Coping with the impact of incontinence: this article presents Part 2 of a multi-part series offering the most timely educational information, innovative approaches, products and technology solutions as well coping and stigma-fighting approaches available on the subject of incontinence.

Many years ago while coauthoring the first book for the public on incontinence, I interviewed families with children who had incontinence and heard firsthand about its life impact. One teenage girl, born with spina bifida, told me about an "accident" in school, which created such an aftermath of teasing that she refused to return. Her father resigned his position; they sold their home; and six people's lives turned upside down as they started fresh in a new community. From that day forward, the entire family lived in constant fear that this could happen again.

Much about incontinence has changed since then; retail shelves today are stocked with absorbent products and television advertisements for bladder medications run during the nightly news. Yet the stigma and the psychological and emotional impact of incontinence remain a defining and disruptive force in the lives of millions.

Research has shown that the amount of leakage experienced is not related to the degree of emotional distress a person feels nor do the feelings a person with incontinence experiences correlate to age, cause, or length of time they have been incontinent. Individuals whose incontinence cannot be cured grapple with many emotions--chief among them fear, the fear of being wet or of having an odor in public. Shame, embarrassment, guilt, and the desire to isolate oneself (by staying close to home and a toilet) lead to a negative self-image and loss of self-confidence.

It is doubtful that anyone will ever claim that incontinence is not embarrassing. We have learned as adults that life offers constant opportunities for embarrassment--spilling coffee on the boss, trailing toilet paper stuck to one's shoe when leaving a washroom, tripping over a microphone cord on stage. All rank right up there; yet we manage to somehow move on. Coping is something we do every day but don't notice unless a problem continues. Teaching our children coping skills so that incontinence does not take up unnecessary emotional energy or contribute to low self-esteem is extremely important. This can be addressed both within the family unit and in society at large by each of us doing our part to help defeat stigma in healthcare.

For many parents, it is not a matter of if, but when, their child's incontinence will be exposed--not an event we were trained to deal with by either family, school, or a social etiquette. However, there are skills, which can be learned. A good start is to examine the word "accident." The dictionary defines an accident as: "an unforeseen or unplanned event." For most, even the first time they are wet in public is something they were already aware could happen. By choosing more neutral words to describe this event we encourage different thinking and feeling about the event.

There is no right way to prepare; each family is different and so is each child's reaction. Choices might include: knowing where all the public bathrooms are; carrying extra clothing in a stylish bag; telling others about incontinence and explaining how they might be of assistance (so that they too can be prepared); planning ahead what you intend to say to yourself; and teaching your child positive self-talk. Statements such as "I can only do my best," "I am afraid because I decided to be, so I can decide not to be," or "I've survived this and worse before" are not only true, but are also statements that can help an individual avoid negative self-talk.

Everyone engages in self-talk, your internal thought language. If self-talk is accurate and in touch with reality, then you function well but if irrational and untrue then you experience anxiety and emotional disturbance. Regarding incontinence, we can say to ourselves: "I may experience inconvenience and annoyance--not anxiety, depression, or anger." Instead of saying "It is not fair that I have to suffer with incontinence," you can substitute thoughts such as "Life is not fair. Life is a sequence of events, some of which are inconvenient and painful. If problems occur, it is up to me to solve them."

I have been fortunate (due to my misbehaving bladder) to have traveled the world speaking to audiences from Europe to Japan, Australia to New Zealand. Sadly, not one hand has ever shot up from any audience member when I've asked, "How many of you have never heard a child being told they are either a good girl or a bad boy depending on the success the child is having with toilet training?" Do we teach our children that they are good or bad based upon any other muscle in the human body? We need to speak up whenever hearing others use this approach and tactfully suggest a more appropriate phrase like, "Isn't it nice that you are learning this skill?" Can you imagine the reduction of stigma surrounding incontinence that could be achieved in just one generation of kids who heard that instead of "good boy" or "bad girl?"

A common definition of stigma is: the recognition of difference based on a distinguishing characteristic or mark and a consequent devaluation of the person.

