Post-Polio Health Care Considerations for Families and Friends

Post-Polio Health International


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III. Late Effects of Polio: The Psychosocial

Is your family member struggling with finding out that he or she has PPS? Does he or she appear to be in denial about what seems to you to be obvious changes in his or her functioning? Many polio survivors have difficulties adjusting to new disabilities. Some people with PPS find that they are now reliving their childhood experiences with polio and that can be traumatic and even terrifying.

Because of the relatively small number of polio survivors, many physicians see very few, if any, and know very little about PPS. Some still believe that the condition is only in their patients' heads. People with PPS often depend on their own resources to help them cope with this condition, because there is a lack of proper medical and psychological advice.

Fortunately, PPS continues to gain attention in the medical community. A growing number of health care professionals understand PPS and can provide appropriate medical and psychological help. In addition, there are PPS support groups, newsletters and educational networks, such as Post-Polio Health International, that provide up-to-date information about PPS while offering individuals the knowledge that they are not alone in their struggle.

A. Polio: The Experience

Many polio survivors have never shared their experiences with anyone, even their children. You may not have known that your parent even had polio until he or she began to experience the late effects. Why would your family member never have talked about something that seems so important?

The polio experience was a difficult one. Polio carried a stigma similar to HIV/AIDS in that others were afraid to associate with children with polio and their households. It was common for polio survivors discharged from the hospital or rehabilitation to be discouraged from talking about what they had experienced. If they were able to pass as non-disabled, polio soon faded from their awareness. Many didn't feel that polio had really affected them very much at all until they developed PPS.

However, it did affect them. Acute polio was an extremely painful disease. Along with the pain, the patient would have a high fever and become unable to move parts or all of his or her body. He or she may have developed difficulty in breathing, and even been placed in an iron lung. Children and adults who were hospitalized and contagious were kept in isolation from family, and even when rehabilitating allowed few visitors.

Professionals thought young children did not need an explanation of what was happening to them. Young polio survivors were confused and afraid, sometimes believing they had done something bad to make their parents leave them. There were few mental health professionals on polio wards to help patients deal with their emotions, and those who did do such work didn't acknowledge the psychological effects of the illness.

The experience, of course, affected children in many ways. For some, especially those who had polio before the age of 4, it became hard to trust and connect with others. Some became mistrustful of doctors and medical treatment. Certain sights, sounds or smells may bring back the polio experience years afterwards.

When it was time to go through rehabilitation, polio survivors were encouraged to work as hard as they could, often pushing themselves past the point of exhaustion to regain as much mobility as possible. They learned to do whatever they could to function in a society that would make no accommodations for their disabilities. Wherever possible they were encouraged to give up braces and crutches as soon as they were able. Essentially, the message was that if they worked hard enough they could be successful at whatever they wanted to accomplish.

Polio survivors, especially the youngest ones, often returned to the hospital for surgeries for many years afterwards. Some children spent every summer in the hospital having "corrective" surgeries that often did little to improve their functioning. Many came to dread summer. Some felt they were in constant need of "correction" and that they were never good enough as they were.

Polio survivors often became stubbornly independent because of these experiences. They learned to be self-reliant. They exercised and exercised out of a belief that doing so would allow them to preserve their abilities. For many, PPS has felt like a betrayal, because what was helpful then has turned out to be harmful now.

More ...

Emotional Bridges to Wellness (Post-Polio Health, 2001)

A Guide for Exploring Polio Memories (Post-Polio Health, 2002)

Improving Quality of Life: Healing Polio Memories (Post-Polio Health, 2002)

B. Models of Disability/Identity Issues

After polio, survivors learned to cope with their disabilities. Researchers identified three coping styles that polio survivors used during the initial rehabilitation. Men and women with mild disabilities who could give up their braces and crutches could "pass" as nondisabled. Persons who couldn't do this played down their use of crutches or braces and magnified physical or personal strengths, thereby "minimizing" the more obvious effects of the disease. Persons who used wheelchairs or ventilators faced the architectural and attitudinal barriers of the times. They couldn't pass nor minimize, and so fully "identified" with their disability. Many identifiers became leaders of the independent living movement that resulted in changes in society, including the passage of the Americans with Disabilites Act (ADA).

How your family member deals with PPS depends on how they coped with their original polio. Identifiers don't question who they are now even though they are distressed by new disability. The changes brought on by PPS distresses mostly minimizers and passers. They may experience a sense of being a different person now, and may have to deal with what it means to be a person with a disability. For some, counseling or psychotherapy can help with these concerns.

C. Coping with Stress and Physical Changes

Is your family member having trouble coping with PPS? Individuals who are coping well focus on what they can do, rather than on what they cannot do, and play an active role in their lives, rather than respond as passive victims. They participate in areas of life seen as worthwhile and meaningful. They may have problems, but they are not overwhelmed by them.

People who are coping well appreciate their accomplishments and do not deprecate them because they do not meet some "normal" standard. They participate in valued activities and enjoy doing so. When they have problems, they solve them by making changes in their physical and social enviroments, such as eliminating architectural barriers in their homes and making new friends. They do not wait for a "cure" to fix everything.

To cope well with increased limitations, polio survivors may need to make important realistic value changes. They cannot deny their disability. Persons who successfully cope with their disability enhance their ability to change and to maintain relationships.

The late effects of polio 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. They can use their coping skills to adjust.

Working hard to meet goals and surmount adversity are characteristics of the "polio tradition." Your family member has coped with many difficult life experiences. With support, he or she can cope with these new challenges.

D. Relationships: Families and Friends

As family members become more disabled, they may become more isolated from you, other family members and friends. They may be less able to attend functions or engage in activities. Others in your social circles may not now how to deal with a person with a disability. If your parent has cognitive changes, this makes communication harder. Polio survivors' independence can also pose challenges for those around them.

Everyone needs support from family and friends. If you can help loved ones keep their relationships, and even find new ones, you will help them to have the best possible quality of life. Offer to help them find ways of getting together with friends and family, such as using senior or paratransit services, or provide rides yourself. Encourage them to have friends or family over. On the other hand, help your family member use other means of connecting, such as the telephone or computer. Aged parents might enjoy getting out to the local senior center. There are many activities for all interests and usually transportation. Support groups for PPS or other issues might help them feel less isolated.

Every relationship is unique, but for any relationship to succeed, both individuals will need to cope with any disability. This requires a realistic acceptance of the disability with an emphasis on what one can do, rather than one what one cannot do.

Caring for an aging parent or spouse can strain a relationship. Here are some suggestions on how to keep a relationship healthy.

  • Accept yourself and your family member. He or she is probably not going to change at this time of life.
  • Be actively concerned with each other's growth and happiness.
  • Commit to the relationship and to the other person.
  • Communicate clearly with each other.
  • Deal with feelings.
  • Provide freedom and time away from each other.
  • Be realistic about demands on each other.
  • Be flexible and adaptive in confronting new challenges.
  • Be prepared to accept new roles.

If you are having difficulty with a family member or your role as caregiver, or if these idease bring up new issues, seek professional help. Support groups for caregivers are available and can help family feel less isolated.

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