Multiple Sclerosis A Social-Psychological Perspective T. W. PULTON, MA

Many patients with multiple sclerosis experience strong feelings of alienation due to the nature of a disease with unknown etiology and largely ineffective treatment procedures. The familial and societal involvement in the process of alienation is discussed and some issues relating particularly to the institutional­ ized patient are identified.

Multiple sclerosis (MS), literally meaning "many scars," is a neurological disease which has been known for at least 150 years. Charcot, the French neurologist, was not the first to diagnose MS but he wrote one of the earliest, detailed descriptions of the symp­ toms. 1 Many of the observations that Charcot made nearly 100 years ago are still valid to­ day. The MS patient typically has some or all of the following symptoms: a staggering gait or perhaps the inability to walk, blurred or double vision, numbness or tingling sensa­ tions, halting or slurred speech, and prob­ lems in sphincter control. Although the etiol­ ogy of MS is still unknown, the disease proc­ ess is better understood. An electrical circuit analogy lends itself well to a simplified de­ scription of what is happening in the body. Most people easily grasp the notion that dirty electrical connections or poor switch con­ tacts interfere with the optimum efficiency of an electrical circuit. If the connections be­ come very bad or the insulation on the wires is lost, the electrical device simply quits

working. The same is true of MS. The partial degeneration of the myelin "chiefly in the white matter of the spinal cord, brain stem, brain and optic nerves, causes subsequent scarring which impedes or short circuits the passage of nerve impulses." 2 Because this scarring proceeds at different rates for every patient, MS becomes a particularly interest­ ing disease to examine from a sociological and a psychological framework. No two pa­ tients are afflicted in exactly the same way and yet this very lack of similarity in symp­ tomatology has forced patients to develop special types of approaches to their social world and their mental processes. One of the frustrating problems with which patients deal is the general lack of informa­ tion available to them about their disease. A large number of theories concerning etiology have been advanced and still more hy­ potheses continue to appear. Some of the better known causal theories include: heredi­ tary factors, a slow virus infection, and an immunological or an allergic reaction.

Mr. Pulton is associated with the Department of Psy­ chology, University of Victoria, Victoria, British Columbia, Canada V8W 2Y2.

The study of the epidemiology of MS has produced conflicting findings but the fact of the varying geographic prevalence of the dis­ ease must be confronted. 3 "In general, in the

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PHYSICAL THERAPY

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special communication

THE SOCIAL-PSYCHOLOGICAL COMPONENTS An issue, still being hotly debated, is whether social or psychological stress can lead to the onset of the first symptoms or contribute to the exacerbations experienced by those individuals who already have the disease. In referring to stress, McAlpine, a world authority on MS, has written: "Of its importance during the course of the disease, particularly as a cause of temporary exacer­ bations of symptoms, there can be no doubt." 5 Charcot wrote that many of his pa­ tients had experienced periods of "long-con­ tinued grief and vexation" 1 , and a study con­ ducted at the Montreal Neurological Institute revealed that "traumatic experiences pre­ ceded the onset of MS in 35 out of 40 pa­ tients." 5 Periods of prolonged emotional stress were also extremely common. Investi­ gations supporting the contributions made to the disease by social and psychological stress are so numerous that the connection

Volume 57 / Number 2, February 1977

cannot be ignored. 5-7 An Israeli study by MeiTal and associates found that "in 28 out of 32 patients the onset of symptoms ultimately leading to the diagnosis of MS was in con­ junction with a psychologically stressful ex­ perience." 7 In this study nearly all of the Is­ raeli patients had been confronted with per­ manent changes in their life styles which de­ manded adjustment. The relationship be­ tween stress and MS appears clear, but the challenge now is to use this information pro­ ductively. Because the cause of the disease is not known, those persons who are potential pa­ tients cannot be identified nor can attempts be made to eliminate stressful experiences from their lives. We can identify stressful situ­ ations for the diagnosed patients, but here there are also many obvious problems. Social and psychic tensions are facts of life. How much can one realistically insulate someone with MS from the daily grind? Patients in MeiTal's study reported that the emotional stress associated with many everyday experiences caused them severe setbacks. 7 Almost any extended marital or familial conflict can be potentially disrupting. Taking their cue from these and many other findings, some physi­ cians are now recommending that MS pa­ tients endeavour to live moderately tranquil existences. But this is difficult. The onset of MS usually occurs somewhere between 20 and 40 years of age. During these years the patient is often raising a family and establishing his career goals. Not only must the patient change his life style, but so must his family and other individuals who come into regular contact with him. A difficult rela­ tionship develops between the patient and the members of his family. If the patient has only had the disease for a few years, he or she may follow the fairly common pattern of deal­ ing with a chronic disability which features exacerbations and remissions of symptoms. When the patient is reasonably mobile, he may insist on his independence and may of­ ten worry the family by over-extending him­ self. Both the patient and his family should con­ sider the possibility that some day he may be totally dependent upon them. Bolding has suggested that the self-image of the patient

