It is strange what having inflammatory arthritis does to you. The fluctuating nature of the disease is very much reflected in my life. There are times when I hate it, cry, and want to scream into a pillow. I have learnt it is OK to feel like this, it is normal, but it is how I carry on afterwards that counts. I strongly believe it has made me more resilient, confident and mentally stronger. If it wasn’t for inflammatory arthritis, I would not have found new passions and be the person I am today. The good days now far out-weigh the bad days, and whatever the future holds I am in a better place to cope with it.
It was following my daughter’s diagnosis that I decided to get more heavily involved in the rheumatology world. I have seen the great advancement in treatment for children and adults with IA, however, there are things that have not changed since my diagnosis, the main one is society. The comments my daughter got were the same as what I had ‘but you don’t look ill’, ‘my grandma has that’, ‘have you tried gold bangles’, ‘become a vegan it cures it’, or ‘turmeric cures it’. Newsflash..children and young people can have inflammatory arthritis. It is not osteoarthritis, which is associated to older people. JIA and all types of inflammatory arthritis are auto-immune diseases, it is our immune system attacking our healthy tissues. There is no cure, it is far more than ‘arthritis’, and this is something we must live with 24/7.
I know first-hand how hard it can be living with a lifelong condition that society does not understand, and my new passion is trying to raise awareness, understanding and research into the causes, treatments and management of IA. I am now a respected patient/parent representative and advocate, and I will always champion the needs for children and young people. But there is still a lot of work to do.
Meeting Katy has been eye opening, a friendship based on commonalities of life with IA. We both have a similar positive mindset and the passion to raise awareness and understanding of the impact living with IA has on our lives. We want anyone of any age living with IA to be able to freely pursue their dreams and live life to the full. This is where our new chapter begins and we will work hard to make sure anyone impacted by IA, including family, friends, carers, teachers, employers have the support, guidance and resources to understand the impact and to help anyone living with IA be able to live their best life. Our new weekly podcast Inflammatory! will help with that. It covers how we live our lives, is there to inspire and empower all those impacted by IA and to help you live the life you deserve. Read Katy’s journey.
