Telling The World

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‘What do you mean, How did I catch it? It’s not the common cold or an STD!’ I questioned my cousin. My sister and I, and our two cousins had met up in the village to go for a bag of chips and a catch up. I told them about my arthritis. Now that I knew what was wrong at least I could explain to people. It was easier than trying to explain that I felt sore a lot and for no apparent reason. Of course *Shane would ask something ridiculous. Although at least his reaction made me laugh, I mean I had to laugh at the fact that he thought this was something I could give him. That if he accidently touched me, or if I coughed close to him he might ‘catch’ it. It reminded me of when we were young children playing in the back yard and *Shane thought we would give him cooties because we were girls!

My parents had told my Nana, whose reaction was just as I had imagined.’ Oh the poor creator, oh god isn’t that awful. Well at least she wouldn’t be able to wear those shoes anymore. Those high heels are dangerous things!’ My aunts and uncles were very inquisitive about how I was feeling and if my medicine would help much, but in general they just expected me to get on with it. I liked that though if I’m honest. More than anything I wanted things to go back to normal and while they would never be exactly the same as they were at the very least they could be similar.

My younger sister was amazing! She gave me a huge hug when I told her and asked loads of questions so she would know how to help if I was having a bad day. There is only two years between us and we have always been close. At that time of my life I really needed her and she really came through. She had just the right amount of sympathy for me to make me feel like I wasn’t an idiot for feeling like my world had been turned upside down whilst having just the right amount of nonchalance to make me see that it wasn’t the end of my world… just a big change.

Telling my family wasn’t really what scared me. I knew they’d be supportive if I ever needed help. I knew that they’d understand if I needed to sit out on a family occasion or needed to walk a bit slower than everyone else. It was the dreaded fear that every 15 year old is possessed by at one point or another. What would my friends think, my class mates, the boy I liked at school? Would they think I was boring when I couldn’t jump that fence, or lazy when I’d come last in the fun run? (Which I walked)

My mam rang the school to talk my year head. She explained that packing my heavy books into my school bag and walking fast to my next class was sometimes going to prove quite difficult for me. That sometimes even writing would be hard as my fingers and wrists were very badly affected. I was in Transition Year at the time and my year head also happened to be my English teacher. I thought he was wonderful, I really respected him and still do and I loved my classes with him. Yet there was one day I had a fleeting moment of anger towards him that looking back was quite immature of me. He told everyone in the class all that my mam had said. That I had arthritis, that some of our more physical trips out would prove difficult if not impossible for me and that to make sure I didn’t need any help carrying my bag to my next class. He was just trying to help and make me feel as though my class mates would understand. I didn’t feel as though they would however. I felt like I was the ‘special’ kid who needed help. I thought they were all laughing, thinking, “this weirdo has a granny disease!” In hindsight, I don’t think any of them thought that. In fact most of them if I’m honest, didn’t care. I really shouldn’t have been so insecure, but at that age everything is, ‘a big deal’.

As I got older telling people wasn’t an issue. I didn’t exactly go shouting it from the roof tops or introducing myself as ‘Gloria, the girl with arthritis’ but I wasn’t so insecure about telling people. Most people are surprised and don’t realise that you can even be diagnosed with arthritis during childhood. I find friends are often very accommodating and don’t seem to mind opening bottles or even carrying a heavy shopping bag or two.

One encounter with a friend made me wonder though. *James was on my course for a year where we became quite friendly, about six months after the course was finished he began dating my sister *Kirsty. One night as we were all out in Limerick city, I happened to be quite sore, I couldn’t move my right arm without a lot of pain. I soldiered on and my sister was great. She carried my handbag, ordered any drinks I was having and carried them to my table. She also ordered my food and took it out of the bag, salted my chips and opened my curry sauce in Supermacs later that night. I was very grateful to her, I’d managed to have a good night out because of her and my friends help. However as we were leaving *Kirsty held out my jacket to help me put it on. I heard *James say something quietly to her. He asked her ‘Could she do anything herself?’ At first I was kind of taken back, nobody that night had complained about me needing help. I suddenly felt like a great burden. * Kirsty quickly answered him back telling him to get off my case, that I was sore and that arthritis can be very painful. He looked at her and me laughing… He honestly hadn’t known all this time that I had a condition of any sort other than a big mouth!

