Living With Polio


Facing new functional loss is one aspect of the late effects of polio. While a positive focus is healthy and contributes to adjustment, to focus only on the positive, and to ignore the loss and its pain, separates one from his/her own experiences. Individuals need to adapt to, or grieve, loss. If grieving is incomplete, further psychological growth and development can be impaired. William Worden (1991) developed a practical approach to dealing with death based on four tasks to work on and for which an individual can take responsibility. The approach, which allows for individual style and pace, also can apply to losses from disability.

First, accept the reality of a loss. Some losses, such as death or job loss, are clear and unambiguous, but their reality may be hard to accept. Denial, such as thinking of the loss as temporary, shields the full impact of the loss. Acceptance takes time and is intellectual as well as emotional. When a loss is less defined, acceptance becomes even harder. With the original polio, the final outcome was ambiguous as function improved during recovery. With the late effects of polio, the loss is gradual; the extent of the disability unknown. Talking about the loss and putting it into words can make it easier to accept.

Second, work through one’s defenses and uncomfortable feelings to the pain related to grief. Identify and express the feelings related to the loss – sadness, relief, and the more difficult ones, such as anger, guilt, anxiety, and helplessness. Some avoid this task by not feeling. Buried feelings find other ways of expressing themselves. Anger can turn inward and cause depression or lowered self-esteem. Ignored feelings can contribute to substance abuse, stomach problems, skin irritations, or acting out behavior. Some individuals with disabilities demonstrate a “chronic sadness” that underlies much of their behavior and could be the result of their not working through their defenses, such as denial, to the painful feelings related to their grief.

It is important to identify and be in touch with one’s own feelings and to find individual ways to express them, for example, through keeping a journal, music, or art. Once identified and expressed, feelings must relate to some meaning. As Worden (1991) says, “Sadness must be accompanied by an awareness of what was lost; anger needs to be properly and effectively targeted; guilt needs to be evaluated and resolved; and anxiety needs to be identified and managed.”

The third task is familiar to polio survivors because it is the major focus of rehabilitation programs. Adjust to the situation; learn to live with what is left after disability. Loss due to the late effects of polio includes not only the physical and functional, but also the social – change in job status, minority (disability) group membership, and altered self-esteem. Individuals who struggled through life to maintain a nondisabled group identification and who now need crutches or a wheelchair are dealing with a loss greater than simple loss of function. Living with what is left might mean changes in priorities, self-concept, and less independence. Seeing a counselor or joining a peer support group may help in adjusting to the changed situation.

Finally, emotionally relocate that which was lost, and move on with life. Reinvest in life and get on with living, the way things are now. Do not get quagmired in the way things were; value the past, but move on to what is possible. Find new relationships or activities, and new ways of doing activities that are fulfilling.

While this approach focuses on practical tasks one can accomplish, some survivors may need to see a counselor to assist in accepting the late effects of polio.

Excerpt from PHI’s “Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors.” © 1999 

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