15/07/2025
"We’re told, as writers, to write what we know. It has taken me years to be able to even attempt to articulate my journey with Ehlers-Danlos syndrome. In part, I think that’s because I know there is no end. How do you write a story when you don’t know how it’s going to end?
I grew up rowing competitively. At 15, I had my first hip surgery after being diagnosed with labral tears and impingements. I was told it was straightforward – a quick fix that would let me get back to doing what I loved. But the pain didn’t go away. Despite what I felt in my body, I was dismissed by my surgeons and thought to be overdramatic – a teenager who couldn’t possibly know what my body felt. It took almost two years of pushing for answers to discover the surgery had failed. That set the tone for the years to come: pain, surgeries, and confusion. Four hip operations later, I had to retire from the sport I loved. I was labelled “unlucky” – an athlete not built for high performance. I felt truly lost, as though I had been stripped of all purpose and began to hate myself – why couldn’t I just push through the pain?
After I stopped competing, things got worse. My joints became increasingly unstable. Everyday tasks – grocery shopping, cooking, even walking – became painful. Then other problems crept in – digestive trouble, weird skin reactions, breathing issues, a racing heart, constant fatigue. It felt like my whole body was turning against me. I kept asking for help: physiotherapists, GPs, consultants, anyone who would listen… but no one seemed to connect the dots. So, I started advocating for myself. I researched obsessively. That’s when I found Ehlers-Danlos Syndrome. I still remember the overwhelming relief – the feeling of everything finally making sense. When I was formally diagnosed, I began the exhausting but essential process of trying to get better.
There were years where I felt I was nothing more than my illness. Endless appointments and medical gaslighting left me depressed and isolated. But little by little, I’m learning to advocate for myself – and to give myself grace. One day, I hope to feel fully at peace with who I am, EDS included.
Going through all of this as a teenager and young adult has shaped me in ways I’m still uncovering. I wish I could say there was a turning point where things got easier – but the truth is, I still struggle every day. I can’t remember the last time I felt truly carefree. And yet, I’ve grown. I’ve become someone deeply empathetic, someone who’s learnt to meet pain and challenges with resilience. When I was first diagnosed, I had to confront something I hadn’t expected: that this wasn’t a challenge I could overcome with effort or determination. I’d spent most of my life in competitive sport, always pushing for the win – but this was different. This wasn’t something to beat. It was something I had to learn to coexist with. In a strange way, the sicker I’ve become, the stronger I’ve had to get.
At 24, I now work as a director and writer. The arts have become more than just a career – they’re a lifeline. A space where I can grieve, explain, shout, and cry. They give me the freedom to tell my story on my terms, without apology or expectation. My latest show is a testament to that.
Anatomy of Pain began as a way to articulate my experience of living with chronic illness and invisible disability. As my health declines, I’ve found myself navigating medical systems that often misunderstand, overlook, or outright disbelieve people living with long-term conditions. The show grew from that space: the surreal, often contradictory experience of seeking help while being doubted, of being unwell and still having to perform legitimacy. I wanted to make something that reflected that reality – its frustration, its absurdity, and the quiet devastation you’re forced to confront.
There’s a particular urgency in bringing this work to the Edinburgh Fringe now. With planned cuts to disability benefits in the UK, the climate for disabled people feels increasingly hostile. While the government plans further cuts to disability benefits, many of the existing systems already fail to meet the needs of those they’re designed to support. From endless assessments to administrative barriers, the reality for many disabled people is one of exhaustion. Anatomy of Pain doesn’t just reflect on individual experience – it asks what happens when structural failure becomes the norm, and support becomes something you have to fight for.
If you’re based in Scotland, or planning to be in Edinburgh for the Fringe, I would love to welcome you to the show. If you want to follow along the journey, please do follow our Instagram account: .
My hope is that Anatomy of Pain offers space for people to feel seen, heard, and maybe a little less alone." - Aoife
Dates: 1st to 9th August
Venue: theSpace @ Surgeons' Hall. (Venue 53)
Time: 13:50 (55 mins run time)
Tickets: https://www.edfringe.com/tickets/whats-on/anatomy-of-pain