That got me thinking, my friends often carried most, if not all of the recording equipment when we went out filming, they helped carrying my shopping bags to the train station for me after college, they poured my tea from the pot at lunch and *James had seen all this and what? He hadn’t realised there was a reason they were doing this. ‘Oh god!’, I kept thinking, he just thought I was a lazy cow. He couldn’t have thought anything else, but that I was sickeningly lazy and made my friends do everything that required any sort of effort.

I have to say I was worried who else saw me as lazy and sometimes I still do. I often think is it better to be thought of as the girl who is being lazy or the one with the excuses?

I haven’t really decided yet……………….

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The Diagnosis

ee84aaee5f96b929e49545b8ce1b666a‘It’s not something that can be cured but we will help you manage your condition…..’ started the nurse. As she spoke I nodded quietly, mam was sitting beside me soaking all the information in while I just heard, “can’t be cured”. I felt that maybe it was a little ridiculous to be so shocked, I mean, I wasn’t dying. I had just been diagnosed with rheumatoid arthritis.

It wasn’t cancer, I wasn’t going blind, and nothing horrific was happening. I didn’t need to have a 17 hour surgery or anything insane like that… but still, I felt like I had been punched in the stomach. Those words, “never be cured” kept creeping into my head. The nurse was absolutely lovely and talked me through why I felt stiff and sore, why I was tired all the time and the medication I would be put on.

I kept hearing the words, “manage” and, “control”. At fifteen this didn’t mean much to me. I thought the usual ritual would have occurred, doctors, tests, medicine, a few weeks rest. I thought I’d be feeling fine and back out to the disco before I knew it. However this time was different.  I had been to the doctors for about a year, gone through various blood tests, x-rays, scans and examinations by several doctors and nurses and only now was I getting an answer. Six months previous to my diagnosis I was at the point of being so frustrated at not knowing why I was in pain, that I really thought I would have been quite happy with just an answer. An answer as to why I found it painful to do things a year ago I completely took for granted.

Yet, once given my diagnosis I was only momentarily relieved. I put on a brave face. I was always good at that at the doctors. “Oh yeah, no problem doctor, I’m not bothered by that needle even if it is the length of my arm!’ I nodded politely and listened to all the nurse had to say. My mam was really great. She reminded me it could have been much worse and that now I had medicine I would feel more like myself very soon. She also gave me a cuddle which made me not feel so foolish for feeling a bit sorry for myself.

I was told I had arthritis in most of my joints, this included my knees, wrists and fingers.  I soon began to realise that even with medicine I would have good days and bad. Some days I would wake up and feel relatively fine, I mean, I don’t think I’ll ever climb Mount Everest but maybe, just maybe on a good day a large hill would be my bitch! I’ll never be able to do a handstand again but I don’t really require that skill for any of my life goals so I’m doing ok. Still, there are some days when something as simple as brushing my teeth can prove difficult and painful. It’s the little things you take for granted when you have your health that suddenly become your biggest obstacles. From squeezing the toothpaste out, to turning a stubborn tap on or holding a toothbrush.  On a bad day, they can all seem like climbing Mount Everest to me.

At 15, I felt embarrassed to tell my friends that I had arthritis. It was known as, “something old people got”. You’d expect your granny to have it, not your school friend. My cousin even thought it was contagious, but he was just being a complete idiot! I made jokes about my old lady bones, and I still do. It helps to make light of it, it’s not the most horrendous thing in the world! Why not laugh? It makes people more comfortable too, I find. However I must admit, I didn’t feel like laughing much the day I was told. I know I had arthritis a while before they actually told me in that nurses office, but still that day changed my life. I wasn’t just Gloria anymore I was the, “poor creator” with arthritis, “your one with the fat fingers”, and “the girl with the old lady bones”.

The hardest thing at times is people not understanding me, or my condition. If one person reads this and feels like someone else understands even a bit of what they are going through then I have been successful in what I am trying to achieve.