My search for happier, healthier work on CFNewsToday

I’ve recently become a columnist for CFNewsToday. I publish weekly on the topic of working and professional life with Cystic Fibrosis. I highly recommend you head over there to see the most up-to-date posts, but from time to time I will share them here.

In the not-too-distant past, I was a wide-eyed, coffee-swilling exec with a penchant for checked trousers. I worked in a trendy digital agency in London. (Trendy enough to have the company name hoisted above reception in bright, neon signage, you ask? Yes, that trendy.)

Throughout my 20s, I prided myself on the number of hours I worked and the amount I coped with in terms of my CF and working life. With a background in advertising, I internalized the mindset of “more is always better” when it came to work.

I found some balance in the last 18 months as I cut my hours slightly and prioritized staying fit and avoiding smoky pubs (secondhand smoke of course, as cigarettes are the devil). But I often wondered how long my lifestyle would be sustainable. At what age would the hours I put in be repaid with an irreversible decline in lung function?

Then, last summer, I was hit with a hat-trick of self-realizing moments. First came a move to a new city, Cambridge, away from the bright lights and heavy air of London. Then, a milestone birthday: I turned 30. And finally, I found myself searching for a new job, all in the space of a fortnight.

My partner continued to commute to London every day and did an excellent impression of a productive, upstanding member of society. Meanwhile, I wallowed. Often in pajamas. I spent hours trawling LinkedIn. Hours working through my presumptions, beliefs, and self-doubt about what I should be doing, and what I thought I could do. And finally, what I wanted to do.

I knew that I wanted to work in a different way. I wanted to build a career that allowed me flexibility, a short or nonexistent commute, and if I’m honest, fewer hours but not significantly less money. I wanted a career that didn’t make me sick so often from stress, tiredness, and lack of movement. And I didn’t want to face years of declining health before I’d at least tried to make a living doing what I love: writing.

Dear reader, I almost certainly won’t have all the answers; indeed, I cannot advise, only share experiences and existing guidance. Throughout this column, I will faithfully share with you episodes of my past working life — from the time I self-administered IVs in a meeting with my managing director in a perhaps misguided attempt to raise awareness of CF, to the lessons I learn from freelancing in coming months.

I will report back on how my sanity and conversation skills are holding up while I rely on the companionship of my two cats during the long hours working from home. Don’t let the fluffers fool you, they are cruel taskmasters.

I want to go beyond my personal experience by speaking to others with CF to provide a realistic picture of what the CF community does for work. I also want to investigate how common entrepreneurship and self-employment are among us, to question how each of us find meaning in our careers, to highlight the dedication many CFers show simply by turning up every day, and to look at practical issues like calling in sick and avoiding germs in the office. I also want to speak to people who have spent time working on interesting voluntary projects, such as blogging on an underreported topic, creating art, or conducting online advocacy.

Many of us cannot work or cannot work right now. Please always remember that our worth is never measured by the work we do. Our value to society can never be represented in “net payments,” despite the way social security and welfare departments can sometimes make us feel. And yet, more people with CF are in some form of work than ever before. It’s exciting! I think it’s time to have these conversations, about our futures and our ambitions. It’s time to address the challenges and to question how each of us can find work that works for us.

Re-published from cysticfibrosisnewstoday.com with permission. View the original column here.

Tinder dates from a West London hospital

And now for something a little different. I’m writing a book, yup a real actual book with all the words in it. The working title is: Professional Sick Girl – The untold and unexpected lessons of a lifelong illness.

Below is a short extract that explores some of the realities of luurve with a health condition. Love it or hate it? Let me know.

Excerpt from Part Two: Love, chapter one. ‘Tinder dates from a West London hospital: Tales of dating with chronic illness.’

It takes a special kind of person to support us through our most vulnerable moments and  never use them against us. Lucy, a young woman in her 20s living with Rheumatoid Arthritis and Coeliac disease, should know.

During serious arthritic flares her ex would cut up every mouthful on her plate, as they enjoyed a romantic dinner date. Sometimes, with no ulterior motive, he helped her shower when she was so stiff she couldn’t lift her arms beyond her sides.

Anyone would be lucky to have such a partner.

