.I&. SC;. Med. Vol. 29. No. 7, pp. 793-798, 1989 Prmted in Greai Britam. All rights reserved

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LOVE, SELF-ESTEEM, AND MULTIPLE SCLEROSIS

ANTHONY WALSH and PATRICIA ANN WALSH

Departments of Sociology, Anthropology, and Criminal Justice, Boise State University, Boise, ID 83725. U.S.A.

Abstract-Multiple sclerosis (MS) is a progressive chronic disease which generally appears in early adulthood. The debilitating symptoms of MS can have adverse effects on the sufferer’s self-esteem, a vital coping resource for sufferers of chronic diseases. This study explores the effects of positive affect and social isolation+onceived broadly together as love-on self-esteem. We found that love was the most powerful predictor of self-esteem, followed by attitude stage, number of years since diagnosis, social class, and physical restriction.

Key words-multiple sclerosis, love, self-esteem

INTRODUCTION

Multiple sclerosis (MS) is a progressive disease ofthe central nervous system characterized by exacer- bations and remissions. While it is not usually fatal, it can be seriously disabling both physically and psychologically. The symptoms of the disease vary greatly according to the site of the sclerotic lesions. Lesions in the spinal cord produce such symptoms as loss of sensation in the limbs, weakness, loss of fine motor coordination, partial paralysis, and bowel and bladder dysfunction. Lesions in the cerebellar lead to vision, speech and gag reflex problems. Usually occurring later in the progression of the disease are lesions of the cerebrum. Lesions in this site effect the patient’s thinking and memory patterns. It is not difficult to agree with Matson and Brooks [ 1] that the manifestation of such symptoms can seriously affect the image a MS patient has of his or her self.

Matson and Brooks [ 1] found a positive self-image to be the best predictor of adjustment to MS. The self-image, or self-esteem, is that measure each of us has in our ‘mind’s eye’ about our worth and dignity as human beings. If that measure of our worth is strong we are better able to cope with the obstacles life puts in our way. As Combs, Avila and Purkey put it: “A positive view of self provides a great inner strength from which a person may deal more effectively with the exigencies of life. Whatever makes the self smaller or meaner, on the other hand, under- mines confidence and produces fear and withdrawal” [2]. We reason from this that the symptoms of MS can make ‘the self smaller’, and that this effect can lead to social isolation of the patient. We also reason that the effects on self-esteem wrought by the symp- toms of MS can be counteracted by warm inter- personal relationships with caring others. The present study builds on the work of Matson and Brooks [l] to explore the determinants of self-esteem among MS patients.

Lore and self-esteem

William Glasser has asserted that all human beings have two basic psychological needs: the need to love

and be loved and the need to feel worthwhile. He goes on to describe how these needs are intimately con- nected: “Although these two needs are separate, a person who loves and is loved will usually feel that he is a worthwhile person, and one who is worthwhile is usually someone who is loved” [3]. Taking this statement as our theoretical guide, we hypothesize that love will be the strongest predictor of self-esteem among MS patients. We define love as “the need to receive and bestow affection and nurturance, to be given and to give assurances of value, respect, and acceptance” [4].

Studies of the influence of love or love deprivation have been conducted across a wide variety of disease syndromes, e.g. psychosocial dwarfism [5,6], cardio- vascular disease [7,8], and immune system suppres- sion [9, lo]. This body of research literature is supportive of Freud’s insight regarding the relation- ship between love and illness: “A strong ego is protection against disease, but in the last resort we must begin to love in order that we may not fall ill, and we must fall ill if, in consequence of frustration, we cannot love” [I 11.

We are not concerned with love deprivation as an etiological factor in the onset of MS in this paper, although some virologists have suggested that emo- tional stress may increase susceptibility to microbial infectious diseases [ 121. Further, the psychoneuro- immunological literature [9, IO] informs us that for illnesses in which immune system response is import- ant, as is the case with MS, stress may impair cell-mediated immunity. We are concerned more with love as an important factor in the development of a ‘strong ego’ as a mechanism for coping with disease rather than as a ‘protection against disease’. As far as we are aware, no previous study has explored the affect of love on self-esteem among chronically ill patients.

