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Incontinence and Relationships

Many otherwise healthy people suffer from bowel incontinence or accidental bowel leakage. Symptoms that are distressing and hard to talk about can isolate a person and restrict inter-personal relations.

Relationships – with friends, family, doctors, and caregivers – are one of the most important things in contributing to how well a person with incontinence is able to overcome the obstacles imposed by the condition, and carry on with normal daily living.

Relationships which provide understanding allow people to feel empowered. They are better able to contend with the every day challenges of living with incontinence. People are more likely to be empowered when they’re able to express themselves and receive support.

It takes courage for a person to say that they experience incontinence. To be met with disinterest or a lack of understanding only heightens feelings of hopelessness or isolation. These issues create challenges to maintaining and building relationships that people face who suffer from incontinence.

Forging a strong relationship takes work on both sides. Here are some pointers on how to ensure that your relationships are strong and supportive.

For care givers and family members

Recognize that, in most cases, the person is unable to control this. People with incontinence go to great lengths to hide this and to avoid an embarrassing situation. The energy spent trying to manage this so that other people won’t know can be enormous. People become physically and emotionally tired from having to act as if everything is “just fine.”

It is important to listen. Many people with incontinence just need an outlet to express their frustration. They need to be able to work through the levels of grief that are associated with the loss they feel.

People with incontinence should not be made to feel bad about themselves, shamed, or embarrassed even in a joking way. Humor can be uplifting, but only if the person has come to terms with the condition. There is nothing funny about incontinence for the person who lives with it every day.

People with incontinence need to be prepared. It may mean wearing protective undergarments. It helps to have clean-up supplies and extra clothes available at all times. Wearing a protective undergarment is difficult to accept. People will avoid wearing them as long as possible. There is a sense of denial that exists with incontinence. Wearing a protective undergarment means acknowledging, and no longer denying, the incontinence.

Reassurance of access to restroom facilities is important. The first thing to do, when somewhere outside the home, is to identify where the restroom is and assure easy access.

It is important to be flexible. Plans may need to be changed at the last minute. If the person with incontinence does not feel comfortable leaving home, they should not be forced to do so. Tomorrow may well be a better day.

For medical professionals

It is imperative that those unable to care for themselves are treated with dignity. Listen to what the needs of the individual are. Give them as much information on the subject as possible. Additional education materials are available through IFFGD and other organizations.

It is important that you help the person with incontinence maintain an attitude of self confidence and self respect.

Remember, incontinence is a personal struggle. You can become an important ally. If you find yourself saying, “This is something you will just have to learn to live with,” then please offer that person information on how to live with it.

For the sufferer

Communicate your needs to your partner. The other party in your relationship may not truly understand why you withdraw. They may somehow blame themselves, even if it seems obvious that you are just making accommodations to your incontinence. You may need to clearly express your needs and fears. Your relationship partner may not be able to open up to you because they misunderstand what you need from them. Because this is a hidden condition, sometimes people feel helpless that there is nothing they can do to help you. You may need to reassure your partner that you want understanding and support rather than “action” on their part.

Seek support from other places when you are still struggling with a difficult relationship. If you are finding it difficult to open up in your primary relationships, you may find more strength by establishing another secure, supportive relationship on which to “practice.” Talk to a nurse or doctor, or find a support group. IFFGD offers a toll-free number if speaking about incontinence face-to-face with someone is too embarrassing yet. You may also be able to become more secure in talking about these issues by starting with the anonymity of email or the Internet.

Adapted from IFFGD Publication: Biofeedback, Incontinence, and the Patient’s Perspective by Nancy J. Norton, President and Founder of the International Foundation for Functional Gastrointestinal Disorders, Milwaukee, WI.

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IFFGD is a nonprofit education and research organization. Our mission is to inform, assist, and support people affected by gastrointestinal disorders.

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