Now recently single, Lucy finds it hard to imagine she could find someone like that again. A familiar feeling for many people after a break up.

Dating is an exercise in constant vulnerability. A conveyor belt of moments where we strip – sometimes physically, others metaphorically – in front of a stranger and wait for judgement. Most of us have something we’d like to airbrush away during these moments; I know I have.

When I was at University I developed a fear of intimacy. Not an unusual time to do so, but I had unusual reasons. Some girls won’t stay the night because they don’t want to look less-than-perfect the next morning, I used to avoid it because I didn’t want to spend the night choking silently alongside my date.

It was one night in my first term that started this fear. I can remember the sensation vividly. Pressing every inch of my tense body up against the cool, calming wall on one side of the bed as the boy I shared it with slept obliviously on the other. I could barely breathe; it felt like my lungs were closing in on themselves.

I was starting to panic. But I tried so hard to keep it in because I knew that if I started coughing, I wouldn’t stop for hours. In the end I spent the rest of the night in the tiny, grimy shower cubicle, coughing so hard I vomited several times into the toilet. If he heard me, he never said anything. Then again, he probably would have assumed I’d had one too many Smirnoff Ices.

I didn’t know it at the time, but my lung function had reached its lowest ever point. In a hospital test a month later I would manage to expel 45% of the predicted capacity of air from my lungs in the first second of exhalation, a measure known as FEV1.

Perhaps in the back of my mind I knew something was wrong, but I was trying so hard to be a normal student. On the outside I looked like a healthy, happy young woman. I was positively coy at disguising my coughing fits, expert at doubling back to ‘fetch something’ on a bad day before tackling flights of stairs with coursemates.

Cystic Fibrosis is a progressive disease and so I couldn’t reconcile my struggling health with my perception of self. As a child I’d been healthy and almost never saw the inside of a hospital. It took time to acknowledge the changes that CF was causing in my life and as a 19 year old woman I was not ready to accept them, let alone share them with prospective partners.

Fast forward to London, May 2014 and I tried a wildly different approach to dating. The spirit of Spring, new beginnings and Tinder was in the air. There was only one problem, I was in hospital.

I know! How could I possibly be sick enough to be in hospital yet well enough to date? Chronic illness is an unpredictable master. I had been in hospital receiving intravenous antibiotics for a chest infection for a week already and had another still to go. On this occasion my body responded well to the drugs and I was feeling ready to go home, but to stop the the treatment early could have resulted in a relapse. That didn’t stop the cabin fever! Scrolling through Tinder in the early hours of the morning due to drug-induced insomnia did help, however.

Meet J, from South London, an actor. We kept it casual for our first date and met in a café. I wore my cutest jumpsuit, black sandals and accessorised with my intravenous access device, a long line, suggestively peeking out of my arm and wrapped in a bandage.

He had beautiful brown skin, dimples and spoke eloquently about writing, acting and his multicultural upbringing. It was going so well.

I felt comfortable enough to bring up the bandage on my arm. I explained my condition and I told him I never let it hold me back. I spoke confidently and without apology but I noticed his body language started to shift and he drew his hand back across the table. The moment I revealed the tiny plastic tubing in my arm, his face blanched. Half disgust, half fear.

He told me, in a brief message after the date, that his ‘sensitive nature’ made it difficult for him to talk about illness so publicly. I messaged him back to reassure him, but I never got a response. I guess I’ll never know whether the tear that glistened in one eye as I told him was real, or if he was a better actor than he seemed. 

At age 25 I was starting to learn my most valuable lesson in love; rejection can be a blessing. Sometimes illness is a special kind of Litmus test. It’s futile trying to take up a role in someone’s life if they don’t have a space for you, whatever the reasons.

Lucy, now fresh on the dating scene, puts it perfectly, “I want to be up front with my Arthritis; if they wanna run away it can be over and done with quickly.”

In her opinion Coeliac is easier to deal with, but on occasion, it can be the canary in the coal mine. “Some guys act like it’s such an effort to cook a nice meal with substituted pasta. When I meet men like that I don’t bother pursuing it. If they can’t be bothered with cooking new things, how the hell will they cope with my bad days when I need help getting into the shower?!”

 

Photo by Marcelo Leal on Unsplash

 

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.

