My hidden disability means people judge me - it makes me anxious to go out

Laycie Beck reports on Emma Sellars, now 24, whose life changed at 16 when doctors diagnosed ulcerative colitis, a chronic inflammatory bowel disease, followed by years of medication, infusions, steroids and injections for flare-ups and severe pain. By 18, she says the side effects left her with “no choice” but surgery to form an ileostomy and remove her large bowel, leaving a stoma and a bag to collect waste, and she says the surgery “saved my life.” She has since undergone nine more surgeries and, since 2022, needed artificial nutrition through a feeding tube into her small bowel—realities that can still be treated as an invisible disability when the public assumes disability only “counts” if it is obvious.

Emma says people should not feel like they “owe someone an explanation” for using accessible toilets, yet she describes being policed anyway: “We shouldn’t be judged for using one just because we don’t ‘look’ like a Person with a Disability.” She says she often receives looks when she uses the toilets, and that friends with similar conditions have faced rude comments too. She adds that strangers assume that if someone uses an accessible toilet they “must be in a wheelchair” or “must be old,” and she says those encounters make her “more anxious to go out.”

Beyond the stares and comments, Emma says many accessible toilets are not actually accessible for her condition because they are messy, not clean, and missing what she requires for a bag change: “you need a shelf, you need a mirror,” and “you need a bin,” yet “a lot of them don’t have it.” She explains she empties her bag kneeling down, so “if the floor is wet and mucky, it’s not ideal.” A spokesperson for Colostomy UK says a lack of suitable toilet facilities has a “very real impact” on people living with a stoma, citing a survey where 62 per cent said inadequate or unsuitable toilet provision affects day-to-day life, and 25 per cent said they have experienced verbal or even physical abuse for using an accessible toilet.

Emma also says she has recently been diagnosed with Epilepsy, and she describes living with the fear that “if I go in public I might have a seizure.” She says she has to “rely on other people to stay safe,” but there is not a lot of public awareness of what to do if someone has a seizure, and even friends and family can be unsure. She closes by saying “There needs to be more out there about it,” because she is not the only one feeling anxious about going out and having to rely on the public or a stranger “to keep them alive essentially”—a clear demand for Community Builders to treat access, respect, and shared responsibility as non-negotiable.

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By: Laycie Beck