Nov 6 / Jamie Boder

Living with Ankylosing Spondylitis: Finding Hope

Being diagnosed with ankylosing spondylitis (AS) and Crohn's disease at just 18 changed my life. I could barely walk, had to give up skateboarding, something I'd loved since childhood, and struggled to imagine what my future might look like.


But meeting others who were living well with axial spondyloarthritis (axial SpA) helped me see that there was still hope, even when things felt overwhelming.


In this personal article, I share my journey from struggling with symptoms as a teenager to finding hope, rebuilding my confidence and returning to the things I love. I also explore the lessons I've learned along the way, how my experiences led to the development of Yoga for AS, and why helping others feel less alone has become such an important part of my mission.

Table of contents

1. Growing up and getting diagnosed

2. Finding hope and a way forward

3. How this led me towards supporting others

4. My professional background and how Yoga for AS has evolved

5. What Yoga for AS means to me today

6. My relationship with axial SpA today

Growing up and getting diagnosed

Growing up, I had a pretty difficult childhood and teenage years, and I'd experienced health issues for as long as I could remember. Skateboarding was a huge part of my life from around the age of nine, and it was something I could always find peace in, whatever else was going on. It became a big part of who I was, not just because I loved doing it, but because of the friendships, community and sense of identity that came with it.


I actually remember experiencing what I now recognise as symptoms of axial spondyloarthritis (axial SpA) when I was around 13. I was in a gym and my hip was hurting, so I went up to a trainer and asked for some stretches. At the time, I thought it was just an injury, but looking back, I suspect it was referred pain from inflammation around my sacroiliac joints. I also remember being at a skateboarding competition and having awful pain, again assuming I'd injured myself.


Alongside this, I'd been dealing with digestive problems for as long as I could remember, which eventually turned out to be Crohn's disease. Around the time of my diagnosis, I was sometimes going to the toilet ten times a day, passing blood and dealing with all the other difficulties that come with having a condition like that. So it wasn't just the pain and mobility issues from axial SpA. I was dealing with a lot physically, at an age when most people are just getting on with being teenagers.


For years, I was given different explanations for what I was experiencing, including sciatica, growing pains, IBS and hip bursitis. I was trying to understand what was happening, but nobody seemed to be putting all the pieces together. Things became increasingly difficult during my teenage years, and it was really thanks to a mentor I had at college, who lived with quite severe rheumatoid arthritis, that I eventually saw a rheumatologist. My mentor suggested that I might need to see a specialist, and looking back, I genuinely don't know how much longer it would have taken to get diagnosed without that encouragement.


Eventually, at 18, I was diagnosed with axial spondyloarthritis and Crohn's disease.


Strangely enough, my initial reaction to the diagnosis was relief. Finally, I had an explanation for what was happening, and I thought, okay, now I know what I'm dealing with, I can start figuring out what to do. But that feeling didn't last particularly long. Like most people, I turned to the internet to learn more about my condition, and I remember being completely overwhelmed by what I found.


There was so much darkness in many of the online spaces I came across, and I felt they were missing that sense of hope and possibility. Darkness is simply the absence of light, and I think that's what was missing from so many of those spaces. People were understandably sharing their difficulties, but there wasn't always much opportunity to hear about what was possible or from people who were finding ways to live well with the condition.


Physically, things were very difficult. I could hardly walk, I'd had to stop skateboarding, and I ended up dropping out of university because I was too unwell. The toll, both physically and mentally, was simply too much. But beyond the physical symptoms, one of the hardest things was feeling alone. I had people around me, but very few really understood what I was going through. I'd mention arthritis and people would say things like, "Oh yeah, my grandma has that," without necessarily understanding how much it was affecting my life.


Skateboarding was something I'd relied on for so much of my childhood, and I ended up being unable to do it for years. Losing that was really difficult, particularly when I didn't know whether I'd ever be able to get back to it. I was 18 years old, struggling to walk, dealing with two chronic conditions and trying to understand what the rest of my life might look like.

