Living with the unexplained: coping, distress, and depression among

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Living with the unexplained: coping, distress, and depression among women with chronic fatigue syndrome and/ or fibromyalgia compared to an autoimmune disorder a

ab

Opal A. McInnis , Kimberly Matheson

& Hymie Anisman

a

a

Department of Neuroscience, Carleton University, Ottawa, ON, Canada b

Department of Psychology, Carleton University, Ottawa, ON, Canada Accepted author version posted online: 30 Jan 2014.Published online: 03 Mar 2014.

To cite this article: Opal A. McInnis, Kimberly Matheson & Hymie Anisman (2014): Living with the unexplained: coping, distress, and depression among women with chronic fatigue syndrome and/ or fibromyalgia compared to an autoimmune disorder, Anxiety, Stress, & Coping: An International Journal, DOI: 10.1080/10615806.2014.888060 To link to this article: http://dx.doi.org/10.1080/10615806.2014.888060

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Anxiety, Stress, & Coping, 2014 http://dx.doi.org/10.1080/10615806.2014.888060

Living with the unexplained: coping, distress, and depression among women with chronic fatigue syndrome and/or fibromyalgia compared to an autoimmune disorder Opal A. McInnisa*, Kimberly Mathesona,b and Hymie Anismana a

Department of Neuroscience, Carleton University, Ottawa, ON, Canada; bDepartment of Psychology, Carleton University, Ottawa, ON, Canada


(Received 7 March 2013; accepted 13 November 2013) Chronic fatigue syndrome (CFS) and fibromyalgia are disabling conditions without objective diagnostic tests, clear-cut treatments, or established etiologies. Those with the disorders are viewed suspiciously, and claims of malingering are common, thus promoting further distress. It was hypothesized in the current study that levels of unsupportive social interactions and the coping styles used among those with CFS/ fibromyalgia would be associated with perceived distress and depressive symptoms. Women with CFS/fibromyalgia (n = 39), in fact, reported higher depression scores, greater perceived distress and more frequent unsupportive relationships than healthy women (n = 55), whereas those with a chronic, but medically accepted illness comprising an autoimmune disorder (lupus erythematosus, multiple sclerosis, rheumatoid arthritis; n = 28), displayed intermediate scores. High problem-focused coping was associated with low levels of depression and perceived distress in those with an autoimmune condition. In contrast, although CFS/fibromyalgia was also accompanied by higher depression scores and higher perceived distress, this occurred irrespective of problem-focused coping. It is suggested that because the veracity of ambiguous illnesses is often questioned, this might represent a potent stressor in women with such illnesses, and even coping methods typically thought to be useful in other conditions, are not associated with diminished distress among those with CFS/fibromyalgia. Keywords: perceived stress; unsupportive social interactions; depressive symptoms; chronic illness

Coping with severe and/or chronic illnesses can be exceptionally difficult, and may have profound repercussions on mental health and quality of life (de Ridder, Geenen, Kuijer, & van Middendorp, 2008). The extent of psychological disturbances appears to be related to characteristics of the illness (e.g., treatability, pain-inducing). As well, those illnesses that have vague or uncertain features and are difficult to either diagnose or treat might create anxiety and depression (Lehman, Lehman, Hemphill, Mandel, & Cooper, 2002), depending on an individual’s ability to tolerate uncertainty. The purpose of the present investigation was to evaluate depressive symptoms among individuals with a chronic illness that is not well defined [chronic fatigue syndrome (CFS), fibromyalgia] and illnesses that are somewhat more readily diagnosed, even though a cure for these illnesses is not available [i.e., autoimmune disorders comprising lupus erythematosus, multiple *Corresponding author. Email: [email protected] © 2014 Taylor & Francis


