Writing Her Own Rules With Ankylosing Spondylitis
Hillary Wool wasn't ready to let a chronic condition keep her from her active lifestyle. Discover her secrets.
When Hillary Wool was diagnosed with ankylosing spondylitis (AS) in 2019, she made a decision to always stay active—no matter what. The 33-year-old management consultant and disability-chronic illness advocate from New York City has not only stayed true to her word, she has done more than she could ever have imagined—wheelchair racing, endurance races, and now, training for her first triathlon this summer—despite the pain that might ensue afterwards.
“I’m really passionate about following an intense fitness routine,” she says. “What grounds me and keeps me going is having some control over an uncontrollable body. I try to always honor the commitment I made to staying strong.”
Wool didn’t grow up playing sports. In fact, she says she struggled to run a mile in PE. As a teen she was diagnosed with scoliosis, and it was only when she hit her 20s that she slowly began pushing her physical boundaries. Then, in the summer of 2018, she had a virus that, once the symptoms subsided, left her with widespread inflammatory pain.
“At the time, I was overwhelmed with pain and fatigue and felt totally foreign in my own body,” she says. “I knew something was wrong besides recovering from the virus.”
The promise she made herself after her diagnosis means that exercise is a non-negotiable for Wool. You’ll find her taking high-intensity spin classes and she’s passionate about Pilates. There’s only one thing that stops Wool from enjoying any workout: high impact.
“Even though I have issues with mobility and walking down the street, I can ride a bike or go downhill skiing forever,” she says. “My skiing has improved since my AS diagnosis!”
Not every day is easy, but any day that involves movement is a good one, says Wool, who has learned to modify her routine and her expectations as an athlete with AS. These are her secrets to maintaining an active existence.
Start Slow—and Then Watch How Far You Go
“I think it’s important for you to meet your body where you are—wherever that is,” she says. “That might mean you just start out walking or you’re going slow on a bike. Keep an eye on your progress. People would be surprised what your body might be capable of regardless of your ability or disability.”
Invest in Adaptive Gear
“I’m not afraid to use mobility aids as I need to,” Wool says. “I have Sidestix, custom-made adventure crutches with a shock-resistant forearm that allow me to go hiking. I also have a couple of canes for when I’m walking my dog. A year ago, I got a manual wheelchair to use when I have a flare-up. It allows me to leave my house and be a person if I’m having a bad pain day or I’m recovering after a tough set of workouts. And then I have my custom-made racing chair that I love.”
Move for More Mobility
“This can look like different things to different people,” she says. “We know that movement is really powerful, especially with the stiffness and inflammatory nature of AS. Plus, I always want to tell people about the many amazing mental and psychological benefits to having your endorphins flow when you exercise.”
Try Something New
“It’s important to mix things up when it comes to exercise,” she says. “Know that you shouldn’t be afraid to try something even if you end up not liking it! For a while, I was convinced I couldn’t go back to running. But then I realized that even though I can’t run on concrete, I can do short runs on a rubberized treadmill.”
Go With Your Gut
“I’ve noticed that doctors or physical therapists tend to make exercise recommendations like ‘you should try swimming or Pilates or yoga,’ but it’s important to figure out what fuels your fire and what will work if you’re potentially pushing through pain,” she says. “Exercise on its own is fine but you won’t stay motivated and establish a routine if it’s not fun or enjoyable.”
Join a Community
“Community is perhaps the most critical thing I’ve found in this entire journey,” she says. “When I was first diagnosed, I felt really isolated and lonely. Then I joined Achilles International. They do adaptive racing and I also got involved with a wheelchair dance group. It made such a difference in my life.” For Wool, the feeling of having someone relate to who is on a parallel journey has made a huge difference in her life.
Find Inspiration From Others
Wool has a friend with a different condition who shares her love of hiking on crutches. “It’s awesome to be connected to someone who really inspires me for what she’s able to accomplish physically,” Wool says. “She has kept me motivated through the challenges I experience on my own journey.”
Manage the Pain
“Recovering from a workout can be tough, especially when I’m in a lot of pain,” she says. “What I’ve learned is that it’s okay to take a day off and to need more help to be comfortable after an intense race or workout. Now that I know how to manage my body afterwards, I’m fine doing a hard workout. I don’t ever want to be afraid to exercise.”