A Letter from the President of the Foundation

TO TELL OR NOT TO TELL” an Incontinence Disclosure Program. If you were curious about this title, you are not alone. You are likely one of a legion of people who live with a bladder health problem and are faced with the dilemma of treating and/or managing that problem day to day. This dilemma is usually complex in both its medical and social aspects. Dealing with it often involves interactions that may feel uncomfortable. How to deal with it effectively is a very individual choice.

It may seem strange that this introduction begins by telling you what this program is not. It is key to understand at the onset that we are not attempting to convince you that it is somehow wrong to keep your bladder challenges a secret – nor that you should feel differently and should tell others about your incontinence. However, a lot of people have found it freeing to talk about their incontinence. This program is about making individual, thought-out decisions, decisions that will differ from one person to the next.

What we do have to offer with this unique program about disclosing a bladder condition is the opportunity to equip yourself with the personal pros and cons, as you see them in your own life, and then a structure to determine whether you wish to: (a) tell others about your incontinence; (b) if so, then to decide with whom you wish to share this knowledge; and lastly (c) how you might tell your story differently if speaking to a doctor vs. sharing with your best friend, family, boss or others. Taking an analytical approach to incontinence, an issue that often feels emotionally charged, is something few of us have been trained to do. Instead most of us simply react, a typical human response.

Incontinence is a condition that millions of Americans are managing on a daily basis. It creates challenges in a wide variety of situations including the demands of the workplace, fear when traveling or at family events such as long wedding ceremonies; and even while doing everyday tasks like trips to the grocery store. We are all confronted with occasions when we question what to tell and who to tell it to. Will a disclosure help us navigate our circumstance or create an embarrassment?

Throughout this program you will read about others’ journeys and how their decision “To Tell or Not to Tell” affected their lives. The program is divided into three parts. The first is designed to help you decide if you’d like to tell others about your incontinence. If you analyze your pro and con list and the answer is no, you’ll have completed a thoughtful process and for now your work is finished. If your answer is that you think you would like to be at least somewhat more open about your health issue, then the second section will help you to decide who you wish to tell. The third part of the program helps you to think through not only what you’d like to share, but also the different responses you might receive so you are thoroughly prepared for a variety of reactions to your “news.”

On behalf of the entire team that the Simon Foundation for Continence assembled to develop this program, we hope that whatever you decide upon completion of the first section, you’ll have practiced a problem-solving technique that will improve your decision-making no matter what the challenges you face going forward.



President and Founder
The Simon Foundation for Continence