I felt guilty writing the title of this post. It’s not something I’d relish reading from a friend or loved one and I can only imagine what it’s like as a parent. But I think people reading this without lived experience of illness need to understand this feeling as much as they possibly can. I also think, for those of us with illness, thinking – occasionally – in such stark terms can be useful motivational device. Too much is obviously a recipe for unhappiness!
And now a giant-shaped caveat, illness comes in many shapes and sizes and because of that, calculating life expectancy is a notoriously flawed methodology. Furthermore, for some people with chronic illness, working for even a few hours a week is an unrealised privilege. I’m well aware of how lucky I am to have built any kind of success or career for myself.
This year I turn 30. The life expectancy (median survival age is the correct term) for people with Cystic Fibrosis in the UK continues to be updated. In 2009 it was 34.4 years, in 2013 it rose to 36 and it is now over 40. When I was 13 years old, I keenly remember learning that the life expectancy at the time was a little over 30 years. It was a huge shock, but it also felt so far removed from my reality back then I didn’t dwell on it for long.
Essentially the median survival of CF has moved on so quickly in the last 5 years (thank you science) that 50% of people aged 30 today will live for the next 20 years or more. But the statistics and metrics that I have grown up with (and the wider expectations and social norms!) have led me to hold up my 30s as incredibly significant. And not to dwell on the morbid, but a life that could end with lung failure is rarely predictable; there’s no guarantee that I’d be able to work for as long as I might be around. Which is perhaps why, the idea of a 10 year career has often stuck in my mind.
So let’s imagine for a moment, you have 10 years left in your career; 10 years to make a mark, a name for yourself, a living, a lifestyle. Hopefully all of the above! What do you do?
Go steady? Secure part-time, low-demand (and likely low-paying) work which allows you to dedicate as much time to your health as it needs; upwards of 3 hours a day managing treatments and exercise and attending hospital appointments every month. Whether you’re interested in the work you’re doing or you find it fulfilling is neither here nor there.
How about a medium ground of working in an area you find mostly fulfilling but which leaves you with a little voice in your head asking, ‘but what if…’ from time to time? One which allows you some space to manage your health but never quite as much as you need; you postpone hospital appointments occasionally and sometimes miss your nightly treatment regime. You worry if your health is declining a little faster than it should.
Or do you throw caution to the wind and pursue a passion project? A dream with little security to back it up (that novel is still unfinished after all), but a promise of discovered purpose at the end of it. Because you might not live to achieve your dreams if you don’t dedicate yourself to them now, right? You feel proud of yourself for taking the leap; but making ends meet is a constant battle, the stress affects your health and you quite possibly reduce your longterm survival prospects.
Which path do you choose?
This dilemma is not unique to me or others with a health condition; finding purpose in a changing world of work is the disease of a developed, 21st century society. Maybe the thing that steers your career choices is different. Perhaps it’s money worries, a mortgage, family commitments or a desire to see the world that has the biggest influence. And of course, the question of work / life balance is becoming more nuanced for many of us with the uptake of digital technology. It brings its own difficulties, but it also offers more choice and flexibility.
I’m not about writing for the tears. But I wanted people to really feel, for a moment, what it’s like to balance ambition with a faster flowing hourglass. When the existential question of ‘how much time do I have’ has assumptions and estimations already scribbled below it, which you can’t ignore. It’s one of the reasons I switched to a 4 day week last year, having always worked full-time in the past. But I still wonder, what would most employers think of my attempt to have a sustainable career; does it look like lack of drive on the surface?
The idea of pursuing a career or professional success for people with conditions like mine didn’t exist twenty years ago. We are now able to do and see more than ever before.
It’s incredible, but it’s also isolating- it gives you a way of seeing the world that isn’t always shared by the people around you.
The CF Trust has just released updated guidelines on median survival age if you’re interested in reading more. Essentially median survival is calculated by the point at which 50% of people with CF now live to. It doesn’t factor in the hopefully groundbreaking treatment innovations in the pipeline!