The sociologist, Erving Goffman, created a very helpful word for talking about stigma--Quiggles. Quiggles is a made-up term to identify all of the variations and differences of the human body--which occur either from birth, daily wear and tear, accidents, or illness--which can be, and will be, stigmatized. Incontinence certainly qualifies as a Quiggle.

The academic literature is full of examples of the behaviors, which help to create stigma, including the use of language and nonverbal messages, such as staring. No matter how twisted your tongue becomes, person-first language is essential because language not only reflects, but also creates reality. The word "wrong" is an example of creating reality. Individuals with health conditions are constantly asked by strangers, "What is wrong with your leg, nose, bladder, etc." Like multiple impressions in advertising, how many times does it take for an individual with a stigma to hear the word wrong before he or she internalizes the feeling that something is indeed wrong with them?

In 2003 The Simon Foundation for Continence (www.simonfoundation.org) convened an International Conference on Stigma in Healthcare. Stigma experts presented research and suggestions from other health issues as to how people with incontinence could better deal with stigma and how organizations like ours could better advocate for us all. One paper by psychologists Julie Garcia and Jennifer Crocker from the University of Michigan concluded with some notable advice:

"The great discomfort that stigmatized and non-stigmatized people feel when interacting with each other is, in the final analysis, about ego. Each is afraid of being devalued, being wrong, being accused, or being inferior. These experiences are painful for our ego, but they do not represent real dangers to our well-being unless we let them. Our egos want to see us as the victim and the other person as the perpetrator. But we are all both a victim and a perpetrator when we are driven by our egos.

"The solution, we have argued, lies in finding goals that are not driven by our ego. Goals about what we can learn, what relationship we want to create, or what we want to build or contribute that is larger than the self can provide the way out of the destructive cycles of interaction between the stigmatized and stigmatizer. They can help us to create trust, to find our common ground, and together to make a difference in the world."

Putting aside our egos to better manage our emotions--now there is an idea easier said than done. Given that there are an estimated 200 million people worldwide experiencing bladder control problems (in addition to those with fecal incontinence), just imagine a world where these talented people stopped hiding in their homes, having developed coping mechanisms for handling incontinence and thus being able to more fully participate in society, helping to create a world that is stigma free.

In 2003, the Simon Foundation, through the Foundation's Initiative to Defeat Stigma, released the song, "I Am More: The Anti-tigma Song." With music by Ed Tossing and lyrics by Ed Tossing, Gaia Tossing, and Cheryle Gartley, "I Am More" offers hope to all those who experience stigma and those who care about and for them.

   I Am More

   Some can walk, some can run
   Others only feel the sun
   But the world that we've been given
   Is for all of us to live in
   Some of us can feed ourselves
   Some need the hand of someone else
   But the most important part
   Is that we've been given hearts

   Bridge

   When we stigmatize, we don't recognize
   How much we're like each other
   'Cause if we stigmatize, we won't realize
   All that we could be together

   Chorus

   I am more than you can see
   There are dreams inside of me
   I have all my dignity
   This is my reality
   One by one we'll reach the day
   When each of us can turn and say
   Whatever changes we go through
   I'm still me and you're still you
   On our trips around the sun
   A challenge comes to everyone
   But each life has a reason
   There's a gift in every season
   He has scars, she rides a chair
   And others hide what they can't share
   We may face it on our own
   But we never are alone

   Ending Tag Line

   Think of all that we could be
   In a world that's stigma free

A CD of "I Am More" is available for purchase from the Simon Foundation. Call 1-800-23SIMON.

Cheryle B. Gartley is President of the Simon Foundation for Continence and has published extensively in professional journals including The Lancet, the Journal of Urological Nursing, and Sociology Today. She is the co-author of the first anti-stigma song, "I Am More" (see sidebar at left) and writes a monthly blog on stigma--"Living with Quiggles." Ms. Gartley is the first person to speak publicly on behalf of individuals with incontinence, appearing on talk shows such as Good Morning Australiaand network news programs in Japan, Canada, Germany, and throughout the United States.