Please note that this article describes the personal story of Cheryl Stein and may not be typical of the overactive bladder patient experience. This article is not intended as medical advice or to replace advice offered by medical professionals.
A bout of encephalitis – a swelling of the brain – caused by a mosquito bite resulted in Cheryl Stein developing overactive bladder (OAB), a distressing condition caused by a disconnect between the brain and the bladder.
Introducing her TED-style talk during a two-hour breakfast meeting hosted by Astellas on the third day of this year’s Urology Care Foundation Advocacy Hub, Stein talked about her own experience with OAB – asking the audience to imagine what it feels like to walk a mile in her shoes.
For Cheryl, the condition regularly puts her in a state of denial: “I don’t want to have OAB so I refuse to acknowledge it at times.” Unfortunately, though, this can lead to an accident (leaking or incontinence), which in turn draws attention to her condition and has a negative psychological effect for her as an individual.
Stein recounted one of her accidents during her talk. It began with a trip to Canada with her husband. On their way home from their holiday, their car was stopped at the border. During the inspection of her car, Stein realized she had a full bladder and needed to visit a restroom as soon as possible. She tried to exit the car but was told she had to wait for the inspection to be completed.
Eventually, she could use the restroom – but had an accident on her way. After a change of clothes, Stein and her husband finally crossed the border, but it’s an experience that stays with her to this day.
“It was a humiliating experience and highlighted to me the lack of understanding about OAB that still exists,” said Stein.
Her tale is an example of misunderstanding she fears is common, leading her to shy away from talking about her condition for many years. Rather than giving into that fear though, Stein now shares her message to help those with related stories and help break the stigma attached to OAB.
The more people who talk about OAB, the better informed healthcare providers can be, according to Stein. “Patient experiences can really help physicians understand what matters to OAB patients,” she says. “If we share our stories, not only will we get a more understanding society, we’ll get more patient-centered care too.”