'Romancing The Stoma' And Coping With An Invisible Disability

Dec 13, 2017

For some people with severe gastrointestinal illnesses or cancers, bodily wastes might need to be released through a stoma, or an opening in a patient’s body. Patients with surgically-made stomata use a bag that attaches to their body to keep that waste contained.

For many people, such as London resident Natalie Toper, who was profiled by the BBC this week, creating an artificial stoma is a life-saving procedure. Toper had the operation after she was diagnosed with late-stage bowel and rectal cancer three years ago. Ever since, she’s been living with a so-called “invisible” disability — and dealing with it in public spaces can be draining: 

The mother of one says she often faces hostility when trying to use public disabled toilets. 

Natalie explains: "Each and every time I have been met with verbal and physical abuse by both the able-bodied and visibly disabled communities, for trying to access facilities I am fully entitled to use.

Toper is one of a growing community of stoma wearers trying to raise awareness and destigmatize talking about GI issues and the necessary measures such illnesses entail.

"I felt like I was being punished for a crime I didn't know I had committed," she recalls. "But the choices were, 'Have a stoma and live or don't have one and die, and die quickly.'"

Wearing a stoma: A fight for acceptance

Imagine being told that you have a life-threatening illness. Imagine having to relearn how to carry out previously straightforward tasks such as using a public toilet. Imagine not only having to come to terms with all of this but also facing hostility because you have a hidden disability.