Living With Polio
Indicators of coping were first described by Beatrice Wright (1982). Coping individuals focus on what they can do, rather than on what they cannot do; play an active role in their lives, rather than respond as passive victims; and participate in areas of life seen as worthwhile and meaningful. Problems are perceived to be manageable, rather than overwhelming. Personal problems are not kept at the forefront of their attention.
Persons who cope appreciate their accomplishments and do not depreciate them because they do not meet some “normal” standard. Coping individuals participate in valued activities, share in the satisfaction of living, and manage difficulties by making changes in their physical and social environments, such as eliminating architectural barriers in their homes and making new friends. They do not wait for a “cure” to fix everything.
To live on satisfactory terms with their increased limitations, polio survivors may need to make important realistic value changes; that is, they cannot deny their disability. When persons successfully cope with their disability, their ability to change and to maintain relationships is enhanced. When they succumb to their disability, their lives, and the lives of those around them, are negatively influenced.
Coping has become a two-part process for many survivors. Following the acute attack of the poliovirus, survivors underwent a demanding rehabilitation program. They learned new ways to participate in physical activities and learned emotional coping techniques. Three coping styles that polio survivors used during the initial rehabilitation have been identified (Maynard & Roller, 1991). Men and women with mild disabilities often adjusted by “passing” among the nondisabled. Persons with more visible physical limitations played down their use of crutches or braces and magnified physical or personal strengths, thereby “minimizing” the apparent effects of the disease. Persons who used wheelchairs or ventilators faced architectural and attitudinal barriers and could neither pass nor minimize, but fully “identified” with their disability. Many identifiers became leaders of the independent living movement. Understanding these styles of adjusting to disabilities caused by polio can help survivors and health professionals cooperatively deal with its late effects.
The late effects of polio, the second part of the process surfacing decades later, can be complex and distressing as it may arouse painful memories that may interfere with the need to make major lifestyle changes. However, survivors often realize that changes, at their own pace, are manageable, and they use their original coping skills to successfully adjust a second time around.
Scheer and Luborsky (1991) have documented “the polio tradition of working hard to meet goals and surmount adversity,” and conclude that “the qualities learned and valued by polio survivors in the course of adaptation to their primary disabilities – determination, steadfastness, consistency, and problem-solving – are essential tools for life-building … .”
Excerpt from PHI’s “Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors.” © 1999