I sat at the other side of the desk to my rheumatologist, something I was used to by this point. But this wasn’t quite the normal visit. My mum sat slightly behind me, questioning the Doctor on what the solution was to all my problems. Nothing could prepare me for what I was about to hear. “This condition is incurable.” My heart sank.
I stopped listening to anything that was being said and I looked at my mum. I felt like I wanted to cry and curl up in a ball and pretend it wasn’t happening, but I didn’t. I sat there, probably looking completely normal. I nodded, booked in my next appointment and we went home.
It was a couple of days later where I found myself sat on the bathroom floor in floods of tears thinking it wasn’t happening to me. 20 years old and diagnosed with something that I couldn’t even pronounce, let alone understand. It took a while to decide what to do next. I couldn’t wrap my head around where my life was heading. So, I decided to do some research. I sat on my laptop googling the night away.
I found out all about ankylosing spondylitis (even how to pronounce it!) and I also discovered NASS. This little charity tucked away in the internet that turned out to be a webpage which would make me realise I wasn’t alone. I learnt how to talk about my pain, I learnt how to understand how my body works and what to do to help it. I also fell in love with how supportive this community is, and how simple it was to contribute.
The word “incurable”, is an awful word. This condition is manageable. There are people out there living rich and fulfilling lives, people you wouldn’t even think suffer any kind of pain, people who are so strong that they radiate positivity. But the word incurable does exist, and unfortunately it brings a lot of people down. It took me a while to really realise that it didn’t define me to have an incurable disease, but what defines me is me. I’m still learning how to manage it, I’m still creating a life for myself, I’m still growing. But nothing will stop me, you or anyone else.
Don’t let one word bring you down. And remember, a little positivity goes a long way.
Danni recently ran a 5k to raise money for NASS, to help others in return for the support she’s received. Raising awareness of AS is very important to her, and she continues to help support others in the NASS and ASone community.