Last Summer, Crohn's and Colitis UK released a very important app called In My Shoes. The app simulates some of the daily struggles that Crohn's and Colitis patients have. Users are sent push notifications which they have to complete, and the app then shows the user their mood changes and pain levels over the course of 24 hours. I used it in order to help me understand my fiancé and his experiences better. Comments on his experience are included with permission.
I took screenshots of the app at the end of my experience, so you will notice that my pain/energy/mood levels will not change, but they do throughout the experience.
After downloading the app one evening, I went to sleep and awaited my first notification. As soon as I woke up, I was sent the "find a toilet within 3 minutes" task, which showed me the urgent reality of the condition. The "let's get going" task pictured here is about planning journeys and ensuring you know where the nearest toilets are. At the time, I was about to go to a park, and I worried that I wouldn't know that. Crohn's and Colitis state that *87% of people with Crohn's and Colitis plan their journeys based on access to toilets. It's a whole new level of preparation that a lot of us never have to think about.
There have been mornings where Stephen has struggled to go into work due to worrying whether or not he would need to use the bathroom while on the way to the bus stop, or on the bus itself. We have also had experiences where we've been on overground trains together where Stephen has found every single toilet cordoned off, blocked or flooded, which is beyond unhelpful. It was just an app for me when I had to figure out where the nearest toilet in a post office would be, but it's not that simple for the 75% of people with Crohn's or Colitis who have had an accident in public because they couldn't reach a toilet in time.
Another type of task which comes through on the app asks users to consider the amount of pain they're in. The notification asked if I wanted to stop and rest due to the pain or try to carry on with my day. I clicked 'stop to rest', but this question really made me think about what it would be like to have a condition which affected my daily tasks like this, especially as it's near impossible to 'stop and rest' in any typical 9-5 job. Alongside the desire to rest due to stomach pain, fatigue is also an effect of living with Crohn's or Colitis. It can be overwhelming to experience continuing tiredness, lack of energy, or feelings of exhaustion that aren't relieved after rest or sleep. These two symptoms together can really throw off someone's entire day, and it's important that employers pay attention to this if they know an employee has either of these conditions.
One of the "Find a toilet!" tasks made me choose between using an accessible toilet, or feeling too embarrassed and using a regular one, exposing the often unspoken emotional stress of the condition. For this task, even if you do find a toilet, it affects your mood greatly because you feel like you're not in control of your body, and the judgement of 'nasty comments' you could face just from using a toilet that you are within your right to use. More people need to understand that not every disability is visible.
Another task asked me to listen to a voicemail from the IBD nurse. It was about trying a new treatment which could help alleviate some of my symptoms, but I would have to take time off work in order to do so, which is a very tricky decision to make. I made the decision that health comes first, but it's not that easy in real life. Later on, I chose to go out with a friend even though I was tired which raised my mood, but also raised my pain level. The app allows users to understand how many easy decisions that they make such as seeing a friend, or going to work, are much trickier for those with these conditions.
At the beginning of the day, there was a task about taking my medication, which meant that I couldn't eat for a while afterwards, or having breakfast. I chose to take the medication as I could eat later on. The task pictured here was then about delaying dinner as I was experiencing joint pain and needed to rest. These conditions really affect every single one of your daily schedules.
At the end of the experience, the app asks users how they would explain Crohn's or Colitis to other people. This was my response.
World IBD Awareness Day fell on my birthday (December 6th) last year, which is often celebrated by wearing purple. I turned up to my job in a lilac skirt, with lilac glitter on my face. So many of my students told me that it was pretty, and they wanted to know what it was for. They felt bad when they realised that they hadn't heard of these conditions, and I told them not to. It's not their fault for not knowing, but it is our job to educate.
It's time to talk about it. Crohn's and Colitis symptoms are often invisible, which means that many people find it difficult to talk about their conditions. This can lead to them being frequently misunderstood, and thousands of people across the UK (and the world) end up facing these devastating lifelong conditions alone. We can't let that happen any longer.
#ItTakesGuts to talk about Crohn's and Colitis. Will you?
*all statistics and information written in this blog post were found on the In My Shoes app.
Comments