Why we must talk about illness when it isn’t life or death

I want to take a minute to tell you why Professional Sick Girl exists. It’s true, I like to write; it’s my way of connecting with the world around me. But the reason I write about the things I do is to raise the profile of people with chronic illnesses, and the many different lives we lead.

I do that because it matters and because – please excuse my french – there are a fuck ton of us around. An estimated 45 million people living in the UK and the the US combined have a chronic illness. Naturally there is huge variation in severity and symptoms along that scale. Chronic simply means your condition isn’t going away, not that it’s necessarily life-threatening. But a number that big means that a lot of us know what it feels like to balance some element of ill health alongside the multitude of demands from our careers, friends and families, passions and the rest of life.

For me, having Cystic Fibrosis means taking 35 tablets a day, injecting myself with insulin at each mealtime, checking my blood glucose upward of 4 times a day by drawing blood from my finger tips, inhaling nebulised drugs and doing physiotherapy to keep my lungs clear at least once a day. Just to have a shot at feeling ‘normal’ for 24 hours, then I wake up and do it all over again. I balance that with working four days a week, frequent hospital appointments and multiple visits a week to the gym. I like to think that it doesn’t show.

While that may seem like a lot of upkeep to the uninitiated, I am not ‘end stage’. I am (to the best of my doctors knowledge) nowhere close to dying from my condition, in fact I am doing really well. So why do I bother writing about it so much?

The most hard-hitting stories we tend to read on illness are just that; life or death accounts of people who have only a few weeks or months left. Stories that re-shape our perceptions and shock us to the core. But those stories are only one chapter. There is a whole life that takes place before this happens and I fear this is not discussed enough; not in the sense of how illness fits into the rest of our lives. Too often we still regard illness as something that you are either cured from or that kills you, not as something you live with.

I am fiercely keen to shatter any stereotype of CF that I encounter. I have travelled to faraway corners of the world with many medications in tow. I have para-glided off a mountain, raised thousands for charity, climbed the 5 peaks in Cumbria, run a 10k and even been a pole fitness instructor in the past. If all that sounded like a brag, it’s because it was. I know that these things don’t come to mind when people think ‘sick girl’ and I am proud of my achievements.

But you know what? Amongst the honoured company of the chronic illness community my achievements aren’t unusual. Of the first two women I know with CF that come to mind, one is building an impressive portfolio career; working as a CMO of a start up and recently qualified as a personal trainer. The other woman inspired thousands to join the organ donor register in her name, raised over 50 thousand pounds for charity in her lifetime and skydived before she turned 20.

When I think beyond CF, I remember the woman with diabetes-induced blindness who climbs literal mountains and has cycled through Europe. I have a friend with EDS who spends their days in physical pain – the extent of which would probably draw many of us to tears – but she still has a smile on her face and time to listen to my worries whenever we meet. While I draw attention to these obviously extraordinary people, there are so many others living with illness just starting out with grand schemes and dreams who I know have lifetimes of wisdom, compassion and drive to share with the world.

And while I blow our collective trumpet, I have one vital caveat to make. I don’t equate being ill with a constant need to prove oneself. This isn’t about people with conditions being made to work or doing more than is safe or possible for them. For some people with serious illness the strength it takes to get out of bed on a morning is all that’s available on a given day.

But there are a growing number of people with health conditions living in a way that doesn’t ‘fit’ the stereotype of sickness, thanks to our medically-advanced and technologically-enabled societies. There has to be another way for such people to thrive; a society where we don’t squander the enormous potential of the thousands of people who have more to offer than they are currently able to give.

Professional Sick Girl is my contribution to a different way of thinking. That’s why I never write about just illness. I will never dedicate a whole post to the minutiae of describing my symptoms; how I’m feeling or what treatment I’m on. There are many great places for you to read that kind of thing if you want to, but it’s not my style nor do I particularly expect you to care.

I might write about living with illness and finding your dream career, hypos and business meetings, travelling with medical supplies. Or I might write about a topic with the hope that people without an illness can relate to it, that you can connect it back to something in your own life.

I’ll keep writing about these things, for as long as there are boys and girls growing up with illness scared of how they’re going to fit in at school, young adults worried about telling a date about their condition for fear of being undesirable and young professionals worried about discussing their health at work in case they are passed over for opportunities and promotions.

If any of this sounds like something you’d like to read more of, now is the time to subscribe. There are some exciting things in the pipeline and I’d love to share them with you.

 

2 thoughts on “Why we must talk about illness when it isn’t life or death

  1. So nice to meet you yesterday at the Wellcome, Elly and thank you for introducing me to this blog! Spent half my Sunday on it; never read anything that resonates with me so well! 🙂 I really Look forward to chatting with you again soon!

  2. michaelrushton May 28, 2018 — 12:30 am

    Glad to see you’re doing well. 🙂

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