My Diagnosis Journey
Like so many of us, receiving a diagnosis took some time for me as well. When I was about eleven or twelve years old I started getting pain in my hip area. At first, I got some relief by giving pressure to that area but in time that wasn’t enough. So my general practitioner gave me some painkillers and the advice to see a physiotherapist. Which of course didn’t help me at all. So, my GP asked if I could visit at a time when the pain spiked so he could examine me then.
More and more pain
The pain that I had from the inflammation became worse. I can still remember that day that my pain spiked. I could hardly get into the car to go and see my GP. When we finally got to him he was quick to send me to the hospital and there a long period of hospital visits started. X-rays, CT scans, MRIs, you name it, I had to go through it all. A period of multiple years of pain and the only thing that I had to help me were painkillers that didn’t work for me.
Even though my loved ones might never fully understand the pain that I had to endure I know that I wasn’t alone. A parent never wants to see their child in such pain and not be able to help. For me and my family, it was a very difficult period before I received my diagnosis. We all wanted to know what was in front of us. What did I have? And could it be cured if the doctors found out what was causing the pain? A long time with a lot of questions and no answers.
Three years on
It wasn’t until I was fifteen when I received the diagnosis of AS. By then there was some damage on my spine and hip bone to be seen on the x-rays and they found inflammation in my blood work. At that age, I couldn’t fully grasp the idea that I might never get better from this disease. Realizing that took me some years as well.
I felt I was fighting a losing game
By the time it became clear that I have AS, biologics weren’t invented yet. For a long time, all I had to battle the pain was painkillers and physiotherapy. I had nothing that really helped me. All that I could do was fight and prolong the deterioration of my body. When all that I wanted to do was learn and work for my future and to have fun with friends. Not to cancel any plans because I had to go to the therapist or because I was in too much pain.
Finally some relief
It wasn’t until I was twenty-five that I received biologics. That was a huge step for me. Hardly experiencing any inflammation pain was such a huge win for me. That same period I received my hip replacements. I finally had gotten some of my life back. It made me realize how much pain I had to endure all those years on a daily basis.
Do you use the word disability to describe your AS?