The Upside of Getting a Diagnosis
The night I found out I had AS is permanently imprinted on my mind. I was working late supervising a new team member and saw the doctor’s number come up on my phone. I excused myself to take the call, feeling my stomach drop a little as I did.
I’m not sure why the doctor called me to tell me, it wasn’t standard practice but I think he was excited that he’d finally solved my mystery for me. As soon as I heard his voice I knew what he was about to say. My X-rays had come back in and there it was in black and white; the final piece of the puzzle. I had ankylosing spondylitis.
Those words felt almost like a physical blow
Sure, I was glad to finally get the acknowledgment that my ongoing pain was as serious as it felt, but I had never wanted that to be a disease with no cure.
I soon learned how to say and spell this strange label (typing something repeatedly into search engines will do that for you!) and over time I adjusted to this being my reality.
In time I even began to see there was value in knowing my diagnosis.
For starters, it fast-tracked me to a specialist who could answer my questions and prescribe medication that helped dramatically in those early days. It felt validating to finally have someone believe me rather than brush me off when I spoke about the chronic pain that had been coming and going from my life for more than a decade.
Letting others in my life know the truth
This wasn’t just the case with medical experts, but with the people in my life who had seen me struggle and wondered why. I made a point of letting my family, friends and co-workers know. I think I was trying to justify all those times I’d had to say no to invitations and expectations, always worrying that people I cared about thought I was weak or anti-social. I received a mixed response, I don’t think most people knew what to say and that didn’t really matter. It was just important to me that they knew the truth.
The diagnosis also opened doorways into a community of people who knew the terrain I had now entered. Connecting with other people with AS was a game-changer; I felt seen and understood instead of alone. Many of these people willingly shared their own knowledge and experience, patiently answering my questions and giving sound advice. It was a club none of us would have chosen to join but it was comforting just the same.
Fear and relief
Looking back I can definitely see that having a label put on my pain wasn’t all positive. There were times when the fear of what lay ahead of me became all-consuming. Those google results I pulled up in the early days contained some scary information in relation to progression, complications, and treatment side effects. It has taken time to come to believe that the worst-case scenarios of AS don’t have to be my future and it doesn’t help me to dwell on that possibility.
I’ve also struggled at times to resist using my diagnosis as an excuse or a way to limit myself. At times when my confidence fails me, it can be a fine line to remain objective about what I really am capable of. I always want to remain compassionate with myself but I don’t ever want to use AS as something to hide behind. It takes a fair bit of personal honesty to remind myself of this at times.
I can’t imagine how much harder life would be if I’d never received a diagnosis. It’s enabled me to figure out the best strategy moving forward, it’s helped me create important connections and it’s helped me educate the people around me and ask for their support.
It’s the clear validation that what I am experiencing is real, and that is more important to me than anything.
How much about your AS do you share with others?