The Post-Polio Patient: Psychological Issues

by Margaret E. Backman, Ph. D.


Of the 200,000 to 300,000 persons who have survived polio, a significant number are now, after many years, beginning to experience a deterioration in strength, sometimes accompanied by pain and respiratory difficulties. The recurrence of symptoms reminiscent of the earlier illness can trigger emotional problems and regressive behaviors that are often misunderstood and interfere with treatment.

Polio survivors in this country are estimated to number between 200,000 and 300,000 (Laurie, 1980; Laurie, Maynard, Fisher, & Raymond, 1984; Roosevelt Warm Springs Institute for Rehabilitation, 1982), and at least 132,000 were struck with the disease during the 1952-54 epidemic alone. Now, decades later, many who felt they had overcome the illness and made their adjustments are beginning to experience increasing weakness and pain, the cause of which is yet to be fully understood. (Halstead & Wiechers, 1985; Laurie, 1980, Roosevelt Warm Springs Institute for Rehabilitation, 1982, 1983).

Typically a loss of strength occurs in muscles that may or may not have been weakened originally. The muscles most commonly affected, however, are those that recovered well from the initial attack, or were not affected at all, and have been used strenuously since (Laurie, 1980). The patient may also experience severe pain in the joints or a generalized aching resembling that of the flu. Headaches, inability to rest, and a profound fatigue are not uncommon. Although the symptoms may be experienced as happening quite suddenly, clinical observation suggests that they actually develop gradually.

As the extent and nature of the original disabilities vary, so do these later symptoms. Those with limited breathing reserve may now need mechanical assistance. If weight bearing has been continued, patients with even minor deformities or weakness of the spine or limb may develop painful degenerative joint disease or nerve compression. Weakened back muscles may result in severe scoliosis, necessitating surgery. Some who were able to walk without auxiliary devices now find themselves having to use crutches or a brace, while others may need a wheelchair. Persons using wheelchairs, who had the use of their hands and arms, may now experience a loss of function. After years of being, independent, some now find themselves depending on others to feed them, and mouthsticks or other such devices may he needed to perform routine tasks at home and on the job.

The Cause: Is There "Post-polio Syndrome?"

From 20 to 50 percent of polio survivors over 40 years of age are reported as exhibiting latent effects; it is expected that the percentage will increase as the population ages and physicians become more astute in their diagnosis (Halstead & Wiechers, 1985; Horowitz, 1985; Laurie 1980: Laurie et al, 1984). Some controversy exists in the rehabilitation community about the underlying causes of these latent symptoms, frequently referred to as the ``Post-polio Syndrome'' (Laurie et al, 1984). Some fear that this may be either a new illness or a recurrence of the polio virus, which has remained dormant these many years. Thus far no compelling evidence is available to support this latter effect. Some even question whether there is a Post-polio Syndrome: after all, a gradual weakening of muscles from aging can be expected, and the pain may he caused by musculoskeletal problems from the strain on poorly supported joints (Roosevelt Warm Springs Institute for Rehabilitation, 1982, 1983). There is, however, a growing consensus that the deterioration, although a result of the aging process, begins earlier in those who have suffered nerve damage and muscle weakness. Those having had acute polio present a constellation of symptoms that is beginning to he recognized as a clinical entity. One explanation is that the deterioration is due to the accelerated dropping out or death of the anterior horn cells, the motor cell bodies of the nerves that go to the voluntary muscles. Normally, the anterior horn cells slowly drop out when one reaches 60 years of age or older (Laurie, 1980). However, for those who had acute polio, this seems to be happening at a relatively younger age, 25 to 30 years after the initial attack, affecting those who are only in their 30's or 40's.

A related theory is that cells prematurely damaged by polio (or other trauma) are especially vulnerable to the aging process. Overuse of the unaffected muscles to compensate for physical loss can interfere with the metabolism of the remaining motor neurons. This compensation creates a progressively destructive cycle where the patient exerts greater effort, which exhausts some of the remaining neurons, so that the person tries harder, resulting in greater stress for the rest of the neurons.