Finding hope and a way forward

One of the most important things that helped me find my way forward was meeting other people living with axial SpA and seeing that they were able to have a good quality of life. Until then, I'd heard plenty about the worst-case scenarios, but very little about people who were doing well and finding ways to live meaningful, active lives alongside their condition.


Meeting those people helped me understand that although I couldn't control everything about my health, there were things I could do to support my quality of life. I started to recognise that I had options and some agency over my situation, which was incredibly important at a time when I'd been feeling quite powerless.


I've always had a fairly obsessive personality, which definitely has its downsides, but in this case it meant I became completely absorbed in learning about health. I started studying yoga and yogic practices, strength training, nutrition, gut health, mind-body approaches and the wider biopsychosocial model of health. I wanted to understand all the different factors that could influence how I felt and functioned, and what I could actually do about them.


Initially, I think I was looking for that one magic solution, whether it was a particular exercise, stretch, supplement or something else. Over time, though, one of the biggest things I came to understand was that it wasn't necessarily about finding one thing that would change everything. It was much more about the systems and habits we build over time, and finding approaches that are realistic, sustainable and appropriate for our individual circumstances.

I also began to appreciate just how differently axial SpA can affect people. There isn't one version of this condition, and while there are patterns and principles we can learn from, everyone has different needs, experiences and circumstances.

How this led me towards supporting others

As I continued exploring different ways of managing my own health, I started connecting with more people living with axial SpA through social media. That was really where the community side of things began for me, and it became clear quite quickly just how valuable it was to connect with people who understood what living with the condition could be like.


I also started noticing how many people were struggling to find suitable support when it came to movement. People were going to yoga classes, Pilates classes or other exercise sessions where the instructor didn't understand their condition, or they simply didn't know how to adapt things to their needs. Others knew that exercise was important but felt overwhelmed by the amount of information available and weren't sure where to begin. Others found it made things worse.

I started thinking about how I could use what I'd learned through my own experiences to help other people. I remember having this slightly funny idea that if I became a yoga teacher, I wouldn't have to spend my life sitting behind a desk, which seemed like a pretty good plan for someone living with axial SpA. Ironically, I now spend an awful lot of time behind a desk running Yoga for AS and my coaching practice!


But the underlying motivation was that I wanted to find a way to use some of the difficult experiences I'd been through to support others. Having experienced how isolating axial SpA could feel, I knew how valuable it was to have people around you who understood, and I wanted to contribute to creating that kind of environment.

My professional background and how Yoga for AS has evolved

Alongside my own experiences, I've spent much of the last decade studying different aspects of health, exercise and wellbeing. I'm a qualified yoga teacher with specialist training in Yoga for Arthritis, as well as a qualified personal trainer. My work also incorporates strength and conditioning and nutrition, both of which I've studied at university level and continued to develop through years of practical experience, ongoing education and mentorship.

I've been fortunate enough to receive mentorship and learn from some incredible people and institutions along the way, which has had a huge influence on how I think about health and how I approach my work. I've always tried to remain curious and open-minded, while continuing to develop my understanding of the research and how it translates into practice.

Over the years, I've also had the opportunity to work with hundreds of people living with axial SpA and other forms of inflammatory arthritis, through group classes, workshops and individual coaching. I've learned an enormous amount from those experiences, and I think they've been just as important to my development as my formal education.

Yoga for AS has changed quite a lot over the years, and so has my own approach to teaching and coaching. What started with a particular focus on making yoga more accessible to people with axial SpA has gradually developed into something much broader, incorporating strength training, mobility, different movement practices and the non-physical aspects of yoga, alongside education and individual support.

My coaching has evolved in much the same way. Earlier on, I think I was more focused on finding the right exercises or practices to help someone with a particular problem. While that's still important, I've come to appreciate just how much more there is to supporting someone living with a long-term condition.

We're not just an inflamed joint or a mechanical area of the body that needs fixing. We're whole people, and our physical health, mental health, relationships, experiences and the things that matter to us are all interconnected.

I've also learned that even when two people have the same diagnosis, their experiences can be completely different. What works well for one person might not be appropriate for another, and that's why I think having a range of tools and being able to adapt your approach is so important.

