Arthritis Ireland Arthritis Ireland

My name is Laura, I was diagnosed with juvenile arthritis (JA) when I was 10. For me the news came as a relief at last I had an answer as to why I was in so much pain. At first I just accepted that I have arthritis but as I got older I wanted to learn as much as possible about JA.

I began to really struggle with having arthritis when I was 16. I found growing up with a disease that wasn't visible to the eye difficult. I had difficulties in school until I explained to each of my teachers how JA impacted me .I explained that I get tired quite easily, I find it difficult to concentrate, I find it difficult to sit for a long time, and I feel worse in the mornings. Once I explained this to my teachers I found things a lot easier.

However I was once told that I was too sick to go to college and perhaps I should undertake something a little less challenging. This has made me more ambitious and determined to succeed. I finished school and I went on to complete a bachelor of business & finance, a masters in finance and I am currently undertaking professional chartered accountancy exams.

I get angry and frustrated sometimes when I can’t do things that others find so easy. When I have a bad flare up I tend to feel frustrated I like to be able to move about. I find that listening to my ipod helps me to drift away for a little while. I’ve always been quite open about having arthritis. For me I find each life stage brings different challenges. While I was in school my peers knew I had arthritis but I found it difficult to tell people as I got a bit older so when I went to college I knew people would ask me “ oh what happened ” when I was wearing splints or if I was using crutches. My first assignment in college was a communications presentation. I presented a case study about a young adult who has arthritis. I got up and spoke about this girl and about how arthritis affected her and then at the end of the presentation I told my class that the girl was me. I found by educating my class they were more understanding. For me this was the easiest way to tell everyone at once and they treated me the exact same as everyone else but with a little understanding when I needed it. If I missed classes because of my arthritis they would email me their notes. After my junior cert I got a scribe, someone who toke down my notes and wrote for me during exams. I used a scribe until I finished college. During exams I had a separate room so that I could move about and take rest breaks. I was also given extra time for exams. As soon as I went to college I registered with the disability officer. She gave me great support from exams to special voice recognition software for my laptop. The disability officer tailored a plan for my requirements and emailed all staff I came into contact with to make them aware of how JA affects me, that I may miss time from college, that I am on medication that affects my concentration, and that I am under the care of a medical team who I need to see on a regular basis. I surrounded myself with good friends when I moved away from home this helped when I was having a bad day. I found an apartment on campus a short walk from college and the shops. I found this was the best option as a management team looked after the student village so if I ever needed anything they were on hand. The weekly shop proved to be quite difficult I found it next to impossible to get the groceries back to the apartment. I started eating junk food and take-aways because I couldn't carry the shopping back to the apartment but pretty soon I was feeling rubbish eating so unhealthily. I came up with a number of ways to combat this I found a supermarket that delivered, I went shopping with friends once a week and we shared a taxi and I did a big shop once a month to get all the heavy items.

Even though I had the food in the apartment I sometimes found cooking difficult I didn't have the energy or my hands where quite sore. I bought frozen vegetables as a back up so I didn't have to cut them, I could throw them straight into a stir fry. I also found making a couple of extra portions of my favourite meals and popping them into the freezer quite useful. My friends & I did cooking nights we dedicated one night where we all helped make a slap up meal or took turns to cook. My first couple of weeks away from home bought many late nights and with a party to attend every night, I soon found the fun catching up on me and I was bought back to reality with a bad flare up which took me a while to recover from. I learned my lesson the hard way and from then on things changed. To prepare for nights out I make sure I have a lot of rest before and after, I make sure its safe to drink alcohol with my medication and that I don’t overdo it, I let my friends know if I'm not feeling great sometimes I still go out but make sure that I have seats reserved in the bar. It’s important to find a happy middle ground by overdoing it I found that I was the one who suffered in the end which meant that I was missing out. It was difficult realising I couldn't do everything but I was able to have more fun by finding a balance. When I was sixteen my parents decided I should take responsibility for my own health. At first I found this very difficult I had to arrange my own blood tests, pick up my medication, ensure I remembered appointments. This was quite daunting but I find the best way to manage is to keep a small diary; I keep of note how I feel, medication I take, when I have my bloods done, when my appointments are etc... It all helps for when I see my consultant and allows me to keep track of my own health. It also helped the doctors see how I responded to various treatments. The lack of understanding around JA is something I’ve really struggled with. People have a lot of misconceptions about arthritis. I was diagnosed when I was 10 many people thought I was “ faking it” as I got older other people struggled to understand that I can have good days and bad days or that my pain is severe at times and can vary throughout the day.

It took me a while but I’ve come to the realization that you can’t change everyone’s mind. In my experience quite often negative opinion stem from lack of knowledge. I can do something about that by creating awareness of JA and other forms of arthritis that affect young people. I attended one of the 'Living Well with Arthritis' courses which are run by Arthritis Ireland, where I discovered that I have the ability to take control of my arthritis and there is a lot I can do help myself.

The one thing I regret is not meeting others with arthritis at a younger age. It wasn't until recently I met other young people with arthritis. Before I never felt like I needed to meet others with arthritis but within the last year I made a number of good friends with people my age who have arthritis. I can’t express how much of a benefit this has been to me. It’s great being around people who know exactly how I'm feeling and we share an understanding that even your closest friends may never truly understand. When it comes to starting a relationship when you have arthritis, it can be somewhat daunting. Initially it caused me a great deal of stress. I thought my boyfriend would run a mile once he found out I had arthritis or when I had a flare up. I didn’t want him to see me differently nor did I want him to think I was made of glass. He was very understanding and supportive though. I have to strike a balance and take it easy and look after my health which I had more of an issue with than he did. Sometimes I found it frustrating not to be able to fully keep up with him but as time went on our routine just came naturally. Pretty shortly after we met the realisation that I have an auto immune disease hit home as a meningitis outbreak hit my college. I had to take medication and extra precautions like having to avoid large groups of people. At first I was ashamed to ask for help when it was needed I would try to do everything myself. I didn’t want to be mollycoddled. I put myself through intense pain trying to do my hair to look nice.

I would try to hide how I was feeling but I wasn’t fooling anyone but myself. One day we went for a walk I was doing ok for the first few minutes then I couldn’t move I was in so much pain . He picked me up and bought me home where he got all of my favorite things together so I didn't have to move and cooked my favorite dinner. He made a bed for me in the sitting room so I didn’t feel I was missing out. Just by having him there making me laugh I was distracted from the pain I was in.

He understands I cant’ do everything but we always find ways around things I find going to the cinema tough, sitting down for hours makes me stiff so we will go to an earlier show as I get quite sore late at night. Sometimes I don’t feel up to going out so we do something at home instead like getting a take away and watching dvd’s.

If I had one piece of advice to give it would be not to waste time thinking about how arthritis will affect your relationship. He/she is clearly interested in you because of who you are. Yes, your arthritis impacts your life but there are ways around everything.

I thought my boyfriend would run a mile as soon as he knew I had arthritis but six years later we are still together we haven't looked back and to be honest our relationship is just as great as anyone else's.