My Diagnosis Day
I was diagnosed with ankylosing spondylitis on February 28, 2018. At that point, I’d had AS for a full year without knowing it.
Full disclosure, I have no photos or journals from that day, so I don’t fully remember it, but I’m going to recount what I can remember. Turns out one of the biggest days of my life was also one of my foggiest.
What I remember
I remember I had an early appointment at my rheumatologist’s office. I was annoyed because I assumed it was going to be another appointment where I would be told nothing was wrong with me. A common occurrence for those of us with chronic illnesses. “I’m getting up early and bussing to this appointment for what?” I thought to myself.
When I was called in and triaged by the nurse, I started to get anxious. When I’m anxious I pick at my nails. My nails were not in good shape that morning. I had to wait a long time for my rheumatologist to come into my room, during which I would occasionally look at my phone, stare at the window, and worry. It was so early that none of my friends were awake yet, so I couldn’t text them with the “I’M SCARED” anxiety texts that I usually do.
When my rheumatologist came in
My rheumatologist came into the room at full speed. He started talking to me just as fast. It was hard for me to keep up, especially being half awake and half fully-there.
He said what I wasn’t expecting to hear that morning. That my MRI came back with something. It came back with inflammation in my SI joints. “What the heck is an SI joint?” I remember thinking to myself.
He started to explain what all of this meant and that my bloodwork came back with HLA-B27 positive markers. He also showed me on my body by applying pressure where the inflammation actually was.
My rheumatologist then left the room and came back with a pamphlet with an unusually happy man on the cover. The pamphlet said “Ankylosing Spondylitis”. He explained that he wanted me to start on Biologics, asked me if I agreed with his decision, and I said yes. Then I was on my way.
How I felt afterward
After the appointment is when the day gets the foggiest. I was having mixed emotions. Happy because I got answers, confused, and upset because I was going to have this for the rest of my life. At 22, that’s not something you think you’re going to hear going into a doctor’s appointment.
I remember going home and not wanting to be on my own. Sure, I had my parents that I lived with, but I didn’t want to be on my own in my room that night. I took my pamphlet and slept over at my friend’s house.
I would keep reading it and trying to understand what this really meant for me moving forward. The day was incredible anxiety-inducing, and the road hasn't been easy, but I have much more hope now that I know so much more about the disease.
Your diagnosis day
What was your diagnosis day like? What do you remember from it?
Do you use the word disability to describe your AS?