A life-long battle with chronic illness and disability

My story begins when I was just four years old and suffering with severe knee pain

For 15 years I was misdiagnosed or wrongly treated. I was told it was just growing pains and that it would pass. I was told to take paracetamol and ibuprofen when it hurt, and by the age of 15 I was taking these painkillers every four hours, day and night. I hardly ever slept due to the pain, and I was often unable to stay around friends’ houses or go out for long periods of time because I would end up in tears. It felt like both my legs had been broken.

My wonderful mum and dad would often wake up to hear me crying and end up sitting on my bed for hours on end trying to comfort and console me, knowing that the doctors were doing nothing to help me, they would end up taking me to A&E to try and get me help at all hours of the morning and just generally fighting for me in any way they could.

It was only when I went for a small, unrelated, operation aged 19 that a kind nurse told me that as I had juvenile arthritis on my hospital notes, I should have it re-evaluated as I was an adult. My jaw dropped to the floor. Suddenly, the pain, the agonising nights, the missed chances to socialise, it all had a name and a reason. It was such a relief.

So immediately I made an appointment to see my GP and the wheels were finally set in motion for my diagnosis. I saw a rheumatologist and I got my final results – I had the knees of a 90-year-old woman aged 19. And I had rheumatoid arthritis.

I used to sit and cry with my mum in the waiting room for my rheumatology appointments as I looked around at all the older people there. I was the only person under 60 at those appointments. I knew no one else that was suffering that could relate to me being a young person with such a horrible disease. After many different medications and treatments, I was finally given a long-term drug that took the edge off of my pain and meant I could continue to work and go out and socialise like a normal 21-year-old!

However, this wasn’t the end of our story

As my joints became affected, I developed severe anxiety about leaving the house. I was so anxious in case the pain increased to unmanageable levels and I was unable to get home, or if I became upset or fell or something while I was out. I became isolated and depressed and lost all my closest friends. I was also diagnosed with fibromyalgia during this time which added more complications and meant that I was no longer able to work in my teaching job because my good days and bad days were too unpredictable. I was crushed.

Finally, with a push from my wonderful fiancé, my family and a small group of loving friends, I began to be treated for my anxiety and depression and got my life back on track. I’ve always tried my best to hold down a job regardless of these difficulties. At the moment I am waiting to find a treatment for my fibromyalgia to get my life back to normal. I try my best to stay positive and keep focusing on my new jobs – crocheting and crafting!

To find solace in crafting and it is an amazing distraction and outlet for me. Gemstones and wellness jewellery has become a passion and I am finding myself spiritually through this and learning so much about myself and the natural world around me.

Thank you for reading my story and looking at my arts.

I wish you all the health and happiness in the world.


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