Abbey was diagnosed with Juvenile Idiopathic Arthritis when she was just 22 months old. She has lived with chronic, daily pain for the last 12 years, which can range in intensity each day. Some days the pain is so severe that just getting out of bed and trying to walk can be unbearable. Abbey’s pain is primarily in the joints of her ankles, toes, knees, hips, fingers and wrists. Some days she also experiences pain in her jaw.
The activities Abbey is able to participate in can vary day-to-day; some days she can be quite active, playing sport or walking long distances, however other days she can’t do anything.
Abbey takes a lot of different medications to try and control her pain. She also regularly sees a physiotherapist who specialises in JIA, and does hydrotherapy, which she has found to be effective in helping to control her pain. Abbey has learnt over the years that sitting for long periods, for example when watching TV or reading a book, her joints stiffen and she struggles to walk without limping, so she makes sure she doesn’t stay in one position for too long.
Abbey wishes other people understood that her pain is always there, even when she’s taken medication to try and alleviate it. The other drawback is that many of the medications she needs to take come with their own side effects, like constant nausea, which can make the whole experience that much harder.
“At school I often feel like I can’t keep up with my friends, I can’t do all the things they can do. I used to love playing sport, but now I have to miss out when my pain is really bad. My pain can be exacerbated by standing, by walking, by sitting for too long – I’m forever trying to reposition myself to get comfortable.”
“I do feel really supported by my friends and family, and my school has been really great too, giving me care plans to make getting through my school work easier. If I need to write a long essay they’ll let me type it, and I’m allowed to get up and walk around in long exams, which helps me get through it.”
“I hope in the future someone can find a cure for arthritis, or something to help people living in chronic pain. In the meantime I want to help other people in my situation by sharing my story of what it’s like to live with chronic pain.”
Abbey's mum says:
“Trying to find the right balance to manage Abbey’s JIA has been really hard. We’ve found that it’s essential for her to keep active, to keep her joints moving and her muscles strong, but then if she overdoes it her joints can flare up and she’ll experience intense pain that means she can’t do anything for a few days. And then she gets stiff and sore again from not moving. We’re still searching for the right balance.”
“As parents of a child with a chronic condition, we’ve had to make the decision to case-manage her situation, and determine what works best for her and for us as a family. And it’s not just managing the physical pain, the impact on mental health can be significant, so we need to be really careful about managing that too. It’s exhausting and I never know if I’m doing it quite right, but Abbey is awesome, so I think we must be doing something right!”