 

How to plan a career when you’re predicted to die in 10 years

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!

The Jekyll and Hyde life

Hooo boy. Illness. It is quite the ice breaker at a party. When I meet a new person I like to tell them at least once that I have a life- threatening lung condition. Sometimes I like to chat about the four different types of broad-spectrum potent antibiotics I’m on at any one time. If I feel like I’ve really gelled with a person I might tell them all about the inner-workings of my diabetic pancreas, too.

Wait, come back! Where are you going? I was just getting started.

And there you have it; how not to talk to people about your health in public! How people with an illness identify with their health is a complex and ever changing thing – as with any aspect of our identity. Some people refuse to acknowledge their condition in all but the most private circumstances. Others proudly self-identify as disabled or ‘ill’, outside of any necessary legal context.

So how do you build a healthy relationship between your illness and your identity?

It’s a never-ending balancing act. 2017 for me, was the unofficial year of openness. I discussed my illness with more people in more contexts, more often. It was really weird sometimes. Instead of glossing over the hundreds of tiny moments in every day when I’m reminded of my condition, I actually voiced them out loud. While this didn’t always come naturally (and is not always appropriate or important) I was doing it on purpose.

I believe strongly that those with a health condition should feel able to tell someone about it and to say when or how they need help. I knew too many people with a chronic illness who were afraid to speak out; afraid of applying for a job because of it in some cases, afraid of losing the job they already had in others.

Talking about my condition so openly was my weapon against this unspoken taboo around health that exists in our culture. Don’t even get me started on the damaging political and social ramifications of this (see: every comment and subsequent policy the Conservatives have introduced on illness and disability in Britain thus far).

But believing something in theory is not quite the same as living it. It is easy to get caught up wondering about how differently people perceive me, based on whether they know about my CF or not. Just because I write under a provocatively-titled blog doesn’t mean I actually identify as ‘sick’ or ‘ill’ at all.

Professional Sick Girl was never meant to be a typical illness blog. This is a place where I experiment with talking about illness in different ways.

Whether it is talking about hypoglycaemia as just another instance of brain fog in a meeting, or using Disney princesses to bring some humour to the humdrum reality of treatment, I want people to feel that illness is a subject they can read about. Maybe even one they talk to people about in real life.

As a nation, we are not well. Whether that comes down to lifestyle-related disease, inherited illness, poor mental health, or all of the above, we continue to put a mask on it. Constantly unsure of how to manage the uncomfortable relationship between our health and our identity. In this sense, we are all living a Jekyll and Hyde life; some of us are just closer to acknowledging it than others.

A false start

The truth is I don’t particularly like to talk about it when I’m having a hard time. Actually, let me rephrase that, I don’t like to share on the internet with total strangers when I’m too whacked to get out of bed for a week and look like I’m still recovering from an epic NYE three weeks later (when on the night itself I was in bed before midnight, with not even the power of prosecco enough to prevent me from coughing up half a lung).

Yes, I sometimes dislike that level of oversharing. Honestly I’ve never wanted to talk about my health less than I do right now. I entered December 2017 feeling happy and positive, with plans for the year ahead bubbling away in my mind. Yet due to ill health, I arrived in 2018 in considerably less style than I had intended and have been really struggling to pick myself up again since.

Part of the reason Professional Sick Girl exists is to share the untold side of illness. I want to talk about aspects of illness in a way we don’t often hear and find ways to make them applicable to people who don’t experience it in their day to day lives.

So when I’m fresh out of positive, and chalk a day up as ‘successful’ when it takes me less than an hour to get out of bed- it’s hard to know how to talk about this in a way that achievers and happy ‘morning people’ can possibly relate to.

And then I remembered something. It’s January! The month of misery, dampened ambitions and soggy leftovers.

Surely I am not the only one out there who has not started 2018 as intended? Everyone starts out with lofty goals on 1st of Jan and yet a solid 50% (unverified stats FTW) land flat on our faces come February.

It occurred to me recently, that there are times the list of expectations I place on myself feels more exhaustive than the list of medications I take. While that may not be the correct analogy for all of us, we all go through times where our mismatched expectations of ourselves cause more harm than good. There are few times of year this reality feels more stark than during January.