We have spoken of love as a function of receiving various assurances. Of course, to receive such assur- ances the patient must be in frequent contact with those who can provide them. McIvor, Riklan and Reznifoff [13] found degree of perceived social sup- port to be the best predictor of coping (as measured

793

794 ANTHONY WALSH and PATRICIA ANN WALSH

by depression levels) in MS patients. Maintaining this contact can be problematic, for every sufferer of a chronic disease is faced with multiple problems of living. In addition to the obvious problems of simply getting about, managing medical regimens, and re- organizing one’s time to meet these demands, chronic disease can lead to social isolation. Social isolation may result from the withdrawal of friends and rela- tives from the sick person, either because of the sick person’s special needs, demands, and restricted ability to interact with them as before, or because of what Goffman [14] has termed the ‘stigma’ of the chronic- ally ill. Social isolation may also be patient-initiated. Patients may “leave circles of friends whom they feel might now be unresponsive, frightened or critical [Goffman’s stigma] and move to more sympathetic social terrain” [15]. Thus, social isolation, coupled with objective reminders of limited physical capacity, can have a negative affect on the MS patient’s self-esteem by limiting his or her access to sources of love.

The vicissitudes of MS, characterized as it is by frequent exacerbations and remissions, may require frequent analysis and reanalysis of the image one has of oneself. If the patient is experiencing a long period of remission, or seldom, if ever, requires a walking aid, his or her self-esteem may not be adversely effected. On the other hand, a severely dependent patient who is confined to a wheelchair or who is bedridden may experience a significant loss of self- esteem regardless of the level of love received.

However, as Wright [I61 has pointed out, we should not over simplify the connection between physical impairment and psychological maladjust- ment by positing an unambiguous linear relationship between the two. Matson and Brooks [I] point out that a healthy acceptance of the condition may allow the afflicted person to face the disability without devaluating his or herself. A healthy reevaluation of the self may even be productive of enhanced self- esteem despite the disability. One common phenom- enon, that of over-compensating, is pointed out by Strauss [15]. An attempt to ‘over’ compensate for a disability may result in actualizing potentials which the patient did not realize existed. In other words, adapting to chronic diseases is not simply a linear function of activity restrictions, it is also a ‘frame of mind’ issue.

Matson and Brooks [I] have described a model for the adjustment to adult chronic illness based on interviews with MS patients. Their model is based on Kubler-Ross’ [I71 ‘stage’ model of death and dying. There are four stages in the Matson-Brooks model: denial, resistance, affirmation, and integration. They see each successive state as being more psycho- logically healthy than the previous stage. Given the vicissitudes of MS itself, patients may move back and forth along this adaptation continuum with remissions and exacerbations of symptoms.

An alternative strategy explored in Schneider and Conrad’s [I81 study of epileptics is that of ‘coming out of the closet’. They assert that it is the patient’s desire to hide their stigmatized condition which leads to social isolation and loss of self-esteem. Using the obvious gay metaphor, they assert that self-affir- mation is achieved by ‘coming out’ and self-disclosing

to others. Those who adopted this strategy, who were able to talk about their epilepsy, their fears, concerns, and hopes, developed a better feeling about them- selves. This points to the positive contribution that can be made by social support groups for sufferers of chronic diseases.

The present study is an attempt to account for variance in self-esteem among MS patients. Based on previous studies, the assumption is that self-esteem is primary as a coping resource for those struggling with chronic disease. We hypothesize that love, as we have broadly conceived it, will have the greatest impact of self-esteem in a multiple regression model. Other variables determined by previous research to impact of coping among MS patients will be entered into the model, with only those variable statistically sig- nificant at <0.05 being retained.

METHODS AND PROCEDURES

The sample

The sample consists of I35 MS patients residing in various locations throughout southwestern and southeastern Idaho. This number represents a 67.5% return rate of 200 questionnaires sent to MS patients whose addresses were obtained from the patient list of the Boise chapter of the National Multiple Sclerosis Society. This is considered a very high response rate for research of this kind, and is high enough for us to reasonably conclude that respondents and nonrespondents are similar enough to assume the absence of serious biases [ 191. This rate was probably achieved because one of us (Patricia Walsh) identified herself as the MS resource person for the VA in this area of Idaho, and because one of the stated purposes of the study was to identify the needs of MS patients in the state. A control group of 118 students at Boise State University was used for comparison purposes. In an attempt to approximate the mean age of the MS patients, we only used students in the control group who were 25 years of age or older.

