been admitted with a bad flare up on that particular occasion. But being in hospital was not going to keep me down. This was the perfect time to tell people what it was like to miss school, have friends forget about you when “you’re out of sight, you’re out of mind” and more importantly I told anybody that would listen to encourage others with arthritis to get active and involved in their local arthritis branch in the community. I told the radio audience that my family had been asked to be ambassadors in the summer of 2012 so anybody at all who knew me had “waved for Word Arthritis Day”.
I got the opportunity to do a photoshoot on our local beach and a photographer from the local newspaper took many shots of me walking along the beach on a bright sunny morning in beautiful surroundings. This photograph would accompany the headline “Siobhan is just 17, recently abseiled down a Cliff but Suffers from juvenile arthritis” That headline was the first time my story was being told to the public and it felt so liberating! Even family members were very taken with my story and opened up a lot of conversation around support and illness in young people. The school principal made an announcement of congratulations on my article and proudly displayed it in the school for everyone to read. At last…my friends and teachers could read it for themselves, I didn’t have to explain why I was able be in school one day and maybe missing the next!
So that was the beginning of me wanting to raise awareness and support other young people with arthritis. I believe I have a lot to offer. I like to encourage all the young people I have met through Arthritis Ireland to be a support network for each other, to lean on each other and talk through any concerns we may have together and learn from each other’s experiences. We all attended a Youth Workshop that was organised by a young woman in Arthritis Ireland who took a group of young people under her wing and made sure we got the best of support throughout the year and especially on this weekend away. I went on that trip on a Friday with a lot of anxiety and what if’s as I did not know too many people going but by the time I had left on Sunday evening, I had participated in youth workshops, learnt coping mechanisms for dealing with pain and last but not least had abseiled down a cliff…me, yes, me! Abseiled down a cliff. When I went there, I had an aversion to the “Great Outdoors” and was coming home with a certificate for abseiling…my arthritis was not going to hold me back!! The people I met on that weekend are now some of my closest friends and I couldn’t imagine them not being in my life.
So in October my abseiling picture appeared in the Arthritis Ireland Magazine and my consultant arrives at my bedside with a copy in his hand, congratulating me on my achievements and on my article in the local newspaper raising awareness. This gave him and me more determination to get my arthritis under control and to accept it gracefully and I promised to keep challenging myself through different activities, promoting awareness of arthritis in young people and getting people to realise that arthritis is not just an “old persons” disease.
There you go! From a very low activity, Facebook, Twitter, Social Networking junkie sitting on the couch converted to challenging myself by trying out new activities. Abseiling is not a practical every day activity but I do realise that swimming a few lengths a couple of times a week or just walking to the shop for that bar of chocolate instead of getting a lift in the car has more benefits than a little sugar rush! That’s my excuse and I’m sticking to it!! I have adjusted my mind to try not to limit myself and accept challenges that come my way. I believe that a healthy mind will help me have a healthier body. I will always push myself but within my own limitations. I know when I should stop or when I can give that extra little bit of effort. It might be a day that I can just about make it into school for a couple of hours but at least at the end of the day I can look back and say “yes” I have achieved something today! What is so ordinary to other young people who do not suffer from an RMD, is a daily challenge and achieving something small can be a big reward for RMD sufferers!
So that’s me in a nutshell….from back then at age 15 not being able to get out of bed to now being on biologic injections and accepting and respecting my illness medically, I believe that my wellness is much wider than taking medication. Whilst it is a crucial and important part of my care I believe that opening my mind, my heart and trusting and respecting people, is the key to helping others to understand me, accept me for who I am, encouraging other young people to put their hands up and say “yes, I have arthritis too and I am a young person”. I will grow up with a positive attitude. I will accept the things I cannot change and do everything in my ability to change the things I can make a difference to myself and for others. Whilst all the people I have met, both young and old through my experience over the past few years are sufferers of RMD, I realise that although we all have very common threads, our experiences of growing up or living with an RMD are unique to ourselves.
So, back to my 18th birthday, it’s going to be a mega celebration with family, friends and fun being the order of the night! I plan to dance the night away…in high heels by the way! I will probably pay for it for a week but nothing is getting in the way of me having the time of my life! Bring on the Party!
Siobhan’s story was selected to be part of a publication in the recent EULAR Stene Prize competition. Thank you to everyone who has helped us to support hundreds of children like Siobhan, who are living with arthritis, by selling Jasper pins. If you would like to sell the little pin that makes a BIG difference, please click here to find out more.