We've Absolutely Smashed Life

A restaurant, a conversation with my husband and an unexpected lesson in Disability Pride Month.

July is Disability Pride Month, and every year my social media fills with content about identity, acceptance and learning to make peace with a body that doesn’t always cooperate. I always enjoy reading it because there is something reassuring about recognising pieces of your own life in somebody else’s. Chronic illness can be incredibly lonely, and finding people who understand the endless calculations, compromises and tiny negotiations that shape your days never really stops being comforting.

This year, though, I found myself thinking about something slightly different.

Disability Pride Month has a way of making you reflect on your life, and once I’d started doing that I found myself thinking about my career too. I’ve now been working for more than twenty years, and somewhere between wondering what I’d like the next chapter to look like and looking back at everything that’s already happened, I realised I was taking stock in a way I never normally do.

Looking back over my own career, I wasn’t struck by anything I didn’t already know. I know the jobs I’ve done, the responsibilities I’ve held and the moments where people have trusted me to make difficult decisions. I know I’ve built a career I’m genuinely proud of.

It was later, after I’d stopped thinking about work altogether, that I caught myself having a completely different conversation.

My first thought wasn’t, You’ve done well.

It was, You’ve done well... considering.

That single word sent me off down a train of thought I haven’t quite managed to get off since.

When you’ve lived with chronic illness for twenty-five years, it works its way into almost every story you tell. That’s hardly surprising. It has shaped every adult decision I’ve ever made, from the jobs I’ve accepted to the holidays I’ve booked, the way I work, the way I recover and the amount of energy I spend weighing up whether I can squeeze one more thing into the day without paying for it tomorrow.

The trouble is that, after a while, the illness can start to feel like the only logical place to begin.

I’ve had ME and fibromyalgia since I was seventeen, which means there has never been an adult version of me untouched by them. Every memory I’ve got comes with the illness already sitting somewhere in the background, so it’s easy to forget that while all of that was going on, life was happening too.

Not life in the abstract. My actual life.

There were school runs and parents’ evenings. There were birthdays, mortgage applications, Christmases, holidays that needed military-level planning and weekends where absolutely nothing happened except a family film and somebody asking what was for tea. There were promotions, bereavements, friendships that lasted and friendships that didn’t. Somewhere in the middle of all that I went back to university (twice), graduated (twice), changed careers and eventually found myself leading communications through some of the biggest moments of my professional life.

I became a magistrate. I started writing again. I somehow reached my forties still convinced there are plenty of things I’d like to do next, despite regularly discovering that my ambition and my energy remain engaged in a long-running contractual dispute.

And somewhere along the way I also developed very strong opinions about Michelin-starred restaurants, beautiful hotels and whether a bathroom mirror is pulling its weight.

When I stand back and look at those twenty-five years, what strikes me is how much life there is to look back on.

A few weeks ago my husband and I escaped for a very last-minute, very extra night away. We were sitting in a beautiful restaurant, eating bread that was frankly far better than bread has any right to be, when I looked around the room and, with some reverence, said, “We’ve absolutely smashed life, you know.”

I surprised myself as much as him. Twenty-five years earlier we’d been raising babies, worrying about money and trying to work out adulthood while barely feeling like adults ourselves. Sitting there, I realised I wasn’t looking at the restaurant. I was looking at our life. We have done a pretty damn good job, honestly.

Whilst living through it all, I wasn’t collecting achievements. I was just getting on with doing this thing we call life. I think that’s why I’ve never really connected with the idea that my career, or my degrees, or these essays exist as evidence of resilience. They were never designed to prove anything. I’ve always liked work. I like solving problems, untangling complicated situations and finding the sentence that suddenly makes everything click into place. I enjoy leading teams and watching good people achieve things together. Long before Flare and Flair existed, I was the person making notes in the margins of books, rewriting paragraphs for fun and boring everyone around me by listening to song lyrics and asking, “But what are they really trying to say?”

Raising children felt exactly like raising children. It was school runs, wondering what to make for tea and occasionally questioning every life choice that had brought me to that particular Tuesday afternoon. University felt like lectures, deadlines and trying to fit another assignment into a week that already felt full. Building a career mostly felt like... work. Meetings, projects, mistakes, promotions, days where everything came together and days where I seriously considered a career involving absolutely no email.

It’s only when you stand back years later that those ordinary days start to look like a life. The illness changed how I got there. It never decided where I wanted to go.

I’ve started wondering whether we sometimes become so determined to acknowledge the extra barriers disabled people face that we accidentally change the way we talk about everything else.

I’ve now realised that I’ve started using my illness as the introduction to almost every achievement, as though the diagnosis is the most important thing you need to know before the rest of the story makes sense.

But that is daft, when I look back over the last twenty-five years, I don’t see a series of achievements that only become impressive once you add the medical context. I see a career that has challenged and fulfilled me in equal measure. I see the pretty awesome family we have built. I see a degree that completely changed the direction of my life, a marriage that has weathered more than either of us expected, friendships that have carried me through difficult seasons and a body of writing that still feels faintly surreal every time somebody tells me they look forward to reading it.

Of course the diagnosis belongs in every one of those chapters. It was there every single day. So was everything else that made me who I am.

My illness explains why there are recovery days after conferences and weekends that disappear into post-exertional malaise. It explains why I’ve become absurdly skilled at planning, why I know the location of disabled toilets in an alarming number of cities and why my calendar occasionally contains appointments labelled simply, “Lie down.”

For a long time, I thought pride was mostly about making peace with my body. Accepting that it works differently, letting go of the idea that I needed to earn my place in the world by pretending I wasn’t struggling and refusing to apologise for needing things that other people don’t.

What I hadn’t really considered before is that pride can also mean looking back over your life with a bit more honesty.

When I do that, I don’t see a diagnosis carrying me from one milestone to the next. I see twenty-five years of ordinary decisions that slowly became a life. I see work I’m proud of, children who somehow became adults while I was busy wondering where the years had gone, writing that has become an unexpected second career and a list of ambitions that is still reassuringly longer than the amount of energy I have available to pursue them.

That’s the story I want to tell this Disability Pride Month.