Measuring instruments

Our measure of self-esteem is Rosenberg’s [20] Self-Esteem Scale. A reliability coefficient of 0.831 is reported for this scale [21]. The reliability coefficient computed from our data was found to be 0.868.

Love is measured in two different ways. Our first measure is a direct one using Miller’s [22] Positive Affect Scale. This six-item scale asks respondents to check the number of people with whom he or she has ‘fairly regular and frequent contact’ who (1) show appreciation of you, (2) make you feel that they admire you very much, (3) show understanding and acceptance of you, (4) act in ways that show they sincerely like you, (5) seem to really care about you, (6) seem to really love you. The items comprising this scale cohere well with the definition of love offered earlier. The Positive Affect Scale has been used in at least two other social psychological studies of chronic disease states [8, 231. The reliability coefficient computed from our data was 0.907 for this scale.

Our second measure of love is Neal and Groat’s [24] Social Isolation Scale. This is an indirect measure

Love, self-esteem. and multiple sclerosis 795

Table I. Stepwise regression model predicting self-esteem for MS patients and

non-MS oatients

Variables

MS/control group

Positive affect

Social isolation

(Constant)

h SE B I Sig.

6.00 0.66 0.450 9.0 o.oooo

0.70 0.1 I 0.345 6.2 0.0000

-0.39 0.07 -0.321 -5.8 0.0002

29.51 3.31 8.9 0.0000

Adjusted R2 = 0.409, F = 59.10. sig. 0.0000. N = 252

of love. The assumption is that reported feelings of social isolation indicate that the respondent has fewer opportunities to experience the support and affection of others, although he or she may be the recipient of both on occasions. We have defined love as the need to both receive and to give affection and nurturance, as assurances of value, respect, and acceptance. Social isolation, in addition to limiting opportunity to receive love, also limits opportunity to bestow it. Zeller and Carmines [21] report a reliability co- efficient of 0.774 for this scale. Our data yielded a coefficient of 0.782.

In addition to these scales used in prior research, a number of other measuring devices designed specifi- cally for this study were used. We sought to deter- mine the level of each patient’s level of physical restrictiveness by asking him/her to indicate on a seven-point scale if he/she uses ‘no walking aid, occasionally uses, frequently uses, or always uses a walking aid, uses a wheelchair, is sometimes bed- ridden, or always bedridden’. Few responses in some categories led us to recode this variable as (1) ‘no walking aid’, (2) ‘occasional, frequent, and always use walking aid’, and (3) ‘uses wheelchair’, and ‘some- times or always bedridden’. A preliminary report assessing self-esteem levels among the categories of physical restriction is contained in Walsh and Walsh [23].

We also sought to determine each patient’s adjust- ment to the disease using the Matson-Brooks stages of denial, resistance, affirmation, and integration. This was accomplished by asking each subject to circle one of four statements which best describes his/her present attitude toward the illness. These statements were: (1) ‘It’s difficult to accept that this is happening to me. It just can’t be’ (denial). (2) ‘I’m going to fight this thing. I won’t let it get me down’ (resistance). (3) ‘I’ve come to terms with my MS. What else can I do?’ (affirmation). (4) ‘I know it’s there. but I don’t think much about it’ (integration).

Other variables such as MS support group mem- bership, social class. number of years since diagnosis,

marital status, and frequency of contact with family members are also included.

RESULTS

MS patients OS control group

We first explored mean differences between the MS group and the control group. The average age of the MS group was 45.5, and average age for the control group was 35.9 (t = 5.38, P < 0.0001). The control group scored significantly higher on self-esteem (means of 40.0 and 35.8; t = 5.38, P c 0.0001). The MS group scored higher on positive affect (means of 20.8 and 19.3; t = 2.45, P < 0.02), and lower on social isolation (means of 21.2 and 23.2; f = 2.04, P < 0.05). Thus, while MS patients perceived them- selves to be the recipients of more positive affect and to. be less socially isolated, they had significantly lower self-esteem.

