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.

 

 

 

 

 

 

Health is everything

Good health is everything. So some people believe.

 

As humans  we structure our needs in that well-known colloquialism of ‘[insert life changing challenge e.g. having no job or experiencing a divorce] …but hey at least I have my health’.

 

I would argue that having no job or experiencing the break up of a lifelong relationship are often far more significant events than experiencing poor health, but as a society good health is so fundamentally cherished and important that the loss of it trumps most other misfortunes.

 

My issue with that idea is not just because it is totally subjective (someone’s poor health could be frequent headaches vs another’s experience of a life-threatening disease). But I also believe that some degree of poor health can be an enormously influential motivation to improve health. A motivation, that many people without an illness and those who take their good health for granted, do not have.

 

So I do believe that health is everything, but perhaps not in the same way that traditional phrase can imply, and I certainly don’t believe the opposite logic that poor health is worse than everything else life throws at you.

 

I’m aware that some aspects of this belief are controversial. Especially when poor health in its various forms kills people. It will probably kill me one day. But as a person with a chronic illness, I passionately believe I have gained things through having CF that I would unlikely have otherwise had.

 

Hopes, dreams, and a perspective that I fear would have passed me by if CF didn’t force me to slow down at times. A wish to be more grateful for the good happenings in life and a slow-burning determination to achieve what I care about, that personally, I think my CF is partially responsible for.

 

Some of the most inspiring, compassionate and intelligent people I have ever met live with poor health. I do not believe it is a coincidence.

 

Health is not a dichotomy.  Not everything that results from poor health is bad, and not all that comes from good health is instantly positive.

No matter how difficult or uncertain life can sometimes be with a lifelong illness, had I lived a life with perfect health I would simply not be me.

An appeal at the eleventh hour

It’s that time of year again.

Oh, you thought I meant the election?

Well, yes. But it’s also around about the time of year I end up in hospital for a 14 day course of intravenous antibiotics to treat the underlying and continuous infection in my lungs.

By Cystic Fibrosis standards this is nothing; it’s a walk in the park. I’m reminded of this every time I meet my fellow patients in hospital.

I was also in hospital during the Brexit vote last year (and yes, I escaped to go back home and vote). It occurred to me that I’ve probably been in hospital for two of the most significant political decisions in a generation.

Despite voting remain, I understand valid political arguments for leaving the EU. But when I woke up in my squeaky hospital bed on June 24th 2016, I felt nothing but shame and sadness.  Every single nurse who came to see me that day was an EU citizen: Spanish, Polish, Portuguese and one Italian. The NHS – the 5th biggest employer in the world – could not survive without them, and they were made to feel unwelcome in this country.

This year, there is a much more complex decision to be made, in the sense that there is no simple YES or NO to tick on a ballot box.

But one issue for me is startlingly straightforward; how much we need our national health service.

Dr Archie Norman was one of the founding members of the Cystic Fibrosis Trust, who passed away earlier this year aged 104. This is what he had to say when discussing the  great milestones of CF treatment in his lifetime. “Last, but not least, was the advent of the National Health Service (NHS) in 1948 – we could prescribe drugs without worrying whether the family could afford them, a matter of immense importance in a persistent long-term disease such as cystic fibrosis.”

There may be many countries in the world that sadly can’t afford a health service such as ours, but we – as the 5th or 9th biggest economy in the world, depending on where you get your statistics- are not one of those countries. And there’s no doubt that the future of the NHS depends on our vote tomorrow.

I wouldn’t be here without it, I am sure. There are 15 million people in the UK classed as having a chronic illness, and for so many of them it is more than a figurative lifeline. We owe so much to the system and the people within it that, despite its flaws, help us live healthier, happier, longer lives.

I won’t argue that any one party has got all the answers at this election. The issues are complex and the solutions expensive, but there is no denying that a continued Tory government will be the end of the NHS.

Please, don’t vote for that. Many of us have a lot to lose.

When the brainfog hits you bad; a specialist’s perspective

I would expect, that even if you aren’t a part of the niche, tight-knit community of CF-related diabetics like me*, you will have experienced brain fog at some point in your professional career.  Or cognitive dysfunction, to give it its scientific name.

Maybe it was a critical moment, in a big meeting as you pitched the incredible, life-changing, oh-no-you-just-forgot-what-it-is, to a potential client or investor. Perhaps it was in the middle of an interview for a coveted job.

Or a more mundane, everyday kind of situation. When you forgot something mid-sentence on a phonecall, or forgot your password, fingers hovering over the keys as you tried to remember which dead pet name now makes up part of your obscure login.

We’ve all had it, often at the worst moments and it can be phenomenally irritating. It is also perhaps, a leveller, that makes even the most high-powered businessperson simply human for a moment.

