- An experiment involving the incarnation of a person suffering from inflammatory bowel diseases for one day? All I need to do is download the application and I can participate in it? Sure, I'd love to try! - I told my colleague from the editorial office when she asked if I would take up the challenge of "In Their Shoes" with her.
"In their shoes" is literally a feeling as if you are wearing someone's shoes - some will be just right, but they can also hurt, be too big. And although in Polish we do not say "I wore your shoes for one day", but simply "I felt like I was in your shoes", after 10 hours spent as a person suffering from inflammatory bowel disease, I can tell you one thing - these shoes they hurt a lot …
Author: TAKEDA
The experiment "In Their Shoes" lasted one day - from 10.00 to 20.00 The application on the phone set tasks - challenges faced by patients with IBD. Importantly, an experiment was developed in cooperation with them. Doctors, nurses, pharmacists and journalists took part in it.
"But what do sick people need from me?"
Excited about the tasks ahead, we told everyone about the application. What were their impressions? We work on a website dedicated to he alth, so every day we write and read about various diseases, their symptoms, and difficult treatment - so we received understanding from the editorial staff. It was a bit different with friends from outside the he alth circle. "Okay, stop talking about this diarrhea all the time" - heard her friend.
However, one colleague, without any malice, wanting to know what was going on, asked: "What is the point of this experiment? You are talking about raising awareness of these diseases, but what would my role be? What do people in this situation need from me? I understand writing about being more empathetic towards people in wheelchairs or not turning around at the sight of people with skin diseases. But inflammatory bowel disease? ”
60,000 people suffer from inflammatory bowel disease in Poland.
How I stopped loving food
Exactly - what about these diseases? I was about to find out when it struck ten in the morning one Thursday. It starteddoing quite well - starting at this time is comfortable. I managed to calmly prepare for work, get to her, start my duties. I realize that I had it much easier than patients with IBD - they cannot choose what time they could possibly feel worse …
I've been sitting on high heels for 10 years and waiting. Finally, a notification from the application appears - I have to open the first mystery envelope. There, I find IBD-related nutritional tips and a history of "my" illness. When it comes to food issues, it's a huge challenge. I like to eat very much, I try to eat he althy and it is rather a pleasure not a sacrifice for me. Rye bread, fruit, milk, fish, strong tea - I love it all. All I force myself to do is eat vegetables, so I was delighted to know that raw vegetables cannot be eaten with IBD.
This is where the joy ended. While in many diseases it is recommended to eat he althy food, in the case of IBD it is no longer about being tasty, and eating anything is a success. It is easier to say what cannot be eaten than what is indicated. You can not eat, among others products containing lactose, gluten, raw fruit and vegetables, meat, fish. What's left? Low-residue foods, which does not necessarily mean he althy. It can be, for example, wheat bread, rice gruel, mashed potatoes, steamed vegetables turned into mush.
For breakfast, I just bought some pulp from the children's section, and my friend and I were choosing lunch in the nearest places for half an hour. Finally it stood on potatoes and boiled carrots. The food was not tasty, bland, in small portions, we washed it all down with water only. We were hungry, which made it harder to concentrate, we felt worse mentally - a hungry person is a bad person.
I can want and my illness
The other elements of the experiment did not improve mental comfort either - from the moment it was launched, the application sent us various notifications and tasks every half an hour. First of all - associated with going to the toilet. In a limited time (a few minutes), we had to run up to her and send a photo of a door, paper or a towel as proof. "Fortunately, we are at work for 8 hours today, no exits, no conferences" - we thought.
At one point, the application asked us to put on a belt, which is in one of the mysterious packages - it was supposed to make us aware of how painful the course of IBD is. Again, it was easier than the sick - we could determine the strength of the fasteningstrap, and wearing it was extremely uncomfortable. This is the task (and the limited eating options) that I have the worst of memories of.
And I admit - I was supposed to wear the strap until 10 pm, and I took it off after a few hours. Meanwhile, as I read a few hours earlier in the history of "my" disease, the pain I felt is as high as 8 out of 10. To be honest, I have never had such pain, if it had been so, I probably would not have gone to work at all and the fact that I have to eat softened carrots would be my least problem. I now understand why patients have a lack of appetite …
During the exacerbation of the disease, there are extremely severe abdominal pain, recurrent diarrhea, flatulence, lack of appetite, fever.
"How often did you defecate today and what was the consistency of your stools?"