Table I presents a model regressing self-esteem on social isolation, positive affect, and the MS/control group dichotomy. As expected from the t-test results, holding positive affect and social isolation constant increases the difference in self-esteem between the two groups from the 4.3 point difference noted in the t-test to 6.0 points here. Being a MS patient is a more powerful predictor of self-esteem than either positive affect or social isolation. It does seem that MS brings with it a loss of self-esteem but, at least in comparison to a group of older college students, not withdrawal from sources of love. We now examine the deter- minants of self-esteem among MS patients only.

MS patients only

Table 2 presents a matrix of zero-order Pearson correlations between all pairs of variables of major interest to the study. We note that positive affect has the strongest correlation with self-esteem (the more the positive affect the higher the self-esteem). Social isolation is the next strongest (the higher the social isolation the lower the self-esteem), followed by

Table 2. Zero-order correlations (r) of major variables (MS patients only)

Variables (X2) (X3) (X4) (XS) (X6) (X7) (X8) (X9)

Self-esteem (Xl ) -0.53* -0.18: -0.06 -0.33. 0.35’ -0.21t 0.56’ 0.03

Social isolation (X2) 0.05 -0.17: 0.29* -0.2st 0.40. -0.47’ -0.23t

MS member (X3) group 0.22t 0.20: 0.15 -0.26t -0.03 -0.15

Years smce diagnosis (X4) 0.15 0.22t 0.02 0.10 0.05

Degree of physical resrrlction (X5) -0.16 0.03 -0.02 -0.03

Attitude (X6) stage -0.29. 0.19: 0.14

Farnil! contact (X7) -0.19: -0.10 Positive affect (X8) 0.12 Soaal class (X9)

Coding: self-esteem. interval: social isolation. interval: MS group member, 0 = yes. I = no; years since diagnosis, interval; years since

dqnosis. interval: degree of physical restriction. 0 = no walking aid. I = uses walking aid, 2 = wheelchair or bedridden; attitude stage,

0 = denial. 2 = fight. 3 = acceptance. 4 = integration; family contact, 0 = daily. I = less than daily; positive affect. interval. l P <O.OOl. tP <O.OI: :P co.05.

796 ANTHONY WALSH and PATRICIA ANN WALSH

attitude stage, physical restriction, and degree of integration stage-who did conform to our expec- contact with close family members. The number of tations-( 14.5 years). Thus. integration does appear years since diagnosis and social class have no statisti- to be a function of duration of disease, but only after cally significant affect on self-esteem. a number of attitudinal ups and downs.

The self-esteem means for the three levels of physical restriction are: no walking aid = 39.0, walking aid = 34.7, and wheelchair/bedridden = 34.2 (F 2,132 = 7.6, P < 0.001). The Tukey HSD test revealed that the no walking aid group differed significantly at ~0.05 from the other two groups but these two groups did not differ significantly from one another. The Cochran C test for homogeneity of variance revealed no significant heterogeneity. We note that MS patients who used no walking aid had a mean self-esteem score which only differed from the control group mean by 1 point. It would seem that significant loss of self-esteem occurs only when one’s activity is restricted and is accompanied by visible evidence of the disease.

Not surprisingly. degree of contact with close family members and positive affect have the strongest associations with social isolation. Degree of physical restrictiveness has the next strongest association with social isolation-the greater the physical restriction the greater the social isolation (r = 0.29. P < 0.01). We also note that those who are lowest in the Matson-Brooks attitude stages are the most socially isolated, means = 26.5, 21.5, 21.2, and 19.4, respect- ively. It is difficult to say, of course, whether social isolation affects one’s attitude toward the disease or whether one’s attitudes affects the frequency of social interactions with others. The causal direction could be in one direction for some patients, and in the other direction for other patients.

These findings help to illuminate the contradictory findings of Matson and Brooks [I] and Zeldow and Pavlou [25]. Matson and Brooks found that self- concepts become more positive as the disease worsens. Zeldow and Pavlou, using more sdphisti- cated techniques (OLS regression), came to the oppo- site conclusion. The present study supports the findings of Zeldow and Pavlou [25].