According to Google, people search for all kinds of queries related to brain fog. We want to know what causes it, what it feels like, what foods make it worse (gluten, apparently), what kind of doctor can ‘treat’ it (now that is one kind of doctor I’d love to see), how long it lasts and more.

But is there anything good about brain fog? Perhaps so.

I am particularly intrigued by the phenomenon and that is because I experience a certain, specialist type of brain fog.  You might know it as diabetic hypoglycemia, or to give it its common name ‘a hypo’.

A hypo is a little different for everyone with diabetes, but let me tell you how it feels for me: the area around my mouth starts to feel a little numb, my lips tingle. I become very aware that I am trying to remember what it normally feels like in my head. I know something has changed. It goes quiet outside as I concentrate on working out what is happening. I always come to the same conclusion; as if by magic, some little stealth pixie must have stepped into my head and replaced my brain with styrofoam. I start to sweat a little, and then the penny drops. A hypo has hit.

At different times depending on how severe the hypo was, I’ve forgotten what I was saying, or doing, and on one or two occasions I’ve forgotten how to spell my name.

I don’t want to trivialise hypoglycemia as it can lead to life-threatening situations when not controlled. But having developed diabetes aged 21 I can remember life before hypos very clearly. And in pursuit of a silver lining in everything; I can say that the aftermath of a hypo can make me feel more alive.

That sudden absence of everything in my head and the instant switch into survival mode a hypo brings is extraordinary. Life becomes very simple and two dimensional. It gives me such an extreme respect for my brain and my body.

When the hypo is over I feel so grateful to have made it through. That absence of feeling is a reminder of how much is there when my body returns to normal.

In much the same way that brain fog is often just a side-effect of the human body going about its complex, messy, incredible business.

So cheers to that.

 

*A not well known, but common complication of Cystic Fibrosis in adults is CF-related diabetes. This is a bit of hybrid beast that is neither type 1 or 2, but bears more resemblance to type 1 and is usually treated with insulin. 

Sorry but I don’t like your air

I got offered a freelance role recently. Successful agency, a big new business win to work on and, it goes without saying, some financial security.

I turned it down.

I could almost hear the recruiter thinking when I told her my decision, “is she crazy or just plain stupid?” Of course, she was nothing but pure professionalism in her response and I thank her for that.

But it wasn’t a straightforward decision. I’d already decided that I should probably take some time out between jobs to give the old breathers a chance to recover and repair. Besides, I had about a month long backlog of hospital appointments to catch up on (sadly the over-burdened NHS hasn’t quite got around to developing holographic technology to enable virtual appointments yet, but here’s hoping.)

In addition, I had made the hard decision to leave my previous agency to pursue a different kind of planning and transition into the sustainability and charity sector, so to not give that a shot first seemed wrong.

But the most pressing reason – that even common sense and a decent pay cheque couldn’t argue with – was where the agency was. Specifically the air around it. It was in an area of of London known for very poor air quality.

I’ve got my own little mind map of London that doesn’t mark the tourist spots or the best lattes in town (I’d pay good money for that map though) but it does tell me where all the areas of persistently bad air quality are, and I do my best to avoid them for long periods of time.

It sounds a little dramatic I know, the effects of breathing poor air are negligible if your exposure is minimal- for everyone that is, CF or not- but the long term effects are quite another thing.

There are lots of things you can’t put a price on and – it’s taken me a long while to accept it – keeping my lung function as good as it possibly could be, definitely falls somewhere in the ballpark of priceless.

Now if someone could only develop a high fashion face mask that doesn’t make you look like a ninja with a side hustle, that’d be peachy.

 

With every percentage

That scrappy bit of paper above is a list of life ambitions I wrote, aged 18. You can see I didn’t exactly hold back.

That scrappy bit of paper is a list of life ambitions  I wrote, aged 18.  I didn’t exactly hold back. In full it reads:

write at least one novel
have a photographic exhibition
speak 5 languages
save someone’s life
work for UN/NATO
sing in a band
visit over 50 countries
publish a historical/political work

learn a form of martial art.

To complete this grandiose document I then apparently scribbled some train times upside down at the bottom. In a similar vein, I didn’t find this note carefully stored for future reflection but by chance, stuffed in an old folder, when I recently moved house.

A few ambitions have changed in the 10 years since then; I never did apply for that NATO job nor have I seriously picked up a camera since I was 19. Ambitions change as we grow older, sometimes for better sometimes not (although me not singing in a band is almost certainly doing the world a favour). But what really hits me looking back on that list now, is the fact I had no limitations. My 18 year old self saw no reason for me to dream smaller or be cautious.

And why should I have been? At 18 I hadn’t had a single IV admission, I didn’t take any regular nebulisers, I hadn’t developed CF related diabetes, I only took about 10 pills a day. I’d just been prescribed my first inhaler. I was not by any stretch, what you would expect from a young adult with CF. I am proud to have dreamed so big.

