Five Feet Apart: why I need everyone to see it even if you’ve never heard of cystic fibrosis and hate teen dramas

Mar 25 · 13 min read
Five Feet Apart: the most accurate on-screen portrayal of cystic fibrosis yet

There are some spoilers at the end of this piece. There’s a warning before them in the text.

Warning: I also allow the filmmakers some artistic licence, which may be unpopular, but sue me, I’m a filmmaker.

Five Feet Apart is a fantastic film.

Five Feet Apart is a terrible film.

You’ll love Five Feet Apart.

You’ll hate Five Feet Apart.

But what Five Feet Apart provides is the most accurate on-screen portrayal of cystic fibrosis (CF) that I’ve ever seen. Of course there are little things (and one major thing) that don’t quite ring true, but those are few and far between and some may even be explained away by US/UK experiences. What matters to me is the feel of live with CF and the picture it paints.

It’s important to note, however, that no one can represent the views of experiences of everyone with CF — I am always at pains to say I am not ‘people with CF’, I am a person with the condition. It’s also worth noting in this piece I also don’t represent the views of the Cystic Fibrosis Trust (my employer).

Let’s be clear, at its heart, this movie is a soppy teen romance where two teens fall in love amid seemingly insurmountable obstacles. No spoilers here (I’m confident it’s pretty clear in the trailer!), but if don’t like those kinds of films, you won’t like this one.

Nor will people affected by CF like this if you want it to be a film about CF; it’s not. It’s a film about two teens falling in love amid seemingly insurmountable obstacles. And the biggest obstacle is their different personalities… and the life-shortening condition they live with.

There is a lot this movie can teach you about living with CF, and we’ll come to that later, but what it won’t teach you is anything about and what we have to tackle first is —

Cross-infection

Cross-infection is a major and very real thing. Research has shown that potentially lethal bugs can pass between people with CF and travel remarkable distances. In the UK, the guidelines suggest that no two people should ever be in the same room together for fear of causing each other irreparable damage,

In the film, the characters (mostly) abide by the ‘six feet apart’ rule that’s common — although not ubiquitous — in American CF centres. This would never be allowed in the UK.

That inaccuracy, then, is the biggest hurdle for people to get over when watching the film. For people with CF, we have to let it go, which you really should have done if you’re going to the cinema in the first place! For people without a connection to or knowledge of CF, just be aware it’s much more complicated than the conceit of the film makes it.

Regardless, it’s still a good introduction to some of the more difficult elements of a life with CF and the tortuous nature of the condition that has to be faced, dealt with and accepted.

The way the characters walk the halls with masks on to protect themselves and others from bugs, but take them off to speak to each other is also a little jarring; that’s not the point of the masks, but you have to allow some artistic licence because when we watch a film we learn so much from someone’s face. Having a film where the actors are all hidden away behind masks doesn’t make for compelling drama.

And it’s this level of artistic licence that I think will guide most reactions from people with CF, because you either accept that you have to do some things for the sake of the drama and allow yourself to get swept up in it, or you don’t and and every element that’s not quite right will drive you potty. That’s something most people won’t be able to choose, it will just be an immediate reaction they can’t control.

While we’re on the subject of minor niggles, the way they show the coughing up of sputum is a bit too vomit-like to me.

The biggest challenge — especially for a British audience — is knowing how much inaccuracy is the filmmakers being wrong and how much is the American norm. Things that jump out to us may just be differences in our systems.

With all that out of the way, here’s what you’ll learn from watching Five Feet Apart.

The Cystic Fibrosis Team

In the film, Barb plays a critical role that’s a bit of an amalgamation of the multi-disciplinary teams we have here in the UK. She a ward nurse and a nurse specialist, and a little bit of a physio/junior doctor, too.

Regardless, the characters with CF have a special relationship with her that is wholly accurate. All of the specialist CF nurses I’ve had have been incredible people. Deeply caring and understanding, but ready with a swift kick to the rear when you need it.

I’ve known one of the nurse specialists at my hospital in Oxford, Lisa, for more than 18 years now. No visit is the same without seeing her, even if it’s just to say hello. She’s seen me through the best of times and the worst of times and she was the one I first discussed my declining health and road to transplant with — not an easy conversation for anyone.

On the hospital ward in the old Churchill Hospital in Oxford way back in early 2005, I’d just endured a horrible winter of infections, hospitalisations and intravenous antibiotics (where the drugs are pumped into your body through a line in your veins). I’d also been looking at my notes and lung function results and noticed that my peaks and troughs weren’t as far apart as they used to be. Even worse, the intensive treatment for the troughs wasn’t bringing my lung function back up to the level of the previous peaks. I was losing lung function that I wasn’t able to recover.