The correlation between MS support group mem- bership and self-esteem indicates that group members do have higher levels of self-esteem. Mean self-esteem for group members was 36.7, and for nonmembers it was 34.4 (F 2,132 = 4.3, P < 0.05). However, group members had been diagnosed as having the disease for a significantly shorter period of time (mean number of years of 8.1 vs 12.6; t = 2.8, P < 0.01).

Membership in an MS support group is most highly related to frequency of contact with family members, i.e. those who have contact with family members are significantly more likely to belong to a support group. Finally, we note that the least physi- cally restricted patients are the most likely to be members of a MS support group. This is reasonable simply because severe restriction precludes going out to such meetings.

The self-esteem means for the Matson-Brooks attitude stages were: denial = 25.8, resistance = 35.5, affirmation = 36.2, and integration = 38.3 (F 3,131 = 10.9, P < 0.0001). The Tukey test revealed that the self-esteem mean for those in denial differed from each of the three other groups, but the means of these three groups did not differ significantly from one another. Once again, no significant heterogeneity of variance was observed.

The only two remaining significant correlations that we have not yet addressed is the -0.31 corre- lation between attitude stage and frequency of con- tact with family members. This would indicate that frequent interaction with family members has a posi- tive influence on one’s attitude about the disease. The -0.20 correlation between frequency of contact with family members and positive affect is intuitively reasonable. In short, an examination of the corre- lation matrix supports the position that social sup- port is a very important variable in maintaining a healthy attitude about oneself in the face of chronic illness.

We had expected to see a monotonic relationship between attitude stage and number of years since diagnosis. That is, we expected those who had been diagnosed the shortest period of time to be most likely in the denial stage and those who had been diagnosed the longest to be in the integration stage. However. those in the resistance stage had been diagnosed the shortest period of time (7.9 years), followed by those in the acceptance stage (9.4 years), the denial stage (9.8 years), and finally, those in the

We now turn to multiple regression to assess the unique effect of each of the variables on self-esteem. We entered all measures of social support (social isolation, positive affect, MS group membership, frequency and contact with family members) into the regression equation with degree of physical restric- tion, attitude stage, number of years since diagnosis, and social class. Table 3 presents the results of this regression. Only family contact failed to enter the regression equation. We note that positive affect has the greatest impact on self-esteem. Thus, the more individuals are assured that they are respected, appreciated. accepted, and loved, the more value they

Table 3. MAJOR variables regressed on self-esteem

Variables h SE B ’ Sig.

Positive alkt 0.80 0.14 0.399 -5.8 0.0001 Social isolauon -0.36 0.09 -0.287 -3.8 0.0002 Atreude stage 1.87 0.46 0.260 4.0 0.0001 Physical restriction -1.17 0.49 -0.158 - 2.4 0.0085 MS support group - 1.95 0.83 -0.150 - 2.4 -0.0197 Social class -0.25 0 IO -0.147 -2.3 -0.0145 Years diagnosed - 0.09 0.04 -0.147 -2.3 -0.0235 (Constant) 29.83 4.80 6.2 0.0000

Adjusted R’ = 0.528, F = 22.42, sig. = 0.0000. N = 135.

Love, self-esteem, and multiple sclerosis 797

will place on their self-worth. Social isolation has a significant effect on self-esteem regardless of levels of positive affect.

With these results on hand we combined the indi- cators of love as it is defined here into a single variable (positive affect - social isolation) to create a more parsimonious model. Table 4 presents the results of this regression. It is observed that love is by far the greatest determinant of self-esteem levels. The relative importance of this variable vis-a-vis the remaining statistically significant variables can be assessed by taking the ratio of the squares of their respective standardized beta’s The square of 0.609 is 0.371, and the square of the standardized beta for attitude stage, the next most powerful predictor of self-esteem, is 0.063. Thus, love accounts for approx. 5.9 times as much of the variance in self-esteem as attitude stage.