Perhaps this is why I’ve never been one to make new year’s resolutions. I like the sentiment sure, and I’m all for people channelling their ambitions healthily. But we would also do well to realise when external circumstances may dictate the success of any narrowly defined resolutions, the resulting failure of which only makes us feel more deflated than when we started. And I admit, it is hard to make resolutions when you can’t assume you will be in a good enough state of health to see them through in 12 months time.

I’ve decided to try this year however; I have just one resolution for 2018 and it is to keep going.

When I feel so rough that I can’t remember ever feeling like an ambitious career woman, I will simply keep reminding myself that I am, until it feels real again. When a chest exacerbation has knocked me for six – and I can’t remember what a successful push up looks like, let alone the interior of the gym – I will trust that I used to be good at them and I can be again.

When I feel so lost – my confidence shook from a period of illness – that I can’t even fathom why I have such big dreams, I will remember all the dreams in my life I have already made reality. I may not know when, but I do I know there will be more to come.

Travelling carefree and with a carry-on full of drugs

Previously I’ve written about working with a condition, amongst other aspects of life but I haven’t shared any travel stories. This is the first post in a series on travelling with chronic illness.

Fresh out of school 10 years ago, I travelled to Cuba for two months to learn Spanish and fail at Salsa. I did both of these tasks semi-successfully, while also navigating the hiccups that crop up when you run out of antibiotics in Fidel’s empire (el jefe was still technically in power when I visited).

Travelling was simpler for me then, in the medical sense, as I didn’t take many of the medications I do now. In addition to Cuba, I spent 3 months travelling around India, 6 weeks in Bosnia, and later, 3 months in South Korea. Even given my limited medication needs and excellent health at the time, I later found out that some of my wider family believed my mum was irresponsible for letting me travel.

Last month as I travelled to Vietnam for the first time, I reflected on how much more anxious travelling now makes me. As I got on the plane I fretted about how to keep my refrigerated medications cold, my nebuliser equipment sterile, what to do if any of my drugs got confiscated or lost (even though I had them all on my carry on, of course) and whether the lower oxygen in the cabin would prove a problem for the first time.

When we arrived I worried whether I’d get sick from the pollution in Ho Chi Minh City (I didn’t, because I made like the locals and sported a sexy tartan pink face mask) I worried whether I’d have hypos all the time, and generally found reason to worry about a lot of things.

I found it interesting, because I’d always been a confident traveller. But I think, in some way, I’ve become much braver than I used to be. In the last two years, I’ve paraglided off a mountain in Turkey despite a fear of heights. I’ve climbed 5 mountains in the Lake District despite my fear of hypoglycaemia when I exercise. I’ve screamed all the way down a 900m zipwire across a Thai jungle (I actually got more scared abseiling down a very tiny 30m drop, but that’s another story). All of these things, I would never have dreamt of doing when I was younger and I had less reason to be afraid.

And so my message is this; if you have a chronic condition or something in your life that holds you back more than you’d like,  please know that adventures are still possible.

Exercise caution and understand your limits for sure. I no longer aspire to be a war correspondent as I briefly did when I was 18; no one wants a girl with a severe dust cough and a reliance on all the pills in sensitive conflict zones, am I right?

But on a serious note, know that your difficulties don’t mean all adventures are closed to you. Some may not be possible, some may take a lot of planning and a whole lot more patience, but you will likely appreciate them so much more. It’s dreaming of those adventures – however large or small-  that make it all worthwhile.

 

The Tale of the CF Cinderella

Do you ever just stop and take a minute, to think about which Disney heroine you might have been in another life?

Like many a millennial I often seek to take inspiration from Walt and shoehorn my experiences into the relevant cartoon princess. Say, If I were to sum up the experience of having Cystic Fibrosis and Cystic Fibrosis related Diabetes into the form of a Disney protagonist? Cinderella would be my girl.

When you start to look into it, the resemblance is there. Sure, I’m short on ballgowns, but when the clock strikes 1pm everyday I must rush from the office to the nearest Pret for a healthy serving of melted cheese, avocado and precociously arranged flatbread lest I risk an attack of hypoglycaemia. Or I might just be hangry, to be fair.

Woe the girl (or gent) with CF who does not pay attention to the rhythms of a rapid metabolism and an unreliable pancreas.

