By Jed Finley, as told to Janie McQueen
I was diagnosed with ankylosing spondylitis (AS) in 1994 when I was 12 years old. Diagnosing younger people is becoming more common as doctors learn about AS. But there weren’t many options available at the time, so I left it untreated for a long time.
I played ice hockey and other sports as a kid, so I used to feel pain from the exercises. But in my early twenties, I realized that something was really wrong. My knees, hips and ankles were screaming and cracking with every step. I’m starting to hunch up, and people are already starting to notice. As a college freshman, my roommates called me “the old man.” It was obvious that I was more squeaky than I should have been at twenty.
I wasn’t able to do as much as I used to because of my joint and back pain. I was a distance runner, and one day in the middle of a 10-mile race, I pulled Forrest Gump with full force. I stopped and said, “You know what, I’m done.” I just got home, and that was the end of it.
I checked in with my rheumatologist who knew what I had. I was lucky. It can be really hard to get a diagnosis for many people. Unless you have spinal fusion on an X-ray, there isn’t much physical evidence. Even in my case, I’m not 100% integrated anywhere, although I’m really close in a few places.
At first it was like, “Mind over matter.” You’re doing a good job, but then…you’re not. Mentally, it’s hard to live this way. I guess I used to be very active – that can get you frustrated. I’m not that old, I’m 39. The pain is getting worse. Sometimes I feel like it all comes from here. For example, I am a special education teacher. I was working at an autism center, and he was very active. I’ve always had to have the rule, “No to lift.” I don’t get down on the floor, because I couldn’t get up. I had to change my business plan and do more resource work. Those kinds of changes were tough. So the mental aspect is the most draining part of AS – just a borderline perception.
Looking for the bright side
In 2007, she created a support group on Facebook for people living with AS. I just wanted to connect with other people. I haven’t met anyone else with him. Today, it has 29,500 members. I also run a support group in St. Louis for the American Spondylitis Society and do advocacy through many other organizations, such as CreakyJoints. I have found a lot of health and therapy through leading support groups. I would say my AS gave me pride and purpose. She has given me this area of expertise that allows me to do so much in the community.
Explore alternative treatments
I’ve been doing physical therapy for about a year, and it’s been fine. You’ve strengthened your core and things that take pressure off your spine, make you more flexible, etc., and that worked well. I see a chiropractor almost regularly, and it’s a real contentious issue in the AS community. But I decided to go for a free consultation accompanying the x-rays. The chiropractor showed me that I had back problems, not just AS. I started getting to know these little bits. For example, my thigh was always tilted. I was never able to lean or turn in a certain way. So I got my hips balanced with chiropractic, and it was a huge help. I’m even trying to get back to walking again.
Keep flares at bay
AS is a lifelong condition, but it also gets worse. Weather with air pressure changes. Dairy products and sugar. All are motivators. I avoid 100% dairy products. I try to avoid extreme stress. I take an amino acid drink mix that helps with blood circulation. It cuts the inflammation and eliminates the brain fog that comes with AS. To help me relax, I love to draw, and I really enjoy writing. I write for a couple of blogging sites, and that’s my therapy. I always like to say that although not many people have heard of AS, it is not really rare. In fact, a 2012 study by the Centers for Disease Control and Prevention found that 2.7 million Americans have axial spondyloarthritis, the overarching classification that falls under the AS classification. The more word spreads and doctors know what to look for, the more people can be diagnosed and treated.