Hi! I’m Kathryn James from Phoenix, AZ. My apple is attached, and my story is below:
I’ve been doing daily status updates about Spondylitis on Facebook to celebrate Ankylosing Spondylitis Awareness Month. I’m in a musical theater production that is in its fourth and final week. After getting home late last night for the umpteenth time in almost two months, I posted the following status update: “Day 14 of Ankylosing Spondylitis Awareness Month. Dude, seriously, this show is kicking my butt worse than Spondylitis has done in YEARS. And it’s a hell of a lot more fun, too!”
A friend of mine, a young woman I had the privilege of being in a production with over a year ago, responded: “In English please? Lol”
When I replied to her, I realized that what I was doing was telling the story of who I am today as a person with Spondylitis
“I have Ankylosing Spondylitis, a chronic, degenerative disease that has no cure. It causes the spine to fuse into a solid column, and can affect other joints, the eyes, and the heart. It also causes pain and fatigue.
Even though I have this disease, I have been fortunate to have good medical coverage, a diagnosis, and medication that works for me. My sacroiliac joints are fused, but thanks to the medication, Enbrel, I haven’t experienced any pain or fatigue in a very long time.
This month is Ankylosing Spondylitis Awareness Month. We Spondys (people with Spondylitis) want the general public to know more about this disease, because it affects a significant portion of the population, but is still under-diagnosed. Many of us are in pain for years before getting diagnosed and by then, the damage is already done. Even doctors don’t seem to know the latest research and information about it.
A lot of people with Spondylitis are dealing with daily pain and fatigue, and I am not. But that doesn’t mean I’m cured, it just means the medication is working. Most days I don’t even remember that I have it. I don’t think of myself as a sick person, even though technically I am.
Even if my story isn’t typical of people with Spondylitis, I’m still part of the community, and it’s important that my voice also be heard. Maybe it will give people hope, or encourage them to keep fighting for better medical treatment, or let people who have just been diagnosed know that there’s a chance that their lives might not necessarily be filled with nothing but pain–that their lives aren’t “over.”
You’re in theater, so you know how hard it is–rehearsals, performances, school, family, friends. We go on sick, tired, and injured and just hope we recover in our days off–assuming we ever get any! And we do it because we love it. We love performing, we love our theater peeps, and we don’t want to live without it! It’s a choice.
Having Spondylitis isn’t a choice.
When I say that the show is kicking my butt, but Spondylitis isn’t–that gives you an idea of how bad Spondylitis can be. I’m taking time every day this month to admit that I have this disease and to be thankful for all the ways it’s NOT affecting me, and all the things that I’m enjoying and that I’m able to do, instead of taking them for granted.
There are no guarantees in life. One day the medication could stop working. One day, the disease could just make a big comeback for no reason. Or maybe I’ll live the rest of my life happily taking my Enbrel and never having any trouble. Who knows. But I’m not going to waste my life worrying about it and being afraid of what might happen.
If I ever do end up fused and in pain and unable to keep performing, at least I’m going to have a ton of great memories and I’ll have spent time with some really awesome people–like you!”