The Value of a Getting a Diagnosis

Getting told I had axial spondyloarthritis filled me with two big emotions: fear and relief.

I didn’t want to be told I had an incurable, progressive disease. If I’m honest, it was one of the scariest moments of my life. On the other hand, I had been in pain for so long and someone was finally making sense of it for me. It was time to get answers and hand over some of the mental load I’d been carrying.

Best of all, it was an opportunity to at last get some relief from the pain.

Looking back I can see so many other benefits of getting a diagnosis, many of which only became clear to me over time.

It was so reassuring to discover this was real, not all in my head

Discovering I had axial spondyloarthritis solved the mystery of the pain that had been interrupting my life for years. I’d tried so hard to tell myself “it isn’t that bad’ but deep down I knew it was. This was my proof - I wasn’t just a negative or weak person making excuses, there was actually something very wrong with my body.

Importantly, the diagnosis gave me a starting point to get some pain relief and make a plan to move forward. The problem solver in me embraced the idea as if it was a project I could begin. This approach drove me to keep looking for ways to improve my health and reduce my symptoms. Over time many of those strategies have worked to reduce my disease activity to a very low level.

Having a name for this

Having a label helped my family and friends make sense of what was happening to me. While people around us can easily understand a broken leg, they often struggle to legitimize invisible conditions. Suddenly I received a different level of concern and support, as if the doctor’s discovery allowed people to finally believe something serious was wrong, I wasn’t just making it up. That was hurtful in some ways, but at least I felt more able to ask for help or time-out when I needed it.

One of the most important aspects of having a diagnosis was that it gave me an instant foundation to connect with other people with AS. It was like I had gained membership to a new club where we all had this one big thing in common in our lives. It was and continues to be the most positive outcome in my story, as I’ve made great friends all around the world who have AS.

Wondering

I often wonder how different the last ten years would have been if I’d never been diagnosed. It’s hard to even imagine. This is why I find the delay in diagnosis for people with AS deeply concerning, because it translates to people living in pain and isolation for far too long.

To anyone still trying to get a confirmed diagnosis I encourage you to keep going. You deserve to get answers, as confronting as they might be. And like me, you may find being able to put a name to your pain brings its own positive outcomes.