Difficulties in Diagnosis and Treatment

Because of the success of the polio vaccines, few physicians today have had training or experience in treating polio patients Most health care providers arc unaware of the post polio syndrome and patients become frustrated and scared since they must search and search for help. Misdiagnosis is not uncommon; for example, in some cases patients have been diagnosed as having Amyotrophic Lateral Sclerosis (ALS, or Lou Gherig's disease) because of the similarity of symptoms.

Many post-polio survivors (particularly those with milder impairments) have avoided medical specialists for years either not needing care or having had their fill of it. Now, when faced with these new problems, they soon become aware that those they must turn to for help are operating in a new area and are not sure what to do. Both physician and patient can become frustrated and discouraged, and conflicts arise.

Conflicts Between Physician and Patient

Treatments may not be as successful as hoped for by both patient and physician. Muscles may be too weak for support, bones won't mend, operations may not be successful, and deterioration continues. The physician, out of feelings of impotence and frustration, may become defensive (i.e., avoiding the patient and not answering questions).

Although the available literature encourages post-polio patients to keep themselves informed, this same literature is filled with frightening prospects, making patients very anxious when going to medical appointments for fear of what they may be told. When questions are not answered directly, patients often become angry since they feel that information is being withheld or that the doctor really doesn't know how to treat their condition. The uncertainties of treatment and prognosis add to the stress that the patient is already under. Research to discover the cause and appropriate treatment is just in its beginning stages, and the accompanying psychological problems are only beginning to be recognized.

Psychological Issues

Most of the available published material has concentrated on the physical and demographic aspects of the post-polio syndrome, but little has been written about the emotional repercussions (Frick & Bruno, 1986). The present article focuses on the psychological concomitants of this syndrome.

Psychological Resistance

Compounding the emerging physical symptoms is that patients are now being told that the very treatment used years ago (i.e., to exercise as much as possible) may have exacerbated the present condition. Today, these same patients are being told to take it easy and to rest, not to exert themselves, to accept their lessening of strength and stamina.

Logically this advice may make sense, but emotionally such changes in life style are difficult to achieve, particularly when former patients have spent a lifetime believing what they were doing was good for them. Resistance to change is a natural reaction but, in this situation, even more resistance occurs since individuals are advised to curtail many pleasures and become more dependent on others. In addition, hope may be shattered and trust in authority shaken. Patients become aware that recent prescriptions are based on new untested theory, as were many of the prescriptions that were given years ago with such authority, but are now being questioned.

Thus, health care providers find patients avoiding treatment, minimizing their conditions, and disregarding advice - in effect, not wanting to become less active and more dependent, particularly when, in their mind, no one is really sure. Just treating the medical symptoms and expecting the patient to accept these new limitations without a struggle only compounds the problem. The effects of the recommendations need to be thoroughly recognized and understood. A reduction of activity can profoundly affect the person's role in the family and society. A patient may have to take early retirement; a mother or housewife may be forced to have others do her work for her; roles may become reversed between husband and wife, parent and child; social involvement with friends and family may have to be curtailed. And with what do they fill the void in their lives? How does the person regain psychological equilibrium? After years of not thinking of themselves as disabled, the new weakness and pain shakes their sense of self. The unknown course of the disease makes it further difficult to adjust, as these individuals do not know what they will be expected to adjust to.

The Reemergence of the Repressed

Although many of the psychological problems of post-polio patients are similar to those of other physically disabled groups, there is one major difference: the patient now experiences, both physically and emotionally, a recurrence of the disabling disease. The weakness, the pain, and the fear of never being able to walk are reminiscent of the earlier episode, causing the patient to relive much of the overwhelming emotional feelings that had been repressed (Frick & Bruno, 1986).

Weakened defenses

For years, these repressed feelings and associated memories had been kept in check by the psychological defenses of denial, avoidance, and isolation. For many, these defenses worked well, helping the individual cope with his or her disability. Yet many of these repressed memories and fears from childhood remained unexpressed and distorted in the unconscious. Now, however, under stress, the defenses begin to break down and the repressed feelings rise to the surface, overwhelming the individual. The fact that someone has gone through this before is no reason to assume that it will be easier the second time, or that the person will have a better understanding of the situation. On the contrary, having to relive the experience - an experience that the individual thought had been put to rest - reawakens anxieties and conflicts that he or she had been able to ignore for many years. As one patient exclaimed, ``I thought I had all this behind me; I don't know if I can go through it again.''

