…how it enriched and changed the quality of my life.
Guest blog from EULAR Edgar Stene Prize essay competition entrant, Geoff Lindsay.
I’ve lived with axial Spa for 50 years.
November 1973. I’m 24. Every time I put on my tight bell-bottom Levi jeans I got bad pain in my left hip. Am I going crazy? How can wearing jeans give me a pain so bad I can hardly walk? Walking up stairs is very painful. Stepping up a kerb is a task I would limp another twenty metres to avoid.
I was 36 years undiagnosed until 2009.
I was elated. Can you imagine that? I’ve just been told I have a painful, incurable, progressive, invisible, systemic auto-immune disease.
But there was NASS.
I found NASS, the UK National Axial Spondyloarthritis Society. My luck was in.
They had a local group where I did an hour of hydrotherapy and then an hour of exercise in the gym, and met loads of other people with AS.
Think of the isolation and ignorance that must have been the norm for a quarter of a million Brits living with AS before the early 1970s when NASS was formed.
The long view, the big picture, is that NASS has raised awareness and taken action. To my astonishment, NASS brought out a campaign showing that uveitis is a symptom of AS. I had had outbreaks of uveitis for 27 years and nobody had made the connections with AS.
NASS inspired me to more.
That could have been it really. Medication plus my NASS group. Less pain, stiffness and fatigue.
But I had started going to yoga class in 1990 nearly 20 years before being diagnosed, and knew that yoga was helping my “bad back”. There was a lightbulb moment after being away on a yoga weekend in 1993 when we practised three times a day for three days with a yoga teacher who was also a qualified Doctor of Medicine. After a long journey home, I ran up the stairs to the loo.
I ran up the stairs.
I hadn’t done that in years, never mind that it was light and easy and limber. It had to be down to the yoga.
Then I found out through my NASS support group about a two weeks course for people with AS at the Royal National Hospital for Rheumatic Diseases in Bath, England.
The RNHRD AS Specialist Physiotherapists said that the stretching in yoga breaks up the inflammation, relieving the pain. So I started banging the drum for yoga for AS. More like banging my head against a brick wall. But NASS and all the healthcare professionals were saying you have to exercise.
Then I met Jamie in the NASS group.
In 2018, a young man called Jamie turned up at the NASS support group. It was my job to meet and greet. Jamie was only recently diagnosed at 18, having had symptoms since 14, and was in a dark place. A competitive skateboarder, he had to stop skating. After hydrotherapy, I was practising my yoga in the gym because that is a golden hour after hydro to stretch.
Jamie came up to me and asked what I was doing that had kept me in reasonable shape. When I said that the medications had really helped and also the yoga, he asked me to show him some yoga. This old yogi, knocking on 70, and this young skater, not yet 20.
That was the kickstart of Yoga for AS. Jamie went away and practised yoga every day for a year, occasionally coming to the NASS group.
NASS has a Facebook page. So Jamie suggested we start a Yoga for AS Facebook page.
I said yes, thinking about 50 people around the world think yoga can be modified to relieve AS pain, stiffness and fatigue. Three years later the Yoga for AS group has 3,320 members globally. Facebook at its best.
We carried on working together. We set our goals and would not listen to the naysayers. Our goals became safety, benefits and enjoyment, all the things that NASS has been advocating for 50 years. We said we are experts by experience. We can modify yoga so that it is safe for us with AS. Both Jamie and I did the training to become qualified yoga teachers.
Gradually, NASS came onboard.
NASS invited us to give Facebook Live events where we gave Yoga for AS classes. This gave us the confidence to start giving one to ones and then live classes on Zoom. Three years later we give four classes each week, and have over 280 recordings of those live classes that people with AS can watch on catchup.
NASS has a library of resources, so Jamie said c’mon Geoff, we can do that too. This old yogi is having to learn so many new tricks. Jamie’s drive and enthusiasm and embrace of social media led us to research, write, film and put out on the website Jamie built from scratch with no money, some 200 hours of Yoga for AS content, in 20 Courses, all graded according to your level of ability.
Because we have the backing of NASS, other collaborations became possible.
We have partnership agreements with Spondylitis Association of America, Axial Spondyloarthritis International Federation – some 50 organisations in over 40 countries, Canadian Spondylitis Association, Arthritis Foundation, Yoga for Arthritis.
Our Yoga for AS documentary was released in January 2024.
Watch here for the story of how and why Yoga for AS came about.