Life on the whole was pretty good, I had given up my career to bring up my daughters. I loved picking them up from school everyday, taking them to all their clubs, parties. They had a much better social life than I did. I learnt to cope with the ups and downs of living with JIA and a family and even agreed to getting a puppy..called Whiskey. Who ended up being a complete blessing as she could tell when I was not having a great day, the cuddles were unconditional.
In October 2016 it all changed. I had this continuous pain in eye and even blinking hurt. It kept me awake, my daughters noticed how red it had become and it was getting worse. After a pharmacist telling me it wasn’t conjunctivitis, I saw my GP who told me to go to an eye hospital A&E urgently.
I didn’t even know these existed, let alone know where one was! I ended up in London eye hospital that day and they diagnosed with scleritis (inflammation on the white of the eye). Apparently JIA can attack your organs, and in my case my eye. I had no idea and I was in complete shock.
The hospital told me I had to see a rheumatologist to help get the right treatment, especially as my joints were also not in a good way either. After having my children I had stopped going to see my rheumatologist as I thought what was the point! But this time it was different and apparently there was treatment to help me. For the first time ever I saw a rheumatologist who believed me, could see how inflamed my joints were and put me on long term medication. If I could have, I would have hugged him. It was a struggle to find the right medications to work, and being under two hospitals didn’t help but so far they have saved my eyesight and further damage to my joints.
Parent of a child with JIA
A few years after that diagnosis, my resilience was also put to test as my eldest daughter got diagnosed with JIA. I remember that day so well, my heart broke. I felt so guilty that I had done this to her and I did not want her to go through what I did. I had asked the rheumatologist I saw when I was university if I had a child would they have JIA. He said ‘no’. Looking back in a way I have him to thank, because if he answered it differently would I have my children? No one knows. As hard as it was hearing her diagnosis and I knew that treatment was much different. The multidisciplinary team were great. It did mean a lot of appointments e.g. consultant, nurse, physio, podiatrist, blood tests especially in the first few years, however they did become less frequent and her condition is now being well managed.
It took a few years to get there, it really did feel like history was repeated itself. Both my girls were gymnasts and my eldest did give up the sport she excelled in. However, during the time it took for her treatment to take effect, she started kayaking and a new passion took over.
I will never forget though the day when she came from a school bursting with pride to tell me she did her forward flip (gymnastics terminology) in PE and it didn’t hurt. So thankfully due to the advance in treatment, the support from her rheumatology team, and possibly having a mum knowing what it is like and trying to keep active and positive, her childhood didn’t end up like mine.
We have learnt a lot as a family. JIA has brought us closer together, and my eldest daughter and I only need to look at each other to tell we are not having the best days. We have adapted, learned not to take for granted the good days in life and try to live a healthy and active lifestyle. However, somethings haven’t changed, mainly society’s lack of awareness and understanding of inflammatory arthritis. Read part 4 to find out why I and Katy started Inflammatory Arthritis UK.