Understanding regressive behavior

As most post-polio patients were children or adolescents when they struggled with the disease and its aftermath, clinical observation suggests that many of the needs and behaviors that appear under the new stressful situation are reflective of childhood issues - a reliving of the earlier event. The emerging regressive behavior is often treated as an irritation by the busy physician, yet such behavior is not unexpected, and may be an attempt to regain equilibrium. Not only are the defenses not working, but many of the psychological issues are those that the patient had not been able to work through as a child. What the family, physicians, and rehabilitation personnel see are behaviors and ideation that, on the surface, appear excessive or unrealistic, but are in effect symptoms of the underlying emotional concerns, which cannot find appropriate release.

Returning to the use of a brace or wheelchair after having struggled to overcome the need for such aids 25 to 30 years before may activate long-standing emotional conflicts. Many of these conflicts center around issues of dependency, sometimes revealing themselves as angry outbursts at those the patient is closest to and whose help is now most needed. Fears of being restricted and trapped, of being, abandoned, emanating from the previous experience in hospitals and convalescent homes reemerge. Patients' complaints about not being able to swim, bicycle, or walk for any length of time may seem self-indulgent or unrealistic to others. ``After all,'' some say, ``it is little to ask, if such restricted activity will result in a slowing down of the deteriorating process.'' But what needs to be understood is that these desires are expressions of fears of what is to come: fears of not being able to walk or breathe.

Complaints about not being able to drive, for example, may be expressions of anxiety related to dependency and lack of control in one's life. Resistance to being put in a brace may on the surface appear unrealistic if such support is needed, but this resistance may be an expression of the person's fear of impending lack of mobility. Cosmetic complaints may be brushed aside by others as pure vanity, but vanity is often an expression of self-esteem - an important element for successful outcomes, both physical and mental.

Distrust of authority

Much of the conflict in dealing with the medical establishment revolves around earlier experiences of hospitalization. Patients were often not dealt with directly, they were allowed to exist with their fantasies of what was happening, or about to happen to them. A lack of trust developed, for example, when patients were told they would not be in the hospital for long, and then found themselves ``trapped'' in the hospital or convalescent home for six months or a year.

Related to this distrust are reemerging feelings of guilt and anger at parents, spouses or other significant people, who were experienced as having abandoned them, as having abnegated control to the medical staff, or having neglected them, possibly exacerbating the disease. The early experiences of others being ineffectual reawakens insecurities in the postpolio patient now trying to gain control in areas where there are many unknowns.

Bereavement Process

Persons with disabilities often go through an adjustment process that has been compared to that of the dying, with the physical deterioration constituting a symbolic or actual death of a part of the body (Dembo, Leviton, & Wright, 1956; Fink, 1967; Kubler-Ross, 1969; Livneh, 1985; Parkes, 1975; Shontz, 1975). For post-polio patients, the recurrence of symptoms may thrust them into the bereavement process once more, and this time the experience is intensified by the reemergence of memories and feelings long repressed. Their feelings are not unlike those of stroke patients when dealing with crises in their illness (Bucher, Smith, & Gillespie, 1984), or cancer patients who are experiencing a recurrence of the disease (Koocher, 1986; Koocher & O'Malley, 1981). Anger and guilt are common emotions that come to the fore during bereavement: now they may he experienced as confusing to patients who feel there should be no reason for them, since such feelings are from the past and should have been dealt with then (Lindemann 1981; Tucker 1984). Anger may he directed at their own fate, at themselves for not having followed medical advice, at parents for not having helped them enough, at family for not understanding their plight or at friends, for the pressure their very presence imposes; guilt may emerge over the anger felt at loved ones or over feelings that their own children's problems may have resulted from the polio, either directly or indirectly.

