By Geoff Lindsay, CYT, and Jamie Boder, CYT
Editor’s Note: In this edition of “Your Stories,” we present the personal stories of Geoff and Jamie, certified yoga teachers and founders of the U.K. group Yoga for AS. Over the past few years, Geoff and Jamie have drawn on their own experiences with spondyloarthritis (SpA) and yoga to build a vast online library of yoga courses and live online classes modified and adapted to those living with SpA. Read on to learn more!
I first had symptoms of SpA in November of 1973, but was not diagnosed until December of 2009, 37 years later, during an intense flare. I started going to yoga classes once a week in 1990. In 1992, I spent a weekend away at an intensive yoga retreat. It was about a four-hour drive back home, and by the time I arrived, I was desperate to use the restroom. When I got in, I ran up two flights of stairs, skipping steps at a time. When I reached the top, it suddenly dawned on me: I had run! I felt lighter and so much better than before the weekend. It was at this moment that I realized that yoga had the ability to relieve my pain and stiffness. I began to take it seriously as a management strategy for what I thought at the time was simply chronic back pain. I thought I just had a “bad back”—I had no idea that the exercise and stretching I was doing was helping my SpA. I also knew nothing about sacroiliitis, or even that there is such a thing as inflammatory back pain. During one very bad flare in 2009, I finally received an accurate diagnosis. By then, both of my SI joints and three vertebrae in my neck had fused.
In 2010, I was in the two-week residential treatment program for axial SpA at the Royal National Hospital for Rheumatic Diseases (RNHRD) in Bath, England. The RNHRD senior SpA physiotherapists explained that it was likely my 20 years of regular yoga practice that had helped me retain so much of my mobility, despite some fusion. This was motivating to hear because at that point I had high disease activity, was in a lot of pain, and was very concerned.
However, I believed in what they were telling me, and recommitted to regular yoga classes. Along with the help of medications, my symptoms improved. In the RNHRD SpA treatment program again in 2012, I wrote “Yoga for AS” on a note to myself, and that drove the last 10 years of creating and practicing yoga classes modified for those of us with SpA. I’ve had no more boney growths since 2012. I know there is some luck involved, but for me it has been the combination of medication and yoga that has improved my AS. The better your self-care, the luckier you get.
My SpA symptoms began when I was 14. I experienced pain in my hip and groin. Unfortunately, it was written off as “growing pains.” Also, since I was a competitive skateboarder, it was easy to dismiss the pain as some sort of sports-related injury. For the next few years, this pain would come and go. But when I reached age 18, I could hardly walk.
In 2016, I went to see an orthopedic consultant who told me it was hip bursitis, but something felt off. I asked to be referred to a rheumatologist. One week later, after some tests, I was diagnosed with axial SpA. Phew, relief. I knew what it was, so now I could “fix” it and get back to my normal life. However, I was then told this disease was incurable and progressive. I took to the internet to learn more—bad decision. I read story after story that left me feeling hopeless, fearful, and overwhelmed.
I reluctantly agreed to visit an AS support group. That was where I met Geoff. I saw that at nearly 70, not only could he cycle to the group, but he was practicing yoga. From a standing position, he could touch his toes and put his palms flat on the floor! My jaw dropped. At that point, I had the idea that AS meant a loss of mobility that would only get worse with age. “Maybe one day I could touch my toes,” I realized. I asked Geoff what he was doing differently from everyone else. He told me, “I have been practicing yoga for about 30 years and modifying it for AS.” Yoga? I pictured a young, slim, bendy woman being able to get into a pretzel. I couldn’t relate. Anyway, Geoff took me through a yoga class tailored for AS, showing me how to modify and adapt the practice safely and effectively. After the session I felt lighter, with less stiffness and pain.
Then, it hit me: “This is it! I will commit myself to this every day, no matter what. One day I will become a yoga teacher and teach yoga to people with AS.” I practiced consistently for one year. My flexibility and range of motion improved, my fatigue decreased, and I felt a new path open up for me. Yoga was the catalyst for me to recognize that I could attain a better quality of life. I went on to train as a yoga teacher and delve deeply into different practices, experimenting with and researching protocols to help AS. After six years of consistent practice, I can finally put my palms to the floor! Thanks for the inspiration, Geoff.
Geoff and I maintained contact over the years and decided to start a Facebook group, mainly because at that time there weren’t many supportive or solution-focused groups out there. A few hundred people joined, and we now have over 3,000 members. We began to teach one-on-one yoga classes. When we got feedback that it was helping others, we knew this had legs. We then decided to start live, online classes during the pandemic.
Yoga for AS:
We began to understand that when you meet a person with AS, you meet one person with AS. Every single person has a unique experience. Some people have very little mobility and are only able to do small movements, and others have a lot of mobility and can move much more easily. We knew that yoga could benefit everyone, so we put together a survey that asked people with AS what they would like from a yoga program. The overwhelming majority wanted online courses that they could follow at their level of ability. We saw that many exercise programs out there were only tailored to one ability level, which was either too challenging or not challenging enough.
So, we designed, wrote and developed (with input from others with AS) a series of nine courses for all levels of ability.
Yoga for AS developed through both our personal experience of living with this condition, and our experience as yoga professionals. The most important element in our development of Yoga for AS was working with hundreds of others with this condition. We have learned what works and what doesn’t and how to ensure the classes and courses are safe and specific to those with SpA. We also consult with leading rheumatologists, physiotherapists, immunologists, and other health care professionals, plus everyone’s family and friends, to make sure what we do is evidence-informed but also pioneering.
Gradually, the vision for Yoga for AS became clear to us as we worked together. Our vision is to show people with AS that they can practice yoga safely and effectively. It is clear that stretching, deep breathing, strengthening, relaxation techniques, and mindfulness have the power to change the lives of people with AS. We want to show the world that with the right guidance and expertise, yoga can work for anyone.
These are some of our guiding principles:
- When you’re told you have AS and it’s painful, incurable, progressive, invisible, and systemic, you need a positive practice to recover a better quality of life.
- Yoga has to be modified for AS and for the varied levels of dis/ability and co-morbidities people may experience.
- Yoga for AS has to be safe. It has to bring hope of relieving pain, stiffness, and fatigue, and it has to be enjoyable!
- We who live with AS have to become experts by experience.
It’s been a lot of work, but as of now we have created 20 Yoga for AS courses available online in our virtual library, with nine of those courses graded to specific levels of ability—from our foundation course, which is practiced from a chair and is very gentle, through course eight, which is a much more intense practice. We offer over 200 hours of Yoga for AS classes in this online library. The library also contains courses specifically for symptoms such as fatigue and specific areas of the body, such as the neck or SI joints. We also teach live classes each week on Zoom, and you can watch any of the 100-plus recordings of those classes, attended by people with SpA from around the world. To learn more, visit yogaforas.com.
We hope you will give yoga a try! It changed our lives. It could change yours, too.
You can also find Yoga for AS on, Instagram, our Facebook Page, our Facebook Group, and YouTube.