In My Shoes: How Do You Understand a Life You Haven’t Lived?
My phone kept interrupting me.
I was trying to get on with my day, but another notification had arrived. Then another.
Something needed my attention. Plans had to change. I had to think about where the nearest toilet was. My normal working day was being repeatedly disrupted.
And that was rather the point.
I wasn’t experiencing Crohn’s or Colitis.
I wasn’t in pain. I wasn’t dealing with the physical urgency, fatigue, uncertainty or anxiety that can accompany these conditions.
I was using an app.
But for 24 hours, In My Shoes was attempting to make something normally invisible a little harder for me to ignore.
A Different Kind of Brief
We became involved in the project through our friends at Mearns & Pike, working with Crohn’s & Colitis UK on two films about In My Shoes: 24 Hours with Crohn’s or Colitis.
The app had been developed through a partnership between Crohn’s & Colitis UK and pharmaceutical company Takeda UK.
Its purpose was unusual.
Rather than simply giving people information about Crohn’s and Colitis, the app created a 24-hour simulation of some of the challenges the conditions can bring.
Notifications and tasks appeared throughout the day. Energy levels changed. Decisions about food, medication, work and access to toilets became part of the experience.
Of course, it couldn’t recreate the condition itself.
Crohn’s and Colitis affect different people in different ways, and no simulation can reproduce somebody else’s physical or emotional experience.
What the app could do was interrupt your world for a while.
That distinction became important to me.
Before We Filmed, I Tried It Myself
I downloaded In My Shoes before filming.
At first, I suppose I approached it as research. I wanted to understand what we were going to be making films about.
Then it started getting in the way.
My phone wanted my attention when I was trying to do something else. I had to respond to situations I hadn’t planned for. My working day started being dictated, in small ways, by something outside my control.
I found it frustrating.
But I could stop.
That was the uncomfortable part.
After 24 hours I could put my phone down and return to normal. There was no physical consequence to anything I’d experienced.
For someone living with Crohn’s or Colitis, there isn’t an “end simulation” button.
That stayed with me.
Natalie-Amber and Tamara
One of the films introduced us to Natalie-Amber, who lives with Crohn’s Disease.
Natalie-Amber had been diagnosed following emergency surgery when she was young. Her condition had affected both her personal and professional life.
Her friend Tamara used In My Shoes.
That relationship mattered.
The film wasn’t simply about whether Tamara thought an app was clever or effective. It was about one person trying to understand something that someone she cared about was living with every day.
Crohn’s & Colitis UK published Natalie-Amber’s own account of the project at the time. She described wanting people close to her to gain some understanding of how much planning and adjustment can sit behind an apparently ordinary day.
[EMBED TAMARA & NATALIE-AMBER FILM]
Watching someone you care about deal with a long-term condition is one thing.
Being confronted, even artificially, with some of the decisions that condition can impose is something different.
It doesn’t mean you suddenly know what Crohn’s feels like.
It means you may start asking better questions.
Ben and Colin
Our second film followed Colin and his friend Ben.
Ben is a bodybuilder.
Looking at him, you might make all sorts of assumptions about his health. He’s physically imposing, trains hard and looks extraordinarily fit.
He also lives with Crohn’s.
That contrast gets to another important part of this project.
Not everything somebody is dealing with is visible.
A photograph can’t necessarily tell you.
Meeting someone briefly won’t necessarily tell you.
And sometimes even people who know somebody well don’t fully appreciate how much management is happening quietly in the background.
Colin’s experience of the app gave us another way into that conversation.
[EMBED COLIN & BEN FILM]
Again, the film wasn’t trying to suggest that Colin now knew what it was like to have Crohn’s.
He didn’t.
But he had been given a different perspective on his friend’s day.
Sometimes that’s where understanding starts.
How Do You Communicate Something Someone Else Cannot Experience?
Looking back, this is what interests me most about the project.
We communicate facts all the time.
We can explain symptoms.
We can publish statistics.
We can describe treatments.
All of that matters.
But lived experience is harder.
How do you explain what it’s like to plan a journey around toilet access?
Or have your energy disappear halfway through a day?
Or cancel something you wanted to attend?
Or deal with people making assumptions because, from the outside, you look fine?
There are limits to how completely one person can understand another person’s experience.
Perhaps acknowledging that is important too.
The aim isn’t necessarily to say:
“Now I know exactly how you feel.”
Perhaps a better outcome is:
“I hadn’t realised how much of this I wasn’t seeing.”
There’s humility in that difference.
The Films Had a Different Job
Our job wasn’t to make Crohn’s or Colitis dramatic.
The reality already mattered.
Nor did we need to turn the app into the hero of the story.
The technology was simply a way into a conversation between people.
Natalie-Amber and Tamara.
Ben and Colin.
One person living with something and another person trying to understand a little more of it.
That’s why the two films still mean something to me.
They weren’t really explaining an app.
They were exploring what happens when somebody makes the effort to look at another person’s life from somewhere other than their own point of view.
Something I Took Away From It
I’ve made quite a few films over the years involving health, illness and experiences that aren’t always visible from the outside.
One of the things those projects have taught me is to be careful about believing that understanding the medical facts means understanding the person.
They’re not the same thing.
In My Shoes couldn’t give me Crohn’s or Colitis for 24 hours.
And I wouldn’t claim that it allowed me to understand fully what either condition feels like.
What it did was interrupt my day enough to make me think differently about somebody else’s.
That idea — that we often know far less about what somebody else is carrying than we imagine — is something I’ve encountered in very different circumstances too. I wrote about one of those experiences in my own story about men’s mental health.
That’s a much smaller claim than saying I’d somehow experienced Crohn’s or Colitis myself.
I think it’s also a more meaningful one.
Because sometimes the beginning of empathy isn’t believing you’ve walked in somebody else’s shoes.
It’s recognising that you haven’t.
About the In My Shoes project
In My Shoes: 24 Hours with Crohn’s or Colitis was developed through a partnership between Crohn’s & Colitis UK and Takeda UK. The programme was developed with and partially funded by Takeda UK, with Mearns & Pike among the organisations credited by Crohn’s & Colitis UK for helping bring the project to life. In 2020, In My Shoes received three Communiqué Awards, including Excellence in Patient Programmes and the Porterhouse Medical Award for Innovation in Healthcare.
The app’s availability and support have changed since these films were made. Crohn’s & Colitis UK currently lists In My Shoes as “Under Review”, so readers looking for current information should check the charity’s current mobile apps guidance rather than relying on the original download information from this project.