We cannot know the causal direction of attitude stage and self-esteem. It is just as likely, of course, that those patients who enjoyed high levels of self- esteem prior to the onset of the disease have a better attitude toward it as it is to posit that one’s attitude increases self-esteem. We do not possess the longi- tudinal data necessary to untangle this relationship.

The findings that number of years since diagnosis and degree of physical restriction exert a negative influence on self-esteem is intuitively reasonable and coheres with our expectations. We are mildly sur- prised that physical restriction is of relatively little importance when the influence of the other variables are adjusted for, however. The significant negative impact of social class is also somewhat of a surprise since previous research informs us that almost in- variably higher social class is associated with higher self-esteem [26]. We might speculate that higher social class denotes higher expectations of the self devel- oped over a long period of time. With many of these expectations perhaps thwarted to some extent by MS, the psychological impact of the disease for such individuals may be more extreme than for those with lower initial expectations of the self.

DISClJSSlON

It was refreshing, and surprising, to find that MS patients perceived themselves to be the recipients of more positive affect and to be less socially isolated than members of the control group. Nevertheless, they did have significantly lower self-esteem than the control group. This would seem to indicate that simply the brute fact of suffering from MS has the effect of lowering self-esteem. In general terms, how- ever. the results of this study support the idea that coping with chronic illness is not simply a matter of

medical regimens and the objective severity of the symptoms. As we are again reminded by Combs, Avila and Purkey [2], self-esteem is a variable of the utmost importance in dealing with the adversities of life in a healthy fashion. Thus, whatever contributes to the maintenance or the increase of self-esteem is beneficial to us.

Love is such a mechanism. As the philosopher Baruch Spinoza once put it, “love is the increase of self by means of other”. We saw that positive affect and social isolation, as mirror images of the under- lying principle of love, were by far the strongest predictors of self-esteem. Entered into the regression as a single variable, these two indicators of love uniquely accounted for 37.1% of the variance in self-esteem. Thus, those who are surrounded by caring others gather unto themselves the inner strength, as provided by high self-esteem, to cope with this pernicious chronic disease.

Our findings also support the Matson-Brooks model of adjustment. Those who deny or resist the disease are likely to withdraw from social situations in which the symptoms may become embarrassingly evident. Those who are most accepting of the reality of the disease and who are able to integrate the reality of it into their self-concepts have higher levels of self-esteem. This level of integration, however, takes many years to attain. One’s attitude about the dis- ease, then, tends to go a long way in restoring self-esteem, although we acknowledge the possibility that the causal direction could run the other way.

Unfortunately, we noted that the degree of physical restrictions exerts an independent effect of self- esteem. Those MS patients who did not use any form of walking aid had a mean self-esteem level which was only one point lower than that of the control group. Quite naturally, as one becomes more dependent on artificial aids to get around and about, one’s self- esteem is diminished. The severity of symptoms are correlated. In other words, physical restriction also means that other symptoms, such as incontinence, are most probably also present. The effect of such symp- toms on self-esteem hardly need belaboring. We are pleased to note, though, that physical restriction is the least powerful predictor of self-esteem in the final model. Nevertheless, those who do suffer more ex- treme symptoms need social support more than ever. Tragically, these are the people who are the most socially isolated and the people least likely to belong to a support group. Every effort should be made to increase social support among these individuals.

In summary, the results of this study rather strongly support the proposition that love is a vital element in any strategy designed to cope with debili- tating chronic disease states. People need people.

Table 4. Final regression model predicting self-esteem

Varnables b SE B I LOX 0.54 0.06 0.609 9.3 Attitude stage I.81 0.46 0.251 3.9 Years diagnosed -0.10 0.04 -0.175 -2.7

Sig.

0.0000 0.0002 0.0067

Social cl& -0.26 0.10 -0.158 -2.5 0.0124 Physical restriction -0.96 0.47 -0.129 -2.0 0.0453 Iconstant) 38.74 2.36 16.4 0.0000

Adjusted R’ = 0.513. F = 29.22, sig. = 0.0000. N = 135

798 ANTHONY WASH and PATRICIA ANN WALSH

Despite the clichkd nature of this statement it is a truism which we who are healthy cannot overlook as us

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we strive to take care of the less fortunate among

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