The thing is, those big dreams may have evolved but they haven’t gone anywhere. I am loath to accept limitations, and the list I’d write aged 28 is just as ambitious as the old one, Cystic Fibrosis or not. But a little life experience has taught me that achieving every dream takes time and compromise.

A thought popped into my head the other day, and I found myself speculating how much lung function I had permanently lost in the last 3 years due to normal stresses like long hours at work and city air. I settled on 6 percent. Lung function fluctuates naturally, mine has gone up and down by 20% in the last year depending on how well and generally fit I am. But there is something called a baseline measurement in lung function, and CF doctors will use it to assess what your best figure is.

After my morbid moment, I mentally slapped myself and went back to mindlessly scrolling through my Facebook feed. But navel-gazing Elly had a point, there’s an opportunity cost in everything we do.  We all need a method of measuring how we spend our time – even if spent percentages of lung function is a little niche – how else will we work towards our goals?

I thought about all the hours that made up those three years, some spent in pursuit of goals big and small, others spent happily pursuing no goal at all. I wouldn’t go back and change them; they’ve led to personal and professional achievements I’m proud of. But I do wish I’d spent more of that 6% in pursuit of the things I really measure myself by. The motivations, beliefs and dreams that inspired that little list in an A5 notebook aged 18.

Which is why, 2 weeks ago, I quit my job. I’m spending the next few weeks working on a writing project I’ve been awarded a grant for.  Beyond that I’m looking for a role in a creative agency where I can work on the kind of social change, charity and sustainability projects that get me really excited.

I’d like to make every percentage count.

…And another thing from this millennial

Technically, aged 25, I am a millennial. Glossing over the fact that this term throws together millions of young people- at a time in your life where a couple of years, for instance, can make the difference between a near affordable degree and one that will land you with a debt worthy of a small country- does it actually help anyone?

I wrote this two years ago (25 seems like a long time ago) but never posted it. Oops.

I hate that word. Technically, aged 25, I am a millennial. Glossing over the fact that this term throws together millions of young people- at a time in your life where a couple of years, for instance, can make the difference between a near affordable degree and one that will land you with a debt worthy of a small country- does it actually help anyone? Consider that the baby boomer generation is often considered to be from 1946-1964. That groups together roughly 70 million people. If that isn’t reductionist, I don’t know what is. Still, sociologists get a kick out of it so we’ll go along with it for now.

I do identify with some of the challenges of the millennial gen and also recognise some of the criticism of our generation I’ve read in many, many an article.

Yes, we were promised it and yes we do want it better than our parents. It’s a natural thing to assume that each generation will build on the last and there’s no shame in it; that’s progress! Not to mention, a consequence of 30 years of pure, unrestricted good ‘ol capitalism. From birth we have been taught to ask for more, more, more. Still, we also need to adapt and be proactive when times change, right? You’ve got to pay your dues no matter what generation club you’re in.

I  worked hard at uni and I enjoyed my degree in International Relations, but graduating in the heart of the recession with a ‘vanilla’ humanities degree and no concrete idea of how to get my dream job -or even what it was- I wasn’t under any illusions. I made myself readily available and put in hours as a bank teller, marketing assistant, recruitment consultant, etc.

In the last year, armed with those skills and a much better understanding of what I like and don’t like, I’ve searched for the kind of career that I think I’d be good at and that I value.

Here’s the thing. I want to work hard, but I also want to work well. And that’s a sentiment shared by many of my peers. If we’re going to dedicate increasing decades of our lives to businesses, in many cases with long hours and no real ‘off switch’, we want it to matter; to be worthwhile. And I sure as hell don’t want to be clocking extra hours at my desk just because it looks good to do so, when I’m actually too tired to work. Just think what else I could be doing with that time (probably sleeping, no judging).

That’s where my CF comes in. A lot of people with CF are simply too ill to work. Many don’t have the luxury of pursuing a career and have to make choices that healthy people never think about. But I’m not. I am able and I wanted my career to be a priority. Obviously I don’t want that to be at the expense of my health, but it will have an impact. That’s just common sense, workplace stress as a cause of illness is an epidemic already; and it doesn’t discriminate, it affects us all.

I am not a religious person, but I do believe there is a lesson to be found in our challenges. I think a lot about where that lesson might be in my CF. The way I see it, If I’m able to have a career, then I better make it count.

It’s not about trying to get on X Factor or being plucked from obscurity to become an internet celebrity because of that funny thing you can do with your ears, but I think everyone has an achievable dream in life.
What other people choose to do and how they make their living is irrelevant. All that really matters is, that you believe what you’re doing and the time you spend doing it, is worth it.

Oh and if you’re not at the point you want to be yet (like 99.9% of millennials) don’t worry, there’s always wine and cats to make you feel better until then.