Stigma and Incontinenceby Jasmine Schmidt Patient Expert
Did you ever fall flat on your face in front of your first crush in junior high? Or how about more recently" have you ever gone to the bathroom during a business lunch only to find spinach in your teeth? Life is full of embarrassing moments just like these, where our face may redden temporarily, but life goes on and eventually we can (usually) look back and laugh at these situations.
Unfortunately, incontinence can all too easily lead to embarrassing moments that we don't take so lightly. For some reason, our culture chooses certain conditions and circumstances to stigmatize. With time, stigmas will often shift to another topic, lessen or cease to exist at all. For decades now, many have been working hard to erase the stigma surrounding incontinence.
The Simon Foundation for Continence has tried to "remove the stigma surrounding incontinence" for over 20 years now, and it's even a part of the foundation's mission statement. When the Simon Foundation was first starting up, the President and Founder, Cheryle Gartley, went on a twenty-city media tour to promote a book on incontinence. On more than one occasion her life was threatened by those who felt strongly against speaking publicly about, what they called, "personal matters." The stigma has lifted somewhat in the past 20 years.
My life isn't threatened these days when I speak around the world to doctors, nurses and patients. You can now walk into a drugstore and easily find absorbent products in an aisle marked "Incontinence Needs," when 20 years ago many drugstores didn't carry such products at all, and those that did certainly didn't advertise it by putting up signs. But is incontinence still stigmatized? You betcha.
Have you told your doctor about your incontinence? If you have, how long did you have the symptoms before mentioning it? Have you told your spouse? Your children? Your parents? Your co-workers? If you had a challenge with almost any other area of your body, for example, your heart, your elbow, your knee, your lungs, etc., you wouldn't hesitate to mention the problem to most of the people you're close to. Yet, when the challenge relates to your bladder or bowel, suddenly it becomes too "embarrassing" or "personal" to discuss. We feel the stigma for many different reasons. Perhaps you've been accidentally wet in public and felt the stares. Maybe you've carried absorbent products with you only to have colleagues ask why you always carry around such a large bag. If you experienced enuresis (bedwetting) as a child, you've dealt with parents and caregivers telling you to "control yourself" and act like a "big boy" or "big girl."
Stigmas are all around us, and living with incontinence plunges you into the midst of one of the most stigmatized health conditions. Some stigmatized conditions will automatically "out" you to the public, such as a facial disfigurement. Those with incontinence, however, have the ability to pass in society as "normal." While this may seem like a blessing to the outside world, passing isn't all fun and games. It means deciding who to tell and figuring out clever ways to disguise the condition when you deem necessary. The pressure is felt by even the best passer, because you know that at any time an accident can unwittingly "out" you.
For some people, dealing with the stigma of incontinence can be more overwhelming than dealing with the medical condition itself. Luckily, there are some ways to handle your situation that will help you survive this. The first step to overcoming stigma is to seek treatment despite it.
Incontinence is first and foremost a medical condition and should be treated as such. You and your body deserve at least that much Isolating yourself because of your incontinence will only feed the stigma, so find supportive friends and family and keep living your life. Don't be afraid to educate others about your condition. I find that many people make inappropriate comments only because they don't know the consequences and implications. Once you explain yourself, many people will become understanding and sensitive. You or I alone can't stop our society from stigmatizing incontinence. But if we each make an effort to live fully and educate each other, the stigma iceberg will slowly melt away.
Learn more about the Simon Foundation's Anti-Stigma Campaign.