Living With Polio
Communication is a two-way street. Participants in any relationship must have a mutual respect for the values, experiences, and skills that each brings to the encounter. Everyone is responsible for his/her own feelings, and experts recommend that feelings be expressed in the first person. Acknowledge them but do not place responsibility for them on someone else. For example, saying, “When such and such happens, I feel…” is preferable to saying, “You make me feel ….”
Feelings are not right or wrong, good or bad. An honest expression of feelings by everyone allows the opportunity to understand each other’s point of view and gives each the choice to make changes in his/her behavior. Expecting others to be mind readers about personal feelings or experiences is fraught with the potential for serious misunderstandings.
Communication around disability is difficult for both sides, not knowing what to say, where to look. Silence is often the default position for people with disabilities, because silence can protect privacy (Iezzoni, 1998). But silence reinforces the idea that there is something to hide. Many people with disabilities do educate others by speaking out and living by example. One explanation for silence from people without disabilities is fear. Having a disability represents loss of control. Unlike other minority groups, having a disability represents a category a person may join at any time, and one reaction is to invalidate those who personify it by not communicating with them (Iezzoni, 1998). The best advice for interacting with people with disabilities is to be caring and respectful, to offer choices and options and accept the answers, and to remember people with disabilities “are human.”
Good communication between polio survivors and their health care providers is not only desirable, but essential for improvement in the quality of life of the survivor. Most physicians practicing today were not practicing during the time that polio was a fairly common disease, and few diseases are similar to polio. Survivors may need to provide information about polio and its late effects to their health care professionals. It may be useful to interview them until finding one who provides a comfortable atmosphere for talking about health concerns and feelings; to prepare a concise written summary of the medical history/experiences for a physician at the first visit; and to make a list of questions and concerns in advance, so important issues are not neglected during the appointment. Likewise, it may be useful to take notes during the visit or ask for a brief written summary of the diagnosis(es) and recommendations; to invite a trusted friend or family member to the appointment to function as another “set of ears” and/or as an advocate (Marny Eulberg, personal communication, 1998); and to analyze situations that were unsatisfactory in the past, such as feelings of being inadequately informed or powerless, to develop a strategy to prevent them from happening again (Korsch & Harding, 1997; Pincus & Sanford, 1992).
Excerpt from PHI’s “Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors.” © 1999