Lisa came in, as she did every morning I was incarcerated on the ward, for a bit of idle chit chat before her day started ‘properly’¹. I vividly remember saying, “We need to talk about transplant, don’t we?”

That was the start of a near 3-year journey to my new lungs, where she (and the rest of the team) stood solidly beside me, even as I was being introduced to a new team at a new hospital, always making sure I was keeping as well as I could while we waiting for that fateful call.

The second half of Barb in the film (Barb II we’ll call her) for me was and remains my physio, Ali. I’m not sure anyone can understand how important the relationship between a person with CF and their physio is. I know because I’ve had awful physios, good physios, great phyios, and I’ve had Ali. The worst physios come into your room, push you to do your physio and chastise you if you haven’t. The best physios make any session feel like a visit from a friend.

We didn’t have afflovests in my day, and indeed they’re still not usually provided by the NHS in the UK, which meant we had to make do with some form of breathing exercise coupled with ‘physical manipulation’ — either percussion or chest squeezing when you cough and those sorts of things.

This means that when hospitalised you might have two or three 30–60 minute sessions with a physio everyday. That’s a long time to spend with someone. When I was in hospital I would spend more time with Ali than I would with my family.

I was really, really lucky to make such a great friend in Ali because it made physio sessions at least bearable, and sometimes even fun.

The depiction of the relationships between the main characters and Barb felt spot-on to me. Part police officer, part friend, part medical professional, the central importance of that relationship was shown brilliantly and demonstrated a real understanding for what life in the confines of a hospital can be like.

Isolation

When I was a kid, back in the late 80s and early 90s there was no such notion as cross-infection. Everyone thought it best for people with cystic fibrosis to hang out with each other so that we could share our personal experiences and learn that others faced the daily regime of treatments we did, too.

Only in the mid-90’s did we start to discover it wasn’t a good idea. Then we saw it was a bad idea. Then we saw it was a very bad idea. Then we saw that it was potentially fatal. That’s why cross-infection rules are so strict.

That means for people like me we had to work hard to adapt. Rather than hanging out with our mates in hospital, sitting on beds together, sharing war stories and bitching about the junior doctors who didn’t know how to take blood properly, we were now confined to single rooms, closed off from the rest of the ward and unable to even see the other people with CF on the ward. In the beginning, the best we could muster up was sending messages with the ward nurses or physios.

The Internet has been something of a (limited) saviour for people with CF because it suddenly opened up more and more opportunities to connect with each other. We began chatting again, finding new friends online, most commonly in ‘chat rooms’² and web forums, the quaint forms of interaction that seem almost archaic today.

Then social media came along, making it even easier, followed by FaceTime, Skype, WhatsApp etc etc, allowing us to be more connected than we have been in more than 20 years.

But don’t let that fool you.

Speaking from experience from both sides of the coin, nothing but nothing beats being able to sit on a bed, seeing your friend in perfect HD, 3D, human resolution, being able to properly look them in the eye, hug them, whisper about your favourite nurses with them and having friendships just like all the ’normals’ out there in the world.

It’s not just the isolation and separation from your friends with CF that the condition can rob you of, though. Separation from your other circles of friends and family is real, too.

Being in a hospital more than an hour-and-a-half away from my home town means that my friends couldn’t just pop in to see me if they got out of work early or had some time before starting. It made it a mission that’s hard to expect anyone to make. That said, plenty did, and they also did incredible things for me, like joining my then-girlfriend, now-wife one weekend to totally overhaul the second bedroom in our little flat into a study where I could work and earn money as a freelancer from. I didn’t know anything about it until I got home from hospital.

More than just hospital visits, my CF stopped me doing things I would have leapt at doing otherwise. Shortly before I was listed for transplant, a bunch of my best friends went off to Australia for six months, which I was excited to do with them. Thanks to an unplanned, three-month spell in Texas due to a lung that wouldn’t properly inflate (ask me about it another time), I was too unwell to join them. Every email we got from them (this was in the days before WhatsApp and universal WiFi, kids) made me more and more happy for them and sad for me. I ended up reading Bill Bryson’s Down Under to try to at least vicariously experience the same things they did.³

And then there are relationships. Not the generic kind, the intimate kind. Without spoilers, it’s fair to say this comes up a lot in the film and it shows just how hard some of the decision-making can be around what’s fair and what’s not. It’s something I struggled with for a long time.

My destructive cycle consisted of meeting someone, spending time with them, getting to know them better, being open about my condition, getting closer and closer to them and then totally self-destructing and ruining the relationship a couple of months after getting serious about things. I’m not even sure I knew I was doing it, but I systematically pushed people away until they stopped trying to come back.

The only reason I ended up getting married to my wife was because she was perceptive enough to see this and simply wouldn’t accept me pushing her away. She took it, she dealt with it and she kept telling me she wasn’t going anywhere. So eventually I stopped pushing and she helped me realise that it’s not my decision whether someone loves me or not, just as it’s not theirs that I love them. Love is love.