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northern hemisphere, the incidence of the disease decreases the nearer the equator is approached, and to some extent the same is true in the southern hemisphere." 3 Preva­ lence rates, which are the number of cases per 100,000 of the population alive on a given day, show this geographical distribution quite clearly. The rate of Northern Scotland at 58° N Latitude is 50, whereas the rate for New Orleans, at 30° N Latitude is only 6. 3 The incidence of the disease, which refers to the number of new patients per 100,000 in one year, shows a similar pattern. People living in Winnipeg, Canada, have twice the risk of ac­ quiring the disease as do persons in Southern Japan, but again the incidence is twice as high in Northern Ireland and in Denmark as it is in Winnipeg. 3 When the etiology of MS is finally discovered, the major directives will, in all probability, have come from the wealth of information provided by epidemiological studies. These studies have, for example, al­ ready clearly suggested "that the critical fac­ tors which determine the presence or ab­ sence of the disease are in the environment, rather than in the genetic constitution of the individual." 4

Mrs. J. was forced to give up her own work, which was not only a source of income, but an opportunity for social contact that she much enjoyed. Mr. J., a modest man, finds physical dependence hard to accept. He must call his wife two or three times in the night to turn him over, and he always greets her with an apol­ ogy. 9

THE PATIENT AT HOME AND AT WORK Multiple sclerosis often prevents the pa­ tient from carrying out his daily functions in the home. The family is well aware of the problem and must face not only the realities of the physical changes but sometimes the personality changes in the patient which are characteristic of the more advanced stages. A study of the children of persons with multiple sclerosis has revealed that living with this type of built-in tension may result in certain maladaptive reactions. These children fre­ quently "scored higher than children from homes without chronic illness, in body con­ cern, hostility, constraint in interpersonal re­ lations and dependency longings." 2 Not only at home but at work, the patient with MS faces special problems. Many em­ ployers are unwilling to keep on the payroll an individual whose health will be cyclical and perhaps deteriorative. Most physicians and social workers believe that "more people with MS may be capable of being self-suffi­ cient than was formerly believed." 10 Many pa­ tients with MS, for example, who have had the disease for 30 to 40 years are still only mildly disabled. A patient's earning potential 172

is far from destroyed with the first onset of the disease; an average pattern might be "one relapse every 2 or 3 years for the first 10 years, and one for every 5 years thereafter." 10 Of course, within the relapses some perma­ nent deterioration may be expected, but the point is that the average MS patient is totally employable for a number of years. The pa­ tient should be prepared to accept perhaps some salary adjustments as the disease pro­ gresses, and the employer should be willing to modify the job requirements to fit the pa­ tient's abilities.

THE PATIENT IN THE COMMUNITY As is true for anyone with a chronic disa­ bling disease, the patient with MS discovers that the community sometimes fails to pro­ vide the means whereby he or she can be­ come a fully functioning member of society. Persons confined to wheelchairs find numer­ ous architectural barriers to surmount. Many stores and public buildings have yet to de­ velop easy access for individuals in wheel­ chairs. Ramps are often unavailable, toilet stalls are too small, elevators are absent, and aisles are too narrow. The community de­ prives itself of an important segment of its population by restricting the handicapped. Many of the physically disabled could bring to their communities meaningful financial, cul­ tural and informational contributions. The community may similarly have forgotten the permanently institutionalized patient who, al­ though unable to leave the hospital, except with great difficulty, may be extremely intelli­ gent, alert, and interested in the world "out­ side." A study of a number of chronic patients with MS on hospital wards in England showed that "although two-thirds of the pa­ tients were capable of some handiwork," only one-third were given the opportunity to use their skills. Further, the investigators deter­ mined that nearly 20 per cent of the patients could have been helped to become more mo­ bile than they were. The researchers con­ cluded that "for the overwhelming majority of the mentally normal disabled, admission to chronic wards is regarded as a last resource ... , the end of personal freedom and the sense that no further plans will be made for them thereafter." 4 PHYSICAL THERAPY

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with MS is compromised "by the feeling that ultimately he will become a helpless, deval­ ued person, unacceptable in the eyes of the person(s) to whom he looks for his much needed support." 8 Bolding also found his pa­ tients acutely concerned about the possibility of future loss of somatic or intellectual func­ tion because of the progression of the dis­ ease. 8 Two unusual aspects of MS, the remis­ sions and the exacerbations, cause enor­ mous adjustment problems for the patient and the patient's relatives and close friends. Often, marriages cannot bear up under the added strain and divorce ensues. A recent article vividly describes the types of chal­ lenges a marriage partner must face.