After lunch - telephone. The lady from the "hospital" is calling me. At her request, I open another package, and there … a stool collection container. At this point, I left the editorial office so that others would not eavesdrop, although, as I mentioned, these are people who are immune to hearing about "such" matters. Nevertheless, I would be ashamed to talk about my theoretical diarrhea in front of them. So I was walking in the corridor with this container, and people passing by could hear: "5 times in the morning", "watery stool", "nagging".
"Excuse me, where is the toilet?"
It's finally time to go home. Even before the experiment, my friend and I had planned to try to expose ourselves to additional "threats" during it - for example, we would go somewhere after work. When it all started, we dreamed of getting home safely (without having to visit the toilet on the way). Fortunately, the journey takes about 25 minutes. The app asked me what time I would be coming back, so I knew I had to hurry.
Along the way, I was wondering what I would do if the notification was about to come. Should I go into the store and ask if I can use the toilet? Or to accost a resident of a nearby block of flats? They'll think I'm weird, this behavior is definitely non-standard … I knew there were no toilets nearby (I downloaded the app on purpose), but luckily I managed to get home on time. The friend who lives further away was not so lucky - she would have to get out of the bus standing in the middle of the bridge. So she failed the task …
In many reports of people suffering from IBD, we read that they prefer to stay at home, in a safe environment, with a bathroom with a toilet and toilet paper next door, than to expose themselves to unpleasantness outside. They feel bad physically, and therefore worse and worse mentally - they avoid going outside, prefer to stay inloneliness than to expose yourself to unpleasant comments from others. After this experiment, unfortunately, I understand it.
bedtime surprise
A day at work with the application and a stressful comeback made me sleepy, I had a headache. After coming home, all I dreamed about was going to bed. I did so too, but I couldn't sleep because the app kept talking all the time. I felt tired, irritable, initial enthusiasm replaced by the desire for the experiment to end.
The worst, however, was at the very end - just before 20:00 I was supposed to unpack the last package. It was soft, pleasant to the touch. I open, curious, and there … a waterproof underlay for the bed. It made me even worse - it was like saying, “Hey, you want to quit, but it's not that easy. The sick person has no rest, the night is another challenge for him. "
However, I unfolded the foundation, took a photo and - finally - the experiment ended.
Finally…
During the 10 hours of the experiment, my attitude towards it went from being positive about doing something new to being tired at 8pm. I was still very happy to take part in it, but the disease dominated my life all day long.
After the experiment, what would my colleague answer to the question: "What is awareness in the case of IBD? And what do sick people expect? " Certainly not pity (or at least I would not like it), but the understanding that the inability to function normally may result not only from the fact that you are a person with disabilities or skin diseases - and it is difficult for us to understand. Oh, diarrhea, stomach ache - is it really that hard? Really! Because it concerns spheres that are hard to talk about. Paradoxically, it is easier to understand someone with apparent he alth problems.
Everyone is ashamed that their stomach is rumbling in a quiet room during a meeting, that they have diarrhea or, horror of horrors!, Trouble with unpleasant "smelling" gases.
The experiment is over, but I know that whenever a topic related to diseases, digestive system ailments appears in a conversation with (un) friends, I will definitely refer to it. I will also be less surprised at the unusual behavior of other people and not patronize people who are looking for a toilet, because they literally have to use it at the moment. I will understand the dismissal from work due to abdominal pain (because the one rated at 8 on a 10-point scale is really not a joke) and the fact that someone gives up on a promising event, because you will not be able to eat anything there, nor will you feel comfortably, nor will he have the strength to have fun. Becausewears - not only for 10 hours a day - those crippling shoes in the form of non-specific bowel diseases.
According to an expert
Prof. Dr hab. n.med. Jarosław RegułaHead of the Department of Oncological Gastroenterology, Oncology Center - Institute of Oncology Maria Skłodowskiej-Curie in Warsaw, head of the Department of Gastroenterology, Hepatology and Clinical Oncology of the Medical Center of Postgraduate Education, national consultant in the field of gastroenterology
"We are observing a growing scale of NCHN in the pediatric and adult population. This forces us to intensively search for the actual cause of the disease, select diagnostic methods and optimal therapies. Early diagnosis of the disease and the possibility of individual selection of therapy for the patient is crucial. Late diagnosis of the disease is essential. or the lack of optimal treatment often leads to complications, wasting of the body and the need for surgery, which can result in serious complications, including a permanent stoma. using modern therapies that extend periods of remission. "