But that still didn’t stop me refusing to propose or get married until after I’d proved my transplant had been successful. I was listed for transplant at 23, got together with my wife at 24 and was eventually transplanted at 25. The last thing I wanted was to leave a 24-year-old widow behind, because it felt too unfair.

There are as many different views on this as there are people with CF— and I know and respect many people who have felt the polar opposite to me (including my wife!) — but the point is that what the film captures brilliantly is that relationships (of any kind) are difficult. The are harder than they otherwise could be. They are more complicated. Because CF is incapable of getting out of the way.

Death & Dying

Still no spoilers, I promise.

While it may not be easy watching, for me it’s entirely true that when you get to Stella and Will’s stage of CF — what’s commonly called “end-stage” — death looms daily. Whether you choose to acknowledge it, talk about it, mope about it or make jokes about it, the Reaper always feels like he’s tap-tap-tapping away at the glass in your window.

The portrayal of how Stella and Will (and Poe) deal with this looming presence is a fantastic demonstration of how different people with CF are, how there’s no one rule for all of us and how we react to any given situation. Just look at all the people who really, truly hate this film, compared to my delight with it! In life, everyone deals with everything differently and there is no one way that’s better than another. There is only way works for you.

While I hope that helps people with CF, what I’d like to say to you, dear reader, is that there is truth in every one of the reactions you’ll see in this film.

What you don’t see is just how interminable waiting for a transplant is. How boring it is. How frustrating it is. How humbling it is. How much of a daily millstone it can become and so how easy it is to fixate on what may come next.

That’s what this film really teaches you: it’s not healthy to think about death so much, but I’ve been thinking about it since I became aware of my own mortality around 5 or 6 years old. When you know your life is likely to be shorter than everyone around you, it’s natural to focus on it and think dark thoughts, and that’s why we have to develop our own coping strategies to cling onto whatever helps us cope with that knowledge.

For those who want to avoid spoilers, this is the time to start scrolling rapidly, where I’ve made clear the spoilers have ended. Because this brings us finally to the most important part when it comes to the portrayal of CF in the film.

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Losing friends

Watching the final months, weeks and days of people you’ve known and loved caused by the same condition that you know will eventually — transplant or not — kill you, is the exquisite torture of a life with cystic fibrosis.

For everyone with CF who gets to know other people from the community and is ‘lucky’ enough to survive long enough you will eventually reach the point where your friends die.

Several years ago, I remember talking to my grandfather about life in his late-80s. He was healthy, still walking miles every day and completing the Telegraph crossword most days, and had plenty of time to enjoy his six grandchildren. He said to me the hardest part was that he now had no friends. He’d watched them all die, been to all of their funerals, and he didn’t know what to do with himself. He was too old, he felt, to make new friends.

That’s exactly where I am now. I feel at 36 the same way he felt at 86. At last count (and yes, I do keep count, because I once forgot one of my friends who had died until I was reminded of them and the pain of that moment still lives with me) I had lost 24 friends and been to around half that number of funerals.

And you better believe that that makes you angry. Angry with the world. Angry with whatever higher power you may believe in. Angry with yourself for being happy that it wasn’t you, and angry for the family that it was their child and not your parents’.

It’s terrifying because it’s another one gone and you know you’ll be there one day. It’s terrifying because you know that one day those pews at the front will be reserved for you wife, your husband, your mum, your dad, that the poems will be read by your friends and your cousins, that everything you see happening now is in your future.

So when you see Stella react as she does to Poe’s death, you better believe that that’s 100% authentic. That the rage, the need for destruction, the need to feel something real is all-consuming, even if only for minutes. It’s all true.

When Stella says, “He was my best friends and I never even hugged him,” you can trust that nearly ever single person with cystic fibrosis has had the same thought, at the same moment, in their own lives.

Because life just isn’t fair. But for people with CF — and all those affected by it — it’s just that little bit more unfair.

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***SPOILERS OVER***

Five Feet Apart might not be 100% accurate when it comes to life with cystic fibrosis, but it is 100% faithful to how it feels to have cystic fibrosis. And that, to me, is what I’d love everyone to experience.


[1] It took me a really long time to recognise that these visits were the ‘proper’ start of her day, and that spending time with everyone on the ward was a critical part of what she did, helping us all feel a little be less lonely.

[2] I was unable to type ‘chat rooms’ without quotation marks because it just feels so wonderfully dated!

[3] I met and became friends with Bill a couple of years later and was delighted to be able to tell him the difference his book had made to me at such a tough time.

Oli Lewington

Written by

Write. Speak. Create. Inspire. I breathe with new lungs as of 2007. Life is more than we ever thought it could be; don’t let it slip away, do something bold.

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