Sonia Hadj Said
There is a young girl standing behind you, nervously tapping her feet. She looks like she’s in pain, her face in a grimace, impatiently awaiting the toilet. You’re probably rolling your eyes at this moment, feeling half-guilty, half-indifferent. If she had to wait till the last second, that’s not your problem. Suddenly, a weak, quiet voice whispers: “Excuse me, would you terribly mind if I went in before you?” You turn to look at her. “I have a rare disease,” she explains, even more quietly, looking for some understanding, her eyes begging you not to ask any questions.
What would you do?
Crohn’s and Colitis UK’s statistics show that there are roughly 300,000 people diagnosed with forms of Inflammatory Bowel Disease, of which 146,000 have Ulcerative Colitis. That means one person in the UK every 30 minutes is diagnosed with a disease that has no known cure so far. Dr Anton Emmanuel, a Medical Director from the charity Core says: “Ulcerative Colitis is an inflammatory condition in which the immune system targets your cells and there is a tendency for your large bowel to become inflamed. This is an ongoing and life-long condition.” It’s also invisible.
People see me and they think that I look healthy,” says Patrycja Dynowska, 25, an MA Physical Acting student at Kent University. Apart from looking slim and small she does, in fact, look healthy for someone with Ulcerative Colitis. She lives her life as normally as possible, but with a few differences. “I can go to work, then to my training, but I will have to run to the toilet 10 times a day. I always have to know where the nearest toilet is.”
Ulcerative Colitis is a very shy condition, unwilling to share any secrets
There is a young guy standing at the till in your local McDonald’s, furiously explaining something to the manager who looks at him blankly. He takes out some kind of a pass and shows it to him. “This is to show that I have the condition and you are obliged to open the toilet for me.” The manager answers that he can smell alcohol on the guy. “Yes, I was in a club, but the queue was too big and I can’t wait.”
What would you think?
With symptoms such as diarrhoea, cramping pains in the abdomen, tiredness and fatigue, loss of appetite, weight loss and anaemia, Ulcerative Colitis is a very shy condition, unwilling to share any secrets. “What we know from experience so far is that the cause is a mix of a few things,” explains Dr Emmanuel. “It’s something that has been hidden in one’s genes plus an abnormal reaction of the digestive system plus ‘the trigger’ which can be anything in the environment – stress, bacteria, diet, a virus.”
In Patrycja’s case the mix turned out to be related to stress: “I was on an exchange in France. There were too many hours, exams, things to do. I got diarrhoea with blood and mucus, grey skin.” Afraid of going to a GP in a foreign country where she risked not understanding properly, Patrycja waited until she was back home where at first she was told it was just diarrhoea before her symptoms worsened and finally a private doctor was able to diagnose her condition. According to Dr Emmanuel: “The problem is that the symptoms are similar to the ones of Gastroenteritis – a condition that causes diarrhoea.”
There is a girl on the bus with you. She goes to the toilet and spends a lot of time inside. After leaving, the smell is unbearable. You see two women looking at the girl unkindly, whispering and sniffing loudly. The girl opens a book and buries her face in it. The two women say how no one needs to do that on the bus, this is just plain rude. The girl’s hands seem to be shaking furiously.
How would you feel?
Once someone is diagnosed (very often at an age between 15-30 according to Crohn’s and Colitis UK’s research) it’s crucial to talk to family and friends and ensure they know what is happening. “People don’t like talking about it because it’s a personal matter,” says Dr Emmanuel. But when you’re at a young age and stress is one of the triggers of this dangerous disease, people around you should know how to help you. “One of the first things my mum asked was whether I had been having anal sex,” Patrycja recalls. “I knew she was just worried, though.”
It seems almost unfair that someone can be punished for pushing themselves for a better life
There is a young girl standing behind you, nervously tapping her feet. She looks like she’s in pain, her face in a grimace, impatiently awaiting the toilet. She is pretty, full of life and determined not to let anything get in her way. One of the 300,000 people diagnosed with Inflammatory Bowel Disease whose lives revolve around a toilet. They have to fight with the stigma of looking healthy while inside, their bodies are constantly fighting. Stress is our generation’s second name and we all have to face it every day. Fighting for better jobs, living in small rented rooms, trying to follow passions while making a living – it seems almost unfair that someone can be punished for pushing themselves for a better life.
Shit happens and life goes on. Not every disability is visible. Someone’s weight is just above six stones in an adult life. Someone is laying on a beach proudly showing off their colostomy bag. Another person is desperately trying to get into disabled toilet at McDonald’s while being told that no, they’re not disabled, after all, they have two legs and two hands. A young girl leaves the bus toilet really smelly and feels embarrassed because you’re looking at her. Should they just give up? Stop travelling, stay at home, give up on dreams that make it complicated? “Dreams come first,” says Patrycja. Her smile confident and the chamomile tea calming her tummy. She only looks around once to check for the nearest toilet. They will be fine, as long as you let them go in.
Banner image: @fart_lyfe