“She’s just slow” the GP told my Mum, who was concerned that her one year old daughter could barely stand on her two feet, let alone walk by herself despite excelling in all other areas of her learning. That’s where it all started. After countless appointments with different doctors, numerous A&E visits and being called an over-anxious mother, I was finally diagnosed with Juvenile Idiopathic Arthritis when I was just 18 months old after my Dad’s GP finally listened to my parent’s concerns.
I wish I could say that from diagnosis I embarked on a painless journey to recovery but I’m still suffering at the hands of my condition at 20 years old and probably will for the rest of my life. My JIA doesn’t just affect one specific joint, but all of my joints. I started on Methotrexate tablets when I was around 7/8 years old but by the time I was in my mid-late teens, my body had developed a resistance. So, they put me on Methotrexate injections which reduced my symptoms but made me suffer from horrible side effects, also known as the ‘Methotrexate hangover’. Thankfully now I am on a dosage that is reducing my symptoms without the awful side effects. This is something I want a lot of people to realise: treatment is not a cure and the treatment can be incredibly gruelling. Overall, I am on 3 medications for my condition and receive frequent steroid treatments as an extra boost to my joints but I still do regularly suffer from flare ups.
I am very fortunate to say that my condition hasn’t stopped me from pursuing exactly what I’ve wanted to do, I'm even embarking on a big move to London later in the summer! According to my mum, I have always been like this. Very very stubborn. It is a positive quality in some ways as I feel like it makes me resilient but it also can have consequences. My stubbornness meant that I rarely spoke about how my condition affected me. Not just physically but emotionally and mentally. I was diagnosed with depression and general anxiety disorder in Spring 2019 after years of pain, frustration and worries about my physical health.
But my own personality traits wasn’t the only reason why I wasn’t open about my condition. Over the years, due to the rarity of JIA and my secondary chronic illness Uveitis, an inflammatory condition in the eyes, people have questioned whether I actually suffer from this illness because I don’t look visibly ill. ‘You’re too young!’ ‘Surely that can’t be what you have’ or the classic: ‘Yeah but it’s just aches and pain right?’ These comments really closed me off from talking about my experiences with chronic illness and it even made me question whether my symptoms where just all in my head. Arthritis comes with a whole range of symptoms apart from joint pain. It’s a list that is too long to write down.
It wasn’t until the very end of Sixth Form, when my JIA began spreading all over my body, especially to my wrists, that I began seeking more help. JIA in my wrists meant I could barely write for an hour straight which was really worrying with A-Levels round the corner. So, I went to my exams office expecting them to just turn me away but they were so understanding, not questioning my illness at all. They told me they had a range of options available for me once I brought in a doctor’s note. It was incredibly validating to know that there were people out there who are willing to help or even just listen to me. My move to university in September 2017 only confirmed this for me as my Uni’s disability services team and my department where equally understanding. I began meeting my now current friends and boyfriend who have been nothing but supportive and have only wanted to learn more about the nature of my condition.
This really encouraged me to open up more about my condition and that’s when I came into contact with Versus Arthritis and the entire arthritis/invisible illness community. I have felt nothing but love and encouragement from every single person I’ve come into contact with. Growing up, I felt very isolated as I had no one around me feeling the same way I did but now that couldn’t be further from the truth. I am the happiest I have ever been and so excited for what the future holds.
Never again will I be silenced from speaking out about my condition.