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sclerosis (MS) and rheumatoid arthritis (RA)]. Given that CFS/fibromyalgia is often accompanied by stigma and skepticism, it was of particular interest to establish to what extent the depressive symptoms were related to unsupportive social interactions and the coping styles that individuals used. Both CFS and fibromyalgia are difficult to diagnose; objective tests have not been established, their etiologies are uncertain, and treatments have not been developed (Aaron & Buchwald, 2001). Typically, however, a diagnosis of CFS is applied when individuals report persistent (more than 6 months), relapsing fatigue associated with substantial impairments of functioning, coupled with at least four of eight additional symptoms (e.g., post-exertional malaise, joint pain without swelling, muscle pain; Fukuda et al., 1994; Reeves et al., 2003). The diagnostic criteria for CFS and fibromyalgia are somewhat different from one another, in that a diagnosis of fibromyalgia is only reached when an individual presents with widespread soft tissue pain (in at least 11 of 18-paired tender points) lasting at least three months (Wolfe et al., 1990). However, they share several features; both occur more frequently in women than in men (Steele et al., 1998) and are often characterized by fatigue, as well as memory and concentration difficulties (Wolfe et al., 1990). Moreover, because the causes of these illnesses are unknown and objective diagnostic methods are vague, they are often viewed suspiciously. Indeed, affected individuals are often thought to be malingering, which might further impair wellbeing (Åsbring & Närvänen, 2002). As such, it is likely that individuals with conditions such as CFS/fibromyalgia must contend with feelings of stigmatization. In this regard, compared to those with chronic conditions such as RA and multiple sclerosis, individuals with fibromyalgia, CFS and irritable bowel syndrome reported greater perceived stigma (Looper & Kirmayer, 2004). Given the frequent psychiatric comorbidity (Arnold et al., 2006; Katon, Buchwald, Simon, Russo, & Mease, 1991) and associations between stress, anxiety, depression, and symptom exacerbation among those with CFS/fibromyalgia (Van Houdenhove & Egle, 2004), additional distress related to the ambiguous nature of these conditions could potentiate physical–psychological disturbances. Both CFS and fibromyalgia have been associated with stress-related physiological alterations (Demitrack & Crofford, 1998), and may be manifested following a stressful period or in response to a traumatic event (Van Houdenhove & Egle, 2004). Thus, the examination of levels of perceived distress among individuals with CFS/fibromyalgia and chronic conditions, in general, is particularly relevant, given that stress can negatively influence health habits (e.g., tendency to seek medical care, attention to symptom flare ups, etc.) as well as depression or immune dysregulation (Taylor, 2003).With respect to coping with stressors,those with CFS tend to use escape-avoidance strategies, rather than problem-focused coping (Afari et al., 2000; Cope, Mann, Pelosi, & David, 1996; Nater et al., 2006). Moreover, among those with fibromyalgia, delaying coping efforts until a more convenient time was predictive of poorer physical functioning (Theadom, Cropley, & Humphrey, 2007), just as behavioral disengagement (i.e., decreasing effort to cope with the stressor) was related to poorer mental health outcomes among those with CFS (Jason, Witter, & Torres-Harding, 2003). Likewise, assessment of coping responses among those with systemic lupus erythematosus revealed prominent passive or negative coping styles (e.g., wishful thinking, avoidance, blaming) that were associated with poorer psychological outcomes. Conversely, endorsing a coping style associated with more problem solving was related to decreased risk of depression and better overall adjustment measured seven months later (McCracken, Semenchuck, & Goetsch, 1995). Similar


Anxiety, Stress, & Coping

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results have likewise been reported among those with MS (Pakenham, 1999) or RA (Brown, Nicassio, & Wallston, 1989). Perceiving social support is particularly effective in buffering against the negative effects of stressors (Lakey & Cronin, 2008), and it can serve multiple functions, such as being a source of information, guidance, instrumental help, reliable alliances, social integration, attachment, reassurance of worth, opportunity to provide nurturance, or simply a shoulder to cry on (Weiss, 1974). In contrast, experiences comprising unsupportive interactions undermine the ability of individuals to cope with stressful events (Grange, Matsuyama, Ingram, Lyckholm, & Smith, 2008). When support is reasonably expected but is not forthcoming or is viewed as being insufficient (e.g., minimizing the individual’s problems, blaming the individual, distancing, etc.), adverse mental health outcomes are favored (Ingram, Betz, Mindes, Schmitt, & Smith, 2001; Ingram, Jones, Fass, Neidig, & Song, 1999). Although the impact of unsupportive social interactions has scarcely been investigated among those with CFS and fibromyalgia, in women with fibromyalgia greater interpersonal stress was related to elevated pain, whereas this was not apparent in other chronic pain conditions, such as osteoarthritis (Zautra, Hamilton