These four individuals living with ankylosing spondylitis may sometimes be set back by their condition, but they aren’t letting it control their life.

Ankylosing spondylitis (AS) is more than just occasional back pain. It’s more than just having an uncontrolled spasm, or morning stiffness, or a nerve flare-up. AS is a form of spinal arthritis, and it can take years before an official diagnosis is made.

Managing AS is more than just taking painkillers. It means explaining to loved ones what the condition is, asking for help and support, going through physical therapy, and sticking with prescribed medications.

“Back in the day, I used to pop ibuprofens like they were going out of style, and thankfully I was able to stop that. But at this point, I’ve been from one injectable to the next, and I’m on my third one, and it’s been working great … in addition to meditation, also just going to the gym and staying active. When I’m feeling good, I don’t have a lot of symptoms that remind me that I have ankylosing spondylitis other than some stiffness in my back and neck.”

“In the span of eight years of having this disease, I’ve had times where I was totally debilitated and had to stop my career and didn’t know what my future would look like, if that was going to be what my life was, just being sick. And I’m very happy to say that that is not my life currently thanks to really great treatment. Now I’m a counselor, and I get to help other people with illnesses like mine and with significant suffering in their lives to find meaning and hope and purpose.”

“So, living with AS is a constant, chronic sort of dull ache. I find it mostly in my lower back and my hips. … It’s difficult to stand for too long. It’s difficult to sit for too long. It’s basically when you are stationary in any capacity, things start to sort of seize up. So, long plane rides are not my favorite. But you just figure it out, and it’s just sort of a constant companion, almost, of this dull ache throughout the day.”

“Finding an online community was quite important for me. I never heard of AS before I was diagnosed, not even as a nurse. I never knew the condition existed. I certainly didn’t know anyone else who had it, so finding those other people online was very helpful, because they’ve been there and they’ve done that. They can tell you about the treatments. They can tell you about what to expect. So it was very important to build that trust in other people, to really start to understand your condition better and know what to expect as you go forward.”