And what is the optimum hour for a CF Cinderella to leave the ball on an evening, or more likely, the pub? 10pm actually; only midnight on very special occasions.

Beyond the chimes of Big Ben at the twenty second hour, there is very little benefit to be gained from staying out; the ugly sisters of nebulising and physiotherapy are waiting for me at home.

To my mother and my boyfriend; I admit to not being the most punctual person I know. There I said it. While there is no excuse for tardiness, I suppose younger me would say that she didn’t see the time and her imagination had run away with her, or there was something exceedingly trivial that she just had to do, only it didn’t feel trivial at the time to a girl who lived inside her own head.

But there is one type of timely obligation that I have slowly learnt to respect, one which trumps all others. Those times where I simply have to be somewhere else, ‘lest I miss nightly treatment. Or when I really do have to make it to a last minute check up at the hospital. I guess some strikes of the clock are simply more important than others; we all have our own obligations, these are merely my own.

So if you ever see me sneaking off early from after-work drinks without saying goodbye, please rest assured that I’m not being rude. I probably do like you; I just have drugs to do.

Sweet love

It was late.

The lights were dimmed.

I stared at him. He stared right back.

It was always special, but something felt different tonight.

He leaned in and I felt my hands get clammy.

Up close his eyes were huge.

The blood was rushing to my head, all thoughts gone.

The butterflies were dancing.

Was this it;

The way true love showed?

My heart was racing, a din in my ears.

But alas no,

I had merely mistaken love

for a hypo.

 

 

Photo by Laura Ockel on Unsplash.

A lesson in vulnerability

Or, that time I mentioned my wheezy-hamster-lungs in an interview.

Unsurprisingly having a life-shortening illness can make you feel a tad vulnerable at times. It can also make you feel like a superhero when you defy the odds.

But there’s one context that has always made me feel more vulnerable about having Cystic Fibrosis than any other.

A job interview.

The normal tension, adrenaline and uncertainty of an interview is shadowed by one little voice in the back of my head asking ‘but when do I tell them?’

An admission that you’re essentially a walking pharmacy, reliant on multiple medications to survive, need a dedicated diary to keep up with doctor appointments and will likely have to be hospitalised for a week or two a year, is not traditionally  viewed as a strength in the professional world.

And yet, revealing my CF made me feel stronger and more assertive than perhaps any other single statement I made during a recent interview.

And I got the job.

In fact, I have now discussed CF in three job interviews this year. Two for freelance positions and one permanent. I was offered all three roles.

I don’t share this as an example for other people with chronic illness to emulate. I am in no position to recommend anything, and I am well aware of the serious emotional and financial risks of disclosing an illness in a professional context.

All I can share is my own experience. Five years ago I would never have been so open about my CF. I even let CF be the reason I didn’t apply for several opportunities; much as I regret it now, I accept it’s what I was comfortable with back then.

I’ve always been frank with people who know me and prefer to joke about life with CF than to not talk about it at all.  It is an attitude that I have tried to translate to my professional life too.

So over the course of this year I have – unconsciously at first – dared myself to be more open than I ever have about this strange life I live as a medical grade drugs mule. CF has a curious ability to scare you and make you brave simultaneously, and I relish the lessons it’s taught me.

A few months ago I turned up on the first day of a freelance job with a 10 inch plastic cannula tube sticking out my arm, as I finished the last couple of days of an intravenous antibiotics course.

I was recovered and able to do the work, but in previous years I would have fretted and worried about this unchangeable fact of life. No doubt making myself feel worse in the process and less focused on the job at hand.

Instead by being honest, matter-of-fact and hopefully professional about it, it became a non-event. For me at least, I never did check whether my line manager was squeamish.

That wellworn adage, misattributed to Marilyn Monroe on many an insta meme, ‘if you can’t handle me at my worst, you don’t deserve me at my best’ starts to ring true. But only partially, as I don’t think people with a chronic condition should believe it represents the worst of them, far from it!

Whether the issue at hand is an illness or any other type of imperfect truth; it is a truth. And as I have learnt, it’s one that can be an asset, a vulnerability and a triviality all at the same time.

So take me as I am: war-chest of antibiotics included.