A person walking on a twisted, tangled, knot of a path

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.

Not alone

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.

By providing your email address, you are agreeing to our privacy policy. We never sell or share your email address.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AnkylosingSpondylitis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

or create an account to comment.