THE PATIENT IN HOSPITAL

CONCLUSION The incidence of MS is so small that the general public finds it hard to become con­ cerned about this bizarre disease. McAlpine, recognizing how little the public knows about MS, strongly encourages physicians not to give the newly diagnosed patient the idea that "he is suffering from a mysterious disease about which nothing is known and for which there is no treatment." 5 The National Multiple Sclerosis Society has adopted what may be

Volume 57 / Number 2, February 1977

A PERSONAL NOTE The writer has had the signs and symptoms of MS for approximately 10 years, although the disease was probably present for a far longer period. Two of my children can never remember my being any other way but the way I am now; the oldest is quickly forgetting that I could once run and chase her, for she was very young then. Instead of being grate­ ful that my children now matter-of-factly ac­ cept my awkward steps and sedentary exis­ tence, I am frequently enraged and frustrated by my clumsiness and lack of mobility. For me, acceptance comes not with resignation but with indignation. REFERENCES 1. Charcot JM: Maladies du systeme nerveux. Paris, Delahage, 1892 2. Arnaud SH: Some psychological characteristics of children of multiple sclerotics. Psychosom Med 21:821,1959 3. Millar JHD: Multiple sclerosis: A disease acquired in childhood. Springfield, IL, Charles C Thomas, 1971 4. McAlpine D, et al: Multiple sclerosis: A reappraisal. London, E and S Livingstone Ltd, 1965 5. McAlpine D: Multiple sclerosis: A plea for a fresh out­ look. Brit Med J 1:475-480, 1957 6. Philipopoulos GS, Wittkower ED, Cousineau A: The etiologic significance of emotional factors in onset and exacerbation of multiple sclerosis. Psychosom Med 20:458-474, 1958 7. Mei-Tal V, Meyerowitz S, Engal CT: The role of psy­ chological process in a somatic disorder: Multiple sclerosis. Psychosom Med 32:67-86, 1970 8. Bolding H: Psychotherapeutic aspects in the manage­ ment of patients with multiple sclerosis. Dis Nerv Syst 21:24-86, 1960 9. Anonymous: The forgotten: A man with multiple scle­ rosis. Brit Med J 2:102, 1971 10. Brown JR: Recent studies in multiple sclerosis: Infer­ ences on rehabilitation and employability. Mayo Clin Proc 44, October: 758-765, 1969 11. Pulton TW: Attitudes toward the physically disabled: A review and a suggestion for positive attitude change. Physiotherapy (Canada) May: 83-88, 1976

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Patients with MS who live in city hospitals have to cope with their own unique problems. To begin with, there is frequently a break­ down in their primary groups. Often, this oc­ curs because one individual (a spouse), or a number of individuals, refuse to adapt to the problem of chronicity. Patients report that they can no longer engage in useful social interactions with some members of their fam­ ily because these members become nervous and uneasy in their presence. 1 1 Divorce is quite common and can be better understood if one contemplates the dramatic role-con­ flicts that occasionally develop; from bread­ winner to retiree, for example, or from wife and mother to invalid. Medical personnel also experience feelings of frustration and inade­ quacy when dealing with these patients. The disease does not lend itself to intense thera­ peutic intervention and subsequent normal functioning. Treatment rarely results in marked improvement and the staff under­ standably feel unrewarded for their efforts. Institutionalized patients lack not only good opportunities for familial social interac­ tion, but many have extremely infrequent chances for contact with normal persons. Be­ cause these patients tend to become de­ pressed, the attending physician may pre­ scribe mood elevators which can provide a temporary solution. A dynamic approach, now utilized by some institutions, is the in­ volvement of the patient in many aspects of the administration of the hospital. Such a philosophy helps the patient to feel useful and important and can result in less depend­ ence on the anti-depressants.

the most positive approach. They posit that until the public knows about the disease and understands the MS patient, funds for re­ search will be difficult to obtain. Perhaps more importantly, the society contends that by educating the public about MS and other chronic crippling diseases both the patient and the community are served because an informed public finds social interactions to be far more meaningful, and the afflicted pa­ tient finds great comfort in knowing that there now are people "who understand."

Multiple sclerosis: a social-psychological perspective.

Multiple Sclerosis A Social-Psychological Perspective T. W. PULTON, MA Many patients with multiple sclerosis experience strong feelings of alienation...
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