What is it like to live with a disability that isn’t visible?
I have chosen to use the ‘In My Shoes: 24 Hours with Crohn’s & Colitis’ app to experience the simulation of the challenges faced. This will help to develop a better understanding of our client’s condition and document how it would affect my daily routine.
Tuesday 8th September
It’s a usual working day for me waking up at 7:00 am, making my morning coffee, a shower, and ready to leave by 8:00 am for my drive to work. My phone buzzes to tell me I need to find a toilet shortly but I’m already 15 minutes into my 45-minute commute to the office and there’s traffic ahead, so I don’t have time to find a toilet. I park up, I am experiencing severe stomach cramps and I have had an accident on my way to work. I begin to think about how embarrassed I would feel, and would this happen every day? How would I cope with this mentally? What would I say to my employer about having to go home and change?
75% of people with Crohn’s or Colitis have had an accident in public because they couldn’t reach a toilet in time.
Luckily, I work in an environment with a toilet easily accessible but within minutes of starting my work, I have severe stomach cramps and need to use a toilet within 4 minutes. This time I manage to get there but bump into my colleague rushing to get there. It’s a huge relief but the urgency enables me to sympathise with someone in this situation and how the worry of finding a toilet in different situations must cause a huge amount of stress.
87% of people with Crohn’s and Colitis plan their journeys based on access to toilets.
Throughout the day I’m being alerted that my mood is going down due to pain and tiredness. I’m having to remember to take an iron tablet to help with my iron deficiency due to my condition. It’s not easy trying to remember medication and especially after the kind of morning I’ve had because of my condition.
As the afternoon progresses, I go into a meeting with my manager but I then receive a missed call from my IBD nurse and a voicemail explaining how I need to go into the hospital for routine blood tests because of my medication which means more time off work. I will now need to have a conversation with my employer around taking time off work.
The working day comes to an end but on my commute home I have to stop and pull into a petrol station as I’m being alerted that I need to use the toilet but I have to ask the shop assistant to unlock it and explain my situation. I feel embarrassed about having to provide such personal information but unfortunately, as I wasn’t purchasing anything he needed to ask. It’s not an ideal situation to be in and makes me angry that I had to validate why I need to desperately use the toilet.
Finally, I arrive home and would usually go to the gym but after my drive home taking longer than usual, I have missed my allotted time. I make my dinner which is chicken and rice as I shouldn’t be eating high fibre foods. I then settle down for the evening to relax but use the toilet several times as the stress of the day has affected me. I take a bath to help with the cramps before getting into bed but throughout the night I’m woken up with the urge of needing the toilet. I have broken sleep throughout the night and walk into the edge of the bed causing a nasty bruise as I didn’t want to turn the light on which could wake up my partner.
Overall, the experience of using ‘In My Shoes: 24 hours with Crohn’s or Colitis‘ opened my eyes to the daily stresses people with the condition go through. It was extremely thought-provoking and enabled me to provide a new level of empathy for someone with the condition. A fantastic tool that is easy to use, and makes you think about what it’s like for our clients.