On Tuesday, the 19th of November 2019, I downloaded the Crohn’s & Colitis UK, 24 hours #InMyShoes app. The app is designed to help people understand and empathise with people who suffer from Crohn’s or Colitis. It helps those of us with friends, work colleagues, patients, clients or family members with Crohn’s or Colitis to understand the difficulties they experience very often on a daily basis.
On downloading the app users are required to answer a few simple questions and set a start time for their immersive 24 hours #InMyShoes experience. I set my start time for 9am the next morning. I was actually spending a few days with my daughter who was recently diagnosed with Crohn’s disease. We had organised this time together in order to get out and about and fundraise for Crohn’s & Colitis UK. We decided to call it our ‘coast & castles’ tour. The timing was even more perfect because, just a few days before, this wonderful charity celebrated its 40th birthday.
On the morning of my #InMyShoes experience I took our dog for a walk as I do every morning. I set off just before 9am on my usual dog walking route. About halfway round the walk the app sent me my first notification. The app said I was experiencing pain, cramps, and I desperately needed to get to a toilet.….within 3 minutes! There was even a timer on the app so I could see if I made it within the time. I was halfway round my morning dog walk – I realised quickly there was no way I was going to make it. The app let me know I was out of time, and then asked if I had reached a toilet. I didn’t make it. The app informed me I had an accident in public, and then told me the percentage of people with Crohn’s or Colitis who have experienced this very same embarrassing experience in real life because they have been unable to reach a toilet in time. My goodness. I opened the door and saw my daughter and I already felt a new found empathy with her condition. I couldn’t even go on my usual walks with our dog unless I stayed within a quick return distance of home, or another accessible toilet. My daughter said the anxiety I was experiencing was exactly what it feels like. In fact, she says, when she is going through a particular bad flare up she can’t even leave the house, and sometimes can’t even leave the toilet.
We then got ourselves ready to start our planned visits on our ‘coast & castles’ tour. Our first visit of the day was to the lighthouse in Berwick-Upon-Tweed. The lighthouse sits at the end of a long concrete pier. When we parked up a short walk away from the pier I looked at my phone and the #InMyShoes app had sent me a notification reminding me to plan my day and my journeys based on access to toilets. I then realised the lighthouse would be too far away from a toilet if I received another toilet notification. I turned to my daughter and said, ‘if this was real, and I was experiencing a flare up, I would have to cancel this trip, wouldn’t I?’. She said, ‘absolutely’. There was no way she could walk over 20 minutes away from a toilet if she wasn’t currently on her steroids. I felt sad. The great outdoors and the feeling of being far away from hustle and bustle means so much to me. I then realised it was very likely people with Crohn’s and Colitis also enjoy the outdoors and getting into nature the same way as I do, but for them their lives would now need to be significantly altered to be mindful of their condition and its demands upon them. Gosh, this app was really raising my awareness and making me think, and I had only just started my 24 hours!
We completed our walk to the lighthouse and set off for the next visits on our itinerary. The notifications kept coming – ‘remember your meds’, ‘be mindful of your diet’, ‘feeling fatigued’, ‘appointments’, ‘social get togethers’. All these notifications were arriving on my phone randomly, and it was not letting me forget this was ’24 hours #InMyShoes’. People with Crohn’s and Colitis aren’t just going to forget they have the disease, so the app wasn’t going to loosen its grip on my day. The app also reminds you of your pain, energy and mood levels. The emoticons the app uses are very good. The icons got me thinking about not only the physical and social impact of living with Crohn’s and Colitis, but also the psychological impact. If empathy is about understanding and sharing the feelings of other people then this app was working on every level. I was feeling sad, and a bit guilty, that I hadn’t grasped the all encompassing, all consuming, aspects of this disease, especially the phycological impact.
My daughter and I absolutely loved our day together. She was feeling well, and we had great chats about the locations we were visiting, the availability of clean toilets, and about my experience of the 24 hours #InMyShoes app. My daughter got an early night and went to bed about 8.30pm. I felt tired too, but I had a few things I wanted to do before calling it a day. Later that night I got another notification – this time I was told I was in pain and needed painkillers, but I didn’t have any left at home. I would need to go out and buy some, or chose to go without. This got me thinking about what my daughter had said about prescription charges, and not being able to take certain painkillers like ibuprofen. For her the need for medication was constant, and that means paying for each prescribed item, and buying paracetamol over the counter. Before using the app, and talking with my daughter about it, I hadn’t even considered the financial impact of her disease.
The app sent another couple of notifications through the night. I woke, read them, and went back to sleep. I knew someone with Crohn’s or Colitis wouldn’t just be able to go back to sleep if they woke experiencing stomach cramps. My daughter says at times like that she turns to the Crohn’s & Colitis UK online support forums. She says they have been so helpful to her. What an eye opener this 24 hours #InMyShoes app was, in more ways than one.
Please, if you get the chance, try the app for yourself. Download the app and get ready to learn, to understand, to empathise, and to become someone who can help support and raise awareness of inflammatory bowel disease. You will become more aware of how Crohn’s and Colitis can impact upon the physical, social, financial, employment, work, friendships, relationships, and psychological side of people’s lives.
Thank you Crohn’s & Colitis UK for supporting my daughter, and for supporting me on my journey to learn more about how I can support her too.
