Clutching her British passport in her hand, Arya Sunil stood in stunned disbelief as an elderly woman ranted and hurled racist abuse at her in the airport. The reason for her vitriol: Sunil had just come out of the airport’s disabled toilets.
“She went absolutely mad at me and said: ’I know you probably don’t understand English, but this is a disabled toilet. If you don’t understand the rules, go back to your own country,’” recalls the 21-year-old. Not only was the tirade unnecessarily cruel, it was also unjustified. Sunil was entitled to use the toilet because she has Crohn’s Disease, the inflammatory bowel condition that means when she needs the loo, she needs to go right away.
While the verbal attack reduced Sunil to tears, she tells HuffPost UK that she didn’t want to cry in front of the woman and focused instead on trying to calmly explain why she had been using the disabled toilet. “I told her that I spoke perfectly good English and explained I had Crohn’s. But by this point, she was so mad with anger, she didn’t seem to be taking in what I was telling her.”
A few weeks earlier, Sunil had gone through surgery for her Crohn’s. “I was on my way on a holiday to Greece that my mum had paid for as she wanted me to have a treat after the trauma of everything I had been through,” she says.
Sunil isn’t alone in being wrongly criticised for using a disabled toilet when they have an “invisible” illness or disability. HuffPost UK previously reported how student Amber Davies, also 21, was accused of “snorting, dealing and having sex in the disabled toilet” by a member of staff in a Wetherspoons pub. Davies was diagnosed with ulcerative colitis when she was 13 and the chronic condition meant her stoma bag had to be emptied up to 15 times a day.
Sunil says those with “invisible” disabilities, such as Davies and herself, often face ignorance, but that on numerous occasions, she has faced “double discrimination” – where she is targeted for her disability and her ethnicity.
“Facing discrimination for one of these aspects in isolation is awful but to face double discrimination in such a way really hits your confidence and makes you feel worthless,” she says. “It happens so many times, you become numb to it.”
Sunil, who is from Ipswich and now lives and works in London, first experienced unusual symptoms including stomach pains and blood in her stools while she was on work experience at the age of 15 and she initially put it down to nerves. As time went on, the discomfort got progressively got worse. She felt sickly, couldn’t keep anything down and was in severe pain. But when she went to her GP’s surgery, her symptoms weren’t taken seriously, she says.
Having visibly lost weight, it was insinuated that she had an eating disorder. “It was before my GCSEs and I spent most of the time in bed,” she recalls. By the time Sunil saw her third doctor, she had lost around 20kg and was escalated to hospital. Blood tests and a CT scan eventually led to her Crohn’s diagnosis.
“I was quite naive at the time” recalls Sunil. “I knew it was a chronic condition but I didn’t understand the true depth of the condition I had been diagnosed with. Now, I look back and realise that was the moment my changed forever.”
Crohn’s is a lifelong condition where parts of the digestive system become painfully inflamed. It can be painful, debilitating and there is no known cure. Sunil has an aggressive form of the disease and, early on, she was given a series of medications, steroids and immunosuppressants, but her body didn’t respond to any of them. “Instead, I experienced all sorts of side effects and my Crohn’s was getting worse.”
In desperation, she was tried on eight weeks of Modulen, a milky, protein- powdered formulation designed to be her sole source of nutrition. “You don’t have anything else to eat,” explains Sunil. ”It gives your body the nutrients it needs and aims to give your bowels a rest. All my friends were eating and drinking around me. It was a really difficult time and really hit my confidence.”
When a patient is diagnosed with Crohn’s at a young age, doctors sometimes postpone surgery until they are older. But as nothing was working for Sunil, they moved her on to invasive treatment. She was 16 when she had 30cm of her bowel cut out, which had been badly ulcerated and damaged by inflammation.
A few years later, she had further surgery – shortly before the toilet incident.
“I don’t even notice who is going to the toilet and who isn’t so I don’t know how these people have the time to pay so much attention to it,” Sunil reflects. “There comes a point when I just don’t have the energy to challenge them. But I think it is important to make my point so people don’t live in ignorance.”
