The stigma that surrounds incontinence also surrounds many other health conditions, both seen and unseen.

In 1982, the Simon Foundation began a journey to bring incontinence out of the closet, remove the stigma surrounding it, and provide help and hope for those with incontinence, their families, and the health care professionals who provide their care. Incontinence, the loss of bladder or bowel control, is one of the most stigmatized health conditions, affecting over 200 million individuals worldwide who had nowhere to turn for help.

It was the dark ages of incontinence. There were no advertisements on television, no products in drugstores or supermarkets, no books on the topic in libraries or bookstores. And little, if anything, on the subject was taught in medical and nursing schools.

Against this backdrop of silence, the Foundation drove groundbreaking endeavors. It published the first book for the public on the topic, Managing Incontinence: A Guide to Living with Loss of Bladder Control, followed by a 20-city book tour. The tour resulted in the first articles on the subject in Time magazine, Good Housekeeping, and other national and international publications. The widespread publicity led Ann Landers to write a column that appeared in newspapers across the country. In response, more than 30,000 pieces of mail arrived at the Foundation on one day alone. Cheryl Gartley, the Foundation’s founder, appeared on television programs across the U.S. and Canada, and as far away as Japan, New Zealand, and Australia.

 

 

 

The Innovating for Continence Conference Series

In quick succession, the Foundation’s I Will Manage educational program was offered in hospitals across the country. Its 800 number rang off the hook with orders for the book and with requests to received the first newsletter on incontinence, The Informer.

The Foundation has continued its groundbreaking initiatives over the years. It convened the first International Conference on the Prevention of Incontinence, held in London, England in 1997. That was followed, in 2003, by Stigma in Healthcare, the first conference on the stigma surrounding incontinence and its psychological impact. In 2007, it launched Innovating for Continence: The Engineering Challenge, a series of biennial international conferences.

Today, there are physicians who specialize in the treatment of incontinence, shelves full of products in drugstores and supermarkets or delivered to your doorstep, books galore on the topic, websites devoted entirely to incontinence products, and advertisements for medications and products on the nightly news.

Progress, indeed. And yet, in a 2015 online survey conducted by the Simon Foundation with over 1,200 respondents, fecal incontinence was ranked the fourth most stigmatized health condition, with urinary incontinence ranked eighth. This is an irrefutable indication of the tenacity of stigma surrounding incontinence.

Incontinence is not alone in this. The stigma that surrounds incontinence surrounds many other health conditions, both seen and unseen. Yet each condition has a story to tell of advances in management, treatment, and cure that have taken place while the stigma remains. For example, in the foundation’s 2015 survey, cancer was ranked as the ninth most stigmatized condition. AIDS was number one.

A rising tide floats all boats. Tackling health stigma is a job for everyone. The Simon Foundation’s experience and success in addressing one of the most stigmatized health conditions makes us determined and qualified to lead the way.

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