07/11/2024
Hello, my name is Lauren and I was diagnosed at 18 months old with juvenile idiopathic arthritis. I am currently 23 years old. It was first noticed when I started crawling. I dragged my right foot behind and it turned out I had arthritis in my toe.
At the time, it was very hard to get diagnosed because it wasn’t a spoken about condition where I live or anywhere for that matter. As time went on, my arthritis got progressively worse. I had arthritis in my toes, knees, neck and jaw.
My arthritis affected my immune system and this caused me to get pneumonia and I was hospitalised for 6 weeks. I’ve had chicken pox countless of times and was hospitalised for all of it. When I had arthritis in my jaw and neck, was when I was at my worse. I was unable to move my neck for a year and this caused me to be in a wheelchair.
I spent most of my childhood life in hospital, that it became a second home. I couldn’t understand why it was happening. I remember being about 6/7 and I asked the doctor how long it would last and he replied “how long is a piece of string” my answer to that was “I don’t know” and he said “that’s exactly my answer.”
I struggled growing up, I was always a very active child and never let anyone know about my pain. It was something I knew from a child so pain was something that was a normality for me. My teachers knew about my diagnosis so I was often told to sit out in sport or active lesson just in case “I hurt myself more”. This made me push myself even more. I was done with people telling me what I could or couldn’t do, that I just did it anyway. I’m not saying this is the right thing to do but it definitely shaped me as the person I am today.
When I went into secondary school is when I noticed a change. I was no longer confined to my bed at home that was the same as a hospital bed. I finally started feeling what life was like without pain. The doctors talked about 7 year cycles and that arthritis tends to get better in time and this happened to me. I was one of the lucky ones.
I have been in remission for 10 years now. I no longer take any medication. I’m not going to tell you that it’s all rosey. I do suffer with flare ups and my knees are permanently swollen. I have been having flare ups again for the past 2 years. I’ve tried getting back in contact with my GP to refer me back into the hospital but nobody tells you how hard it is to be re-referred. They don’t tell you how hard it is to transition from being a child and having someone speak to you, to going to appointments on your own and having to describe your whole childhood, from medication to dates of operations. I’ve had doctors question my truth and send me for blood tests with no follow up and I’m tired of arthritis not being taken seriously. Nobody ever seems to read the history of notes! Arthritis is not just a condition in which old people get.
I recently met a girl on holiday and she too has arthritis. I felt privileged that she shared her story with me. It made me realise that I never had anyone to talk to and it’s still going on now!!!
I tried joining groups when I was younger and was told that I didn’t fit or that it was the wrong group for me because it’s one for the parents. I understand that parents need group chats too, they are watching their child suffer and I will forever be grateful for the support my parents have given me… but what about those ones who are living with it?
I wanted to create this safe space for people to talk about their experiences, without judgement and to understand that they’re not alone. I want to create a group where we can all come together to make a stand and to say that something needs to be done. We need to be listened to. Arthritis is an invisible disability on the good day and still little is known about it. I believe it’s time we make some noise and get people recognising and acknowledging the impact it has on people’s lives.
Please don’t be afraid to post on the page to get the talking started :)
