Thirty Years: A Health Journey

I silently celebrated thirty years since I was first diagnosed with a condition on Saturday.

It’s a strange milestone. It’s not a birthday or anniversary, but a reminder of a moment that changed my life. I was thirteen when a doctor told me I had Polymyositis, an autoimmune condition that didn’t fit my age, body, or story. Knowing what we know now, I can see why they said it, it partially explained why my muscles were weakening, I walked differently, and struggled. They told me I might not live past sixteen. At thirteen, I knew what that meant, but I didn’t understand it — not the way I do now.

Looking back, I realise I spent most of my teens and twenties living in that gap between knowing and understanding. I knew I had a condition, that I struggled, was different, and that my life wouldn’t be typical, but I didn’t see myself as disabled. I was just Martyn — the boy who walked funny, occasionally twitched and fell over, used a stick or crutches, pushed through school, achieved and thrived wherever I could, and tried to live as normally as possible. My mum insisted on that. She refused to let a diagnosis define me. She fought for me, and she taught me to fight for myself.

I did so much. I was a Sea Scout and later an Adventure Scout. I gained my Duke of Edinburgh Award. I went canoeing, sailing, camping. Later I went to pubs, clubs, and parties with friends. I got my GCSEs, A‑Levels, went to Uni, worked, and built a career. I got married and had my boys. A typical life, with one small exception.

Every predicted death date passed. I don’t think I ever truly acknowledged them. I pushed through without worrying. After a few years, new prognosis predictions meant very little. I simply knew they wouldn’t come true.

At twenty‑five, the diagnosis shifted to FSHD1. Suddenly the pieces made more sense. The progression was predictable. Yet even then, I didn’t fully grasp how deeply this condition would shape my life. Life still felt normal. I was still doing everything I wanted. My story was written in pencil, constantly erased and redrawn by new information, symptoms, and realities.

The biggest turning point wasn’t a diagnosis at all. It was the moment I stopped walking.

Moving into a wheelchair didn’t make me more disabled — it made the world more visible. I saw, with painful clarity, how deeply society is built for able‑bodied people. The kerbs, doors, attitudes, and assumptions. I had seen and experienced disability before, but not to the extent I did once I was in the chair. The exclusion that had always been there became unavoidable. That was the moment disability stopped being “health stuff” and became a lens through which I saw everything: relationships, work, faith, community, and the effort required to live in a world not designed for bodies like mine.

My vocation didn’t begin with disability.

It began with faith — a teenage search for meaning, grounding, and God in the midst of uncertainty. Disability became the place where faith and calling collided. When I entered the chair, people began gathering around me, asking questions not just about suffering, but about theology, justice, and belonging. They wanted to know how faith speaks into disability, and how disability speaks back.

Then came the moment that changed everything: a vicar whose theology harmed disabled people, framing disability as spiritual failure or dark spiritual influence. I knew it wasn’t true. Years of reading, learning, and wrestling had taught me better. I challenged it. I fought it. I was part of the reason that harmful leadership stepped back. That experience opened my eyes to how many disabled people face the same spiritual violence. Disability ministry wasn’t optional. It’s necessary. I have a voice that can help — and theological college helped give that voice accountability and grounding.

Since then, the work has grown — coffee mornings for disabled people and carers, advocacy, pushing for accessibility in Rochester (Google my name and you’ll see the news pieces), building community online and in church, studying disability theology, and dreaming of a doctorate that continues this work. A community has formed around this journey — not because I sought it, but because people needed it. I was simply willing to acknowledge them. And, of course, this blog. The years of sharing my life and health. Seeing the difference that telling a story can make.

Thirty years after that first wrong diagnosis, I find myself reflecting not with bitterness, but with a thankful heart and hope. My health journey is older than my children. Older than most of my friendships. It has shaped, stretched, broken, rebuilt, and called me into spaces I never expected.

If thirteen‑year‑old me could see the man I’ve become — the advocate, the theologian, the church leader, the friend — I think he’d be surprised. He never wanted to acknowledge his disability. If my mum could see me now, I hope she’d be proud.

Thirty years is a long time.

If this is who I am now, then — God willing — bring on the next thirty.