Recognition of one's own vulnerability and mortality surfaces again, triggering fear and panic. Psychoanalytic theorists stress the importance of the ego's awareness of the possibility of its own vulnerability and mortality (Livneh, 19S5). As part of the bereavement-adjustment process, the defense mechanisms of denial and repression mitigate against this painful awareness.

Social withdrawal

One stage in the bereavement process is social withdrawal, which may take the form of distancing from family and friends. Although going out and being with others may seem like a positive step in overcoming depression, for the post-polio patient, being with others may increase feelings of uncertainty, anxiety and self-consciousness. Having been the focus of so much scrutiny during the first bout with polio, many of these individuals now feel panic when anticipating social situations. Having been self-sufficient before, help is difficult to accept. The many questions that people ask often do not have ready answers and serve to remind patients that they do not know what is to happen to them. Thus, social interactions can he supportive, but can also be anxiety producing when the coping mechanisms, such as the defense of denial, are weakened

Friends, in turn, sensing the patient's mood are unsure of what to do or say. And in becoming more aware of the patient's disability they face their own feelings regarding vulnerability and mortality. These feelings set up what Siller (1969) calls ``interaction strain'': an uneasiness in the presence of disabled persons and an uncertainty as to how to deal with the patient's own discomfort and the discomfort of others feed upon each other, making the patient choose social isolation as a way of coping. Yet, in this isolation, the patient is prone to become obsessed with his or her present state, and thus sink further into depression.


Depression and sadness are normal reactions when a person's level of functioning is decreasing. Poor concentration, sleep disturbance, and decreased interest in activities may be symptomatic of the depressed state. Suicidal ideation may also be a reflection of the person's despair, growing out of the helplessness over the uncertainty of the future.

Psychological treatment of the depression may decrease suffering even if many of the physical symptoms still persist. The patient may have developed coping mechanisms that are no longer suitable; avoidance and denial may now serve to exacerbate problems that need attention. The patient may be ambivalent about psychological intervention, however, as the earlier experiences that will need to be discussed in therapy will themselves be experienced as painful. Combining psychotherapy with physical or occupational therapy is useful for developing better coping mechanisms (Laurie et al., 1984).

A therapist or rehabilitation counselor can play an important role, acting as a liaison to the medical personnel: helping them to understand the patient's behavior and helping the patient understand medical explanations, which are often misunderstood initially because of anxiety. Most patients see this professional interaction as positive, experiencing a certain amount of comfort that they are being taken care of. Protecting confidentiality is still of utmost importance, and patients should be involved in decisions about what may be shared with others.

Family therapy or couples therapy is often indicated. Group therapy with others who have had polio is often recommended as a way for the patient to learn about others' coping strategies and keep aware of new techniques and specialists (Laurie & Raymond, 1985). For some, being in a group and learning that the same problems are experienced by others can be reassuring. However, for others a support group or group therapy may actually increase their anxiety. Those who previously had milder cases of polio often avoid the group experience, particularly if those in the group have obviously more severe disabilities. Many of these persons have difficulty identifying themselves as ``handicapped'' or ``disabled'' and, in some cases, seeing persons with more complications makes them anxious about their own eventual prognosis

Summary and Conclusions

As more and more former polio patients enter middle age, what is now a newly recognized problem (i.e., progressive weakness and pain) is expected to become increasingly common. The physical and emotional needs of these patients are only beginning to be understood. Memories, conscious and unconscious, from the initial confrontation with the disease influence their current functioning. Having adjusted to whatever limitation that polio may have imposed on them, many of these patients now feel overwhelmed with the prospects of going through the process again. Compounding this feeling is the unknown course of the disease. Psychotherapists and rehabilitation counselors have a role to play in helping these patients deal with unresolved issues related to their earlier bout with polio and with their present condition, as well as serving as a liaison to medial personnel and the family.

Margaret E. Backman, Ph.D. is a clinical psychologist working in the area of health psychology. She has a private psychotherapy practice in New York City and holds an adjunct clinical faculty appointment at the New York University Medical School. Dr. Backman specializes in helping individuals and families cope with medical illnesses and physical disabilities. She has been working with people who have had polio for over 15 years and has written articles and given presentations about the psychosocial aspects of the late effects of polio. Reprinted with permission.

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