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 airportâs disabled toilets.
âShe went absolutely mad at me and said: âI know you probably donât understand English, but this is a disabled toilet. If you donât understand the rules, go back to your own country,ââ 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 Crohnâs 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 didnât want to cry in front of the woman and focused instead on trying to calmly explain why she had been using the disabled toilet. âI told her that I spoke perfectly good English and explained I had Crohnâs. But by this point, she was so mad with anger, she didnât seem to be taking in what I was telling her.â
A few weeks earlier, Sunil had gone through surgery for her Crohnâs. âI 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,â she says.
Sunil isnât alone in being wrongly criticised for using a disabled toilet when they have an âinvisibleâ illness or disability. HuffPost UK previously reported how student Amber Davies, also 21, was accused of âsnorting, dealing and having sex in the disabled toiletâ 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 âinvisibleâ disabilities, such as Davies and herself, often face ignorance, but that on numerous occasions, she has faced âdouble discriminationâ â where she is targeted for her disability and her ethnicity.
âFacing 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,â she says. âIt happens so many times, you become numb to it.â
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, couldnât keep anything down and was in severe pain. But when she went to her GPâs surgery, her symptoms werenât taken seriously, she says.
Having visibly lost weight, it was insinuated that she had an eating disorder. âIt was before my GCSEs and I spent most of the time in bed,â 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 Crohnâs diagnosis.
âI was quite naive at the timeâ recalls Sunil. âI knew it was a chronic condition but I didnât 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.â
Crohnâs 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 didnât respond to any of them. âInstead, I experienced all sorts of side effects and my Crohnâs was getting worse.â
In desperation, she was tried on eight weeks of Modulen, a milky, protein- powdered formulation designed to be her sole source of nutrition. âYou donât have anything else to eat,â explains Sunil. âIt 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.â
When a patient is diagnosed with Crohnâs 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 â shortly before the toilet incident.
âI donât even notice who is going to the toilet and who isnât so I donât know how these people have the time to pay so much attention to it,â Sunil reflects. âThere comes a point when I just donât have the energy to challenge them. But I think it is important to make my point so people donât live in ignorance.â
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.
âWith a condition like Crohnâs, 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,â she says. âFor me, what characterised my condition was how skinny I became. I was literally skin and bones.â
At her healthiest weight, Sunil was 55kg, but at her lowest, she dropped to 32.5kg (less than six stone), âI had to deal not only with the rapid progression and side effects of my aggressive Crohnâs but also South Indian âauntiesâ and âunclesâ making comments about my weight and suggesting remedies to cure me.â
Sunil says that she took to dressing to look bulkier so that âauntiesâ wouldnât âshove foodâ in her face and âunclesâ wouldnât give her lectures. âThere 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 wasnât the Crohnâs but dealing with what the community was saying about me,â she says.
âAunties would put food on my plate and force me to eat it which was unacceptable. Then I would get âjokesâ such as people saying they had better not sneeze around me as the force of the sneeze might cause me to fall over.â
Rumours even began circulating hat her mum wasnât raising her properly; that it was her fault Sunil was losing weight, she says. âPeople 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.â
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 Crohnâs. Even her new university friends didnât understand why she needed an en suite bathroom â until they witnessed how ill she could get.
âPeople donât always understand because itâs an invisible condition,â she says. âSometimes, people think Iâm overreacting because I look healthy on the outside. But one of the side effects of Crohnâs is that when I need the toilet, it is a matter of urgency and I need to make a run for it.â
Itâs for this reason that people with Crohnâs are able to use disabled toilets. Sunil has a âCanât Waitâ card from the charity Crohnâs & Colitis UK, which she can show people, though she adds: âI know I canât singlehandedly change the establishment and that I donât have to prove to anyone that I am worthy of using a disabled toilet.â
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. âWhile I was doing my GCSEs and A-Levels, I couldnât give them my best shot because of my illness,â she explains. âSo I was determined to get a first in my degree and worked so hard for it.â
Sunil is now self-managing her Crohnâs, 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 â she describes this as feeling like âa slap in the faceâ to those who said she would never dance again.
âThese comments are borne out of ignorance,â 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.
âI donât want another girl in the Indian community to feel isolated and as though she is fighting this all by herself,â she says. âNow, if someone makes comments about my weight, I will call them out about it and explain about Crohnâs Disease.
âAnd if I need the toilet, Iâm not shy to announce it as Iâm no longer ashamed.â
Ultimately, the abuse has given her a thicker skin and made her more confident. âIâm a Crohnnie and Iâm doing exactly what I want to be doing. I fight through pain and side effects because Iâm so much more than just my Crohnâs.â
CROHNâS AND COLITIS
Crohnâs Disease and Ulcerative Colitis are two forms of Inflammatory Bowel Disease, both lifelong conditions. When you have Crohnâs or Colitis, your immune system doesnât work properly and the body starts attacking itself causing ulcers and inflammation. There are at least 300,000 people in the UK with Crohnâs or Colitis â but thereâs growing evidence that the number is almost double this. For information and support, contact Crohnâs & Colitis UK via www.crohnsandcolitis.org.uk/support or call 0300 222 5700.