Sometimes supporting someone involves helping them build strength, improve their mobility or find ways to return to activities they've stopped doing. Other times it's about exploring their nutrition and dietary habits, making realistic lifestyle changes, working through the barriers that are stopping them from getting started, building confidence, understanding how to manage setbacks or simply having someone who understands what they're going through.

I think the combination of living with axial SpA myself, my professional education, the mentorship I've received and everything I've learned from the people I've worked with has really shaped the way I approach supporting others.

And although living with axial SpA gives me an understanding of some of the challenges people face, it certainly doesn't mean I automatically understand everyone's experience. If anything, working with so many different people has reinforced just how individual this condition can be, and how important it is to listen, adapt and continue learning.

What Yoga for AS means to me today

Looking back over the years, I think the thing I'm most proud of is the sense of community we've developed and the people I've had the privilege of meeting and working with.

I've seen people come into Yoga for AS feeling completely hopeless, unsure what they can do and sometimes feeling as though their world has become smaller because of their condition. Seeing those same people gradually begin to recognise what they're capable of, build confidence and make meaningful changes in their lives has been incredibly rewarding.

One of the biggest things I've come to appreciate is the importance of reducing overwhelm. We live in a world where there's more information available than ever before. We've got the internet, ChatGPT and endless advice about what we should and shouldn't be doing for our health. Often, I think what people really need is support in cutting through that noise, understanding what's relevant to them and working out how to apply it in their own lives.

That's a big part of what I want Yoga for AS to provide today. Accessible yoga, strength training, mobility and other movement practices, but also non-physical practices such as breathing, relaxation and mindfulness, alongside education, community and more individualised support.

I want people to be able to explore these things at a level that works for them, without feeling they need to fit into a particular type of class or approach. And just as importantly, I want Yoga for AS to be a place where people can connect with others, share experiences and feel part of a community that understands what they're going through.

I certainly don't have all the answers, and my own understanding and approach will continue to change as I learn more. But I think that's an important part of working in this area, being willing to keep learning, questioning things and adapting what you do based on the people you're trying to help.

My relationship with axial SpA today

My relationship with axial SpA has continued to evolve over the years. I've been fortunate enough to return to things I once worried I'd never be able to do again, including skateboarding, and I've discovered other things I love, like surfing and strength training.

What's also important to me is that, despite having axial SpA for well over a decade, there's been very little progression of the disease since I was diagnosed. That's something I'm incredibly pleased about, particularly given how frightening some of the information I came across was when I was first diagnosed. Of course, I can't say exactly why my disease has followed the course it has, and I know that everyone's experience is different, but it's something I feel very fortunate about.

That doesn't mean axial SpA has disappeared or that I don't still have difficult periods. I had a very challenging year last year and experienced a flare earlier this year, which has mostly settled now. I still need to pay attention to my symptoms, keep up with monitoring and adapt things when necessary, while trying to live life as fully as I can.

And while I love being active, I think one of the biggest things I've learned is that managing a condition like this isn't simply about how much you can lift, how flexible you are or how far you can walk. It's about being able to do the things that matter to you, whatever those things might be. For me, that's included skateboarding and surfing, but for someone else it might be playing with their children, getting back to gardening, going for a walk or simply feeling more confident in everyday life.

I sometimes joke that I had my midlife crisis at 18, because being diagnosed so young forced me to think about my health, my future and what really mattered to me in a way that most people probably don't have to at that age.

I wouldn't say I'm grateful for having axial SpA, but I am grateful for many of the lessons I've learned through living with it. It's influenced how I approach my health, the work I do and the way I want to spend my life.

If I could sit down with my 18-year-old self, I'd be there for hours, but fundamentally I'd want to help him feel less overwhelmed. I'd help him understand some of the most important things he could focus on, explain that there are different ways to support his health and, perhaps most importantly, make sure he knew he wasn't alone.

That's ultimately what I hope people find when they come across Yoga for AS. A community where people understand one another, where we can acknowledge the difficult realities of living with axial SpA without losing sight of the possibilities, and where people can access support that meets them where they are.

For me, that's always been at the heart of it: helping people feel less alone, find some agency over their health and move towards the things that matter to them.

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