As well as discrimination from strangers, Sunil says she has faced stigma and a certain lack of understanding from some people within her own community.
“With a condition like Crohn’s, because it is invisible, it makes explaining it to people very difficult as it is not something they can see like a broken arm or broken leg,” she says. “For me, what characterised my condition was how skinny I became. I was literally skin and bones.”
At her healthiest weight, Sunil was 55kg, but at her lowest, she dropped to 32.5kg (less than six stone), “I had to deal not only with the rapid progression and side effects of my aggressive Crohn’s but also South Indian ‘aunties’ and ‘uncles’ making comments about my weight and suggesting remedies to cure me.”
Sunil says that she took to dressing to look bulkier so that ‘aunties’ wouldn’t “shove food” in her face and ‘uncles’ wouldn’t give her lectures. “There was a real focus on my body and weight and everyone felt they had a right to comment on it. The hardest part for me wasn’t the Crohn’s but dealing with what the community was saying about me,” she says.
“Aunties would put food on my plate and force me to eat it which was unacceptable. Then I would get ‘jokes’ such as people saying they had better not sneeze around me as the force of the sneeze might cause me to fall over.”
Rumours even began circulating hat her mum wasn’t raising her properly; that it was her fault Sunil was losing weight, she says. “People were gossiping among themselves and it was a very toxic environment. For a 15-year-old girl going through such a massive change in my life, it was completely crushing.”
Sunil, who moved to London for university in 2016, says it took moving away from Ipswich for a couple of years to reach a point where she was no longer ashamed of her Crohn’s. Even her new university friends didn’t understand why she needed an en suite bathroom – until they witnessed how ill she could get.
“People don’t always understand because it’s an invisible condition,” she says. “Sometimes, people think I’m overreacting because I look healthy on the outside. But one of the side effects of Crohn’s is that when I need the toilet, it is a matter of urgency and I need to make a run for it.”
It’s for this reason that people with Crohn’s are able to use disabled toilets. Sunil has a ‘Can’t Wait’ card from the charity Crohn’s & Colitis UK, which she can show people, though she adds: “I know I can’t singlehandedly change the establishment and that I don’t have to prove to anyone that I am worthy of using a disabled toilet.”
In July this year, Sunil successfully graduated from Queen Mary University with a first class degree in accounting and management and now works in the city. “While I was doing my GCSEs and A-Levels, I couldn’t give them my best shot because of my illness,” she explains. “So I was determined to get a first in my degree and worked so hard for it.”
Sunil is now self-managing her Crohn’s, making changes to her lifestyle including not drinking coffee or alcohol and not eating meat. She loves Bollywood dancing and is back doing it after being forced to stop for many years because of her illness – she describes this as feeling like “a slap in the face” to those who said she would never dance again.
“These comments are borne out of ignorance,” she says, adding that she hopes a more honest conversation will break down stigma both within her culture and among people like the woman who racially abused her at the airport.
“I don’t want another girl in the Indian community to feel isolated and as though she is fighting this all by herself,” she says. “Now, if someone makes comments about my weight, I will call them out about it and explain about Crohn’s Disease.
“And if I need the toilet, I’m not shy to announce it as I’m no longer ashamed.”
Ultimately, the abuse has given her a thicker skin and made her more confident. “I’m a Crohnnie and I’m doing exactly what I want to be doing. I fight through pain and side effects because I’m so much more than just my Crohn’s.”
CROHN’S AND COLITIS
Crohn’s Disease and Ulcerative Colitis are two forms of Inflammatory Bowel Disease, both lifelong conditions. When you have Crohn’s or Colitis, your immune system doesn’t work properly and the body starts attacking itself causing ulcers and inflammation. There are at least 300,000 people in the UK with Crohn’s or Colitis – but there’s growing evidence that the number is almost double this. For information and support, contact Crohn’s & Colitis UK via www.crohnsandcolitis.org.uk/
support or call 0300 222 5700.