6 AS Warrior Tips for Living Your Best Life
Advice for the newly diagnosed from people who know exactly what you’re going through.
If you're struggling to come to grips with a chronic diagnosis, think about Mars—yes, the Red Planet—or something else that you’re truly passionate about. That’s the advice Tanya Harrison, 35, from Washington, DC, who calls herself a “professional Martian,” offers for anyone with a chronic disease. Harrison, who was diagnosed with ankylosing spondylitis (AS) at age 14, is now a geoscientist at Planet Labs and has worked in mission ops for three NASA Mars missions.
“Find something that you love and are passionate about to act as a distraction and/or a motivator,” says Harrison. “For me, that thing was Mars and space. Going after my goals has pushed me through the pain and frustration of dealing with AS, and I want others to find the thing that does that for them.”
From finding your passion to taking a closer look at your chair, the best advice comes from people who have been there, done that. Meet Harrison (and two other people with AS) who get real about what makes their lives easier.
Motivate Yourself to Move
Exercising consistently on a daily basis can have a significant impact on common AS symptoms such as back pain and stiffness. But some days that’s much easier said than done.
“AS can lead to this cycle of being in pain that makes you not want to move, which just makes the pain worse and makes you want to move even less,” says Harrison. “You have to find ways to motivate yourself to move, even if it’s not much.” She kicks off her day with a 10-minute low-impact cardio workout. “It makes a noticeable difference, even though it’s not a big time commitment,” Harrison says. “Of course, I still have days where I feel too stiff in the mornings to move much, but I try to do what I can. Even a few hip bridges and spine twists while lying on the floor help get me moving.”
New York City-based Sandra Voss is 34-year-old social worker, yoga teacher, and support group leader for the Spondylitis Association of America, a national advocacy organization. Voss uses a structured schedule and an up-front financial commitment to help hold herself accountable when it comes to exercise. Swimming adds low-impact cardio and movement to her routine. Due to the pandemic, she now has to book a time and pay in advance to swim laps, making it more likely that she’ll go. And rather than pay-as-you-go for Pilates classes at her favorite studio, she buys a monthly pass, signs up for specific class times, and puts them on her calendar.
Switch Up What You Sit On
Sitting for long periods of time can make AS symptoms, especially back stiffness, worse. That means what you sit on matters even more, says Voss, who was diagnosed with AS in her late 20s. Voss recommends trying out as many different sitting options as possible, setting up the ones that work for you, and staying on the hunt for new options.
Throughout the day, she rotates sitting on an exercise ball, an ergonomic chair, a sit-stand desk, a kneeling chair, her bed, the couch, and a meditation cushion. She also has an assortment of lumbar support pillows and ergonomic cushions.
The downsides to having multiple choices include the cost and the space they take up. “It took me a while to accept that I needed all those things,” says Voss, who prefers to be a minimalist. “But when you have AS, it’s essential to be willing and able to adapt in the moment.”
Voice Your Needs Without Guilt
A chronic health condition like AS will affect your social life and relationships. Being accepting of your needs and willing to provide guidance to the people in your life can make those changes easier to deal with on both sides.
“I like being up for everything, but I’ve needed to make adjustments,” says Voss. Based on how she is doing, Voss has declined invitations she previously would have accepted and has cut the overall number of activities she commits to in a given week. “You need to be willing to address your own needs and not feel guilty,” Voss says, but acknowledges saying no to things can be difficult.
However, voicing your needs to the people in your life enables them to help you in a way that works best for everyone. “Practice asking for what you need,” Voss suggests. For example, Voss may tell a friend that a restaurant is too far away for her to walk and suggest they take the subway instead. “Especially when you don’t appear sick and are largely functional, friends and family may not realize what you’re going through,” Voss says.
Recalibrate Your Mindset
Many people with AS, including Boston personal trainer Alexander Levine, have symptoms for years and see multiple doctors before being diagnosed and getting a treatment plan. At age 19, Levine (now 32 years old) started having neck and shoulder pain. Sciatica made it hard to walk. But it wasn’t until he was 26 that he was “accidentally” diagnosed with AS when he injured his hip playing soccer and a lower back x-ray revealed significant sacroiliac (SI) joint inflammation.
After he got over the initial shock of having a disease he had never heard of, Levine made a conscious decision to let go of the anger and frustration caused by being misdiagnosed for so long. Not only has he tried to stay positive himself, he also transitioned from working with youth at Boys and Girls Clubs of America to specializing in helping other people with AS so that he could encourage them to push forward.
“There’s ‘going to the doctor,’ and there’s living your life,” Levine said. He focuses on helping clients find the right combination of safe movement, mindfulness, and nutrition. The goal is to enable them to better focus on their life passions, like Harrison focuses on Mars.
“You can have chronic disease and still be incredibly healthy in many different ways,” he says.
To help support the health of people ages 20 to 40 years old with AS, Levine and Voss have launched an initiative called SpondyStrong. The online class series combines a weekly group check-in with strengthening exercises and yoga.
Savor Small Wins
Harrison, Voss, and Levine all emphasized integrating movement into a holistic treatment plan for AS. Levine recommends building on whatever you already like to do—gardening, dancing, walking outside—anything that gets you upright and moving. “Any movement counts,” he says. “Fitness is not just about lifting weights.”
Research supports the positive power of “small wins” to increase ongoing motivation, reinforce good habits, and even increase overall happiness. Tracking when you exercise—go ahead and put gold stars on a wall calendar—gives you a record that you are making progress. It will also help you frame bad days as blips in your overall progress.
“If you’re having an off day, take a step back,” says Levine. “Be easy on yourself on those days. Look for balance over time.”
National Advocacy Organization: Spondylitis Association of America (SAA). spondylitis.org
Support and Exercise Group (Ages 20–40): SpondyStrong, firstname.lastname@example.org
“Small Wins” Research: Harvard Business Review. (2011.) "The Power of Small Wins." hbr.org/2011/05/the-power-of-small-wins
Personal Wins: Tanyaofmars.medium.com. (2021.) "My Disability Does Define Me." tanyaofmars.medium.com/my-disability-does-define-me-a7fc3b9d9881