My Ankylosing Spondylitis Story

Kelsey: I say, "It's an inflammatory autoimmune disease." Because if I open with, "I have ankylosing spondylitis," I get blank stares. Kelsey: I was diagnosed with ankylosing spondylitis when I was 18 or 19 years old, but I was symptomatic starting back when I was 15. Katy: They found it after I had the two hip surgeries, and then they realized the pain wasn't going away. Kelsey: The main symptom I started having was pain in my back and neck and it spread to other joints and I lost some flexibility. Katy: There is typically a pain anywhere from my joint at the bottom of my back to my chest area and right up through my neck. Kelsey: I was frustrated because I had seen so many people who either told me, "Oh, it's in your head. It's growing pains." So by the time I was actually diagnosed, the initial response was actually relief. Later came the, "Oh my gosh, there's actually something wrong with me that we need to treat." Katy: I was scared because at the time, I was in my early 30s and I liked being physically active, I danced. Kelsey: It was very difficult to be so limited physically when I was still so young because some things would drain my energy faster and some things would cause me more pain. Katy: You constantly have to think about how you're moving and what seat you're going to be sat in on the plane. And if the dishwasher's on the ground, I have to bend down and that hurts. It's just learning to live with all that and not let it take over you. Kelsey: Treatment for this illness has come so far in such a short period of time. And eventually, I realized that this is not the end of the world for me. Katy: This is manageable. Keep calm and carry on.