With many people living with incontinence in silence, advocacy groups tasked with getting people the help they deserve have a huge hill to climb.
The Simon Foundation for Continence is committed to eradicating the stigma and misconceptions that can make people experiencing such symptoms hard to reach.
Group founder and president Cheryl Gartley explained: “Most people wait some time before bringing it up in a medical environment or even coming to a not-for-profit like us.”
“They think there is nothing that can be done other than manage the symptoms. People think ‘I’ve had three children, of course I am going to leak’ or ‘I’m getting older, it’s inevitable’.”
“But it’s not inevitable. It’s so important to see a knowledgeable physician, because it could be the first symptom of something serious – caused by something else happening in the body – and the symptoms might be greatly reduced with medical assistance.”
Helping people to speak up
Stigma, shame and embarrassment often stop people asking for help from a doctor, and many will keep the issue to themselves rather than share what they are going through.
Cheryl said an online survey with over 1,200 respondents conducted by the Foundation found that bowel and bladder incontinence were ranked in the top 10 most stigmatizing health conditions.
“What we find is that people either prefer to keep it hidden or they simply do not have the skills to know how to articulate it,” said Cheryl, adding that she knew one woman who used to get up in the middle of the night to dispose of her absorbent products so her husband and children didn’t find out.
Busting myths and breaking down stigma, among patients and clinicians alike, is a big part of the Foundation’s work.
“It’s a challenge, because not all doctors are interested in or knowledgeable about incontinence. Sometimes people can work up the courage to go to the doctor but don’t get the help they need. Then they are even more upset and distressed. It’s a vicious circle,” said Cheryl.
“We coach people on what to ask. Then if they do not get the help they need, they can then determine if they need to politely ask to be referred to a specialist.”
Disclosing incontinence on your own terms
The Foundation is addressing stigma across health conditions through its Rude2Respect project. As well as sharing the stories of people affected by health-related stigma, the program recognizes and celebrates individuals and organizations making a difference in society.
Another initiative is the “I Will Manage” educational program, a series of sessions which are delivered in hospitals and in other clinical settings by a multidisciplinary team.
Cheryl explained that people do not always feel comfortable talking about their incontinence leading to withdrawal and isolation.
“If you are living with intractable incontinence, not knowing when leakage might occur can lead to depression and the deterioration of quality of life,” said Cheryl, adding that people often modified their lifestyles to avoid being too far from a toilet.
Staff at the Foundation, in collaboration with stigma experts at Illinois Institute of Technology, are working on a new program to help people evaluate the pros and cons of keeping their incontinence a secret and to then decide if, to whom and alternatives as to how to disclose their incontinence.
Asking for help
Much has changed since the Foundation published its groundbreaking book for the public in the 1980s. At that time there were death threats for daring to promote this book and speak about bodily functions on television and radio stations across the nation. Yet, during this same time period, an Ann Landers column on the Foundation’s work garnered over 30,000 letters two days after it appeared in hundreds of newspapers throughout the US, with over 50,000 arriving within two weeks. Finally, people learned they had somewhere to seek information about their incontinence
There is still a long way to go to lessen the stigma surrounding this medical condition. To find out more about the Foundation and its programs click here.