My Diagnosis Journey
If you met me you wouldn’t know right away that I’ve had two hip replacements or that I spent a few years debilitated by chronic pain and unable to walk or stand comfortably. It took many years for me to be diagnosed with ankylosing spondylitis and even more still to reach a point where my life wasn’t ruled by my disease.
It started in my teens
My AS story starts in my teens. I started noticing that my hips were extra stiff and that my lower back hurt probably around age 16. I’m an artist and at the time I had also been taking Taekwondo, a Korean martial art, so my family assumed my pain was just because I was hunching over and wasn’t stretching enough. They took me to the chiropractor and the adjustments always made me feel worse. I was at the point already where I couldn’t reach my feet in most positions and wasn’t able to sit cross-legged. Based on what everyone was telling me I assumed I was just a stiff kid.
Next up: college
College happened next and was enough of a distraction for me to never really notice the pain and immobility creeping up on me. I was always very busy studying and figured what my body was feeling was because of fatigue. I had a job as a dishwasher in the food court which was hard labor. My peers were always vocal about their aches and pains which helped me feel like everything I was going through was normal. One time I wasn’t able to go with my girlfriend, now wife, on a trip because it felt like somebody was trying to rip one of my ribs out. But again I didn’t think I should investigate because I probably just overworked myself and needed to stretch more.
After college it got so much worse
After college is when my AS really kicked in. My wife was accepted into her top graduate school so we moved in together and I got a job as a barista/deli worker to support us. The work environment was very toxic and stressed me out to the point I was having vivid nightmares of customers coming to me in bed and demanding coffee. Stress is a huge contributing factor in my inflammation and my AS peaked. I started to lose a lot of weight. I remember not being able to go from sitting to standing without incredible pain. Any time I would walk my hips would feel like they were slowly drying in cement.
I couldn't walk
There was a night, probably after a particularly long and stressful shift at the deli, where I wasn’t even able to lift my leg because the muscles were so painful and stiff. I had to lean on my wife’s shoulder and physically move my leg with my free hand to make it the few blocks from our car to our tiny apartment. A few of my coworkers told me they were worried about me but nobody pushed the issue or tried to advocate for me. I ignored the pain telling myself it must be what everyone goes through with a tough service job.
I became so depressed
After the stress of supporting us with such an emotionally draining and physical job my body just fell apart. After our move I really wasn’t able to do anything. I couldn’t drive, walk without pain, stand for more than 20 minutes, or sleep. The pain caused constant hypnic jerks that lasted throughout the night. I started to walk with a cane. All of this unexplained pain wore me down and I was depressed and inactive for a year. After I tried to work again as a barista and couldn’t my wife and I got married so I could go on her insurance and try to get a diagnosis.
A rude diagnosis
We saw a primary care doctor who told me I was faking the pain and stiffness during my first physical exam and would only prescribe physical therapy. Physical therapy helped. I still had no idea what was happening with my body. After some X-rays, I got a call from a rude nurse who told me I had ankylosing spondylitis. I wasn’t upset. I was honestly just relieved because I finally had a name for what had been plaguing my body for almost a decade.
I'm still learning
Since that moment I’ve just been learning, with the help of my wife and some incredible specialists how to take care of my body and improve my quality of life. I’ve made some really tough choices since then. I’ve decided to go on biologics, decided with my wife that we were ready to be parents, and followed through with two total hip replacements. I’ve changed my diet to be healthier, started doing yoga regularly, cut stressful things and people out of my life.
I don’t always feel like my AS is under control, but I understand what my body needs better. I know that I was able to stay the positive and kind person I was even through my personal lows. My adversity has made me a stronger, kinder, and a more responsible person. Even though AS is the absolute worst I wouldn’t be the me I am today without it.
Have you ever been made to feel lazy, even though you live with a chronic condition?