'I'm a young woman in an elderly body, but that won't stop me achieving my dreams'

·8-min read
Photo credit: DANA MACLEAN/SARAH COLEMAN
Photo credit: DANA MACLEAN/SARAH COLEMAN

It was summer and I was 12. Learning to tap dance, playing a new instrument, eating too many marshmallows and staying up all night telling ghost stories, I was having the best week at camp with my friends. You might say it was the time of my life.

But, a few days in I noticed I was struggling to keep up with the activities. My knee was really sore. Then my whole leg. I didn't know why. Eventually, I collapsed on the floor in pain and was rushed to hospital. Over the next 12 months this happened four more times until I was diagnosed with Juvenile Idiopathic Arthritis (JIA) at 13 years old.

I’d never heard of JIA before being diagnosed, why would I? At that age, arthritis just isn't on your radar, so I was confused about why I had it. It turns out that my body's immune system attacks its own cells and tissue, which causes swelling, inflammation and pain. This is what makes JIA different to other conditions like rheumatoid arthritis or osteoporosis, which more people are familiar with. I'm 30 now, but I'm still – and always will be – classed as having Juvenile Idiopathic Arthritis.

After my diagnosis, I went through a pretty dark time. I was just a teenager, yet I was trapped in a body that felt much older. As the years went by, I missed out on so many of those simple, childhood joys like going to the park after school to play, which I couldn't do as I had to go home and take painkillers to ease the pain that had developed from being at school all day. I remember feeling really angry with the world and I resented not being able to do things that other kids were doing.

Things only got worse as I got older and eventually I needed crutches just to get around. Luckily all of my friends were supportive and made such an effort to include me in everything – but sadly, my body so often didn't allow it. It meant I missed out on coming-of-age moments like sneaking off from a sleepover to have a few WKDs in the park. I couldn't drink alcohol with the medication I was on, so I got left behind as my peers experienced those rites of passage.

My medication was an issue in itself as well. Methotrexate – which I'd been on since my diagnosis – is a very low (but still very strong) dose of chemotherapy that protected my joints from further damage. Some days the effects of the methotrexate were worse than my arthritis and the overwhelming nausea that came with it was debilitating. By 17 I'd decided I'd had enough and stopped taking it. I was tired of missing out on school and my social life because I spent so much time stuck with my head over the toilet.

I’m not sure if coming off the medication made my hips deteriorate, or if that would have happened anyway, but as the pain in my joints got progressively worse I had to start using a wheelchair. It meant I missed out on yet more of the milestones that make up your life, like learning to drive or going on a girls' trip when you turn 18. Reality for me was quite the opposite, as just before my 18th birthday I learned I'd need to have both of my hips replaced.

I didn't take the news well. After all, who wants to have a double hip replacement at 18? All I could think about was how long it would take to recover, and the idea of being stuck with crutches again played on my mind. But having my hips replaced turned out to be the best thing that could have ever happened to me. With my new hips, I had a new lease of life. I could walk again. Dance again. Go travelling with my pals. Whatever I wanted to do.

It wasn't easy getting to that point though. Having the operation turned out to be the easy part, what came next – months of physiotherapy and rehabilitation – was harder. My right hip was replaced first in June and then my left in September (as you need one to support yourself during recovery because you can’t bear all your weight onto the new hip). As for what that recovery entailed? I pretty much had to learn to walk again. But once I did, I felt liberated.

It's been over ten years since I had my hips replaced, and now I'm gearing up for a similar experience as I need my elbow replaced. I haven't been able to bend my arm for several months, which really gets in the way of my day-to-day life. Every morning I wake up at 6am and start the day with a hot bath with epsom salts to ease some of my pain – I don’t know if this really works, but mentally I feel better afterwards. Usually my boyfriend has to wash my hair for me as I don't have mobility in my arm and I also need help getting dressed, especially putting on my bra. There are bras you can get that do up at the front, but they aren’t very nice to look at. Sometimes I do wear them but I prefer not to, if my boyfriend isn’t there to help me then I just won’t wear a bra.

Photo credit: DANA MACLEAN/SARAH COLEMAN
Photo credit: DANA MACLEAN/SARAH COLEMAN

I prep as much as possible the night before to save time, so I lay out my outfit and the makeup I’ll need. At the moment, due to the deterioration of my elbow, something as simple as putting my coat on takes 15 minutes because I can’t straighten my arm. So I try and cut corners by preparing what I can to make mornings as smooth as possible.

Once I’m dressed I take my three dogs for a walk. This is a great excuse to make sure I always get out of the house, even on the days when I’m not feeling great. After that I drive to the local school where I work part time. I used to work as a makeup artist but the stress on my joints from constantly moving my arms, standing up all day and traveling in the car from client to client was too much so I had to give that up.

It's hard to explain what my arthritis pain feels like, so I always resort back to an image I drew for my doctor when I was diagnosed – fire on my knees and a knife stabbing into my hips. Right now my arthritis feels sharp and hot because my joints are inflamed, so most nights I put ice on my joints to try and bring them back to a normal temperature.

Having arthritis is a bit of a rollercoaster, sometimes the pain is manageable (just a dull ache in the background) and other times it isn’t. At the moment I’m limited as the pain is almost constantly there, but I’m hopeful that after my elbow replacement operation, things will start to level out again and I'll be able to butter my own toast at breakfast.

Until then, I've been doing things to help manage my pain. Yoga is one of my go-tos and I do as much as I can manage, which is about 20-30 minutes. Sometimes I don’t even move about that much, but the breathing element of yoga really helps me to avoid going into a panic, or getting upset when I am having a flare up. Recently I’ve started going to soundbaths as well which I’ve found helpful. I can’t put into words how it helps my pain, but I always have a really good night’s sleep afterwards as it puts me into a deep state of relaxation.

Although the pain that comes with my arthritis is often debilitating, other people don't always understand because they can't see it. If I sit in a priority seat on the bus or train, I often get funny looks or disapproving tuts from strangers. JIA is a hidden illness, and from the outside I look completely healthy with my smiley face, fashionable clothes and makeup – I carry on with my life as best as possible, but it’s hard to ignore the opinions of other people when they’re constantly being pushed onto me.

Photo credit: DANA MACLEAN/SARAH COLEMAN
Photo credit: DANA MACLEAN/SARAH COLEMAN

When I was younger, behaviour like this made me question whether I was deserving enough to park in a disabled space when perhaps an elderly person should use it instead because they look frailer than me. Now as a 30-year-old I have the courage and the confidence not to put up with this anymore.

As I've got older, I've also made peace with my disability – this is my life now. Luckily, I can still do all of the things I want to do and I can still live the life I want to live, I just need to work around my flare ups. Although I haven't let arthritis get in the way of achieving my dreams, sometimes things don't always go to plan. But that just opens the door for new dreams. If I had stayed working as a makeup artist then I never would have realised how much I love working with children. I can't wait to see what doors will open for me next.

Follow Dana on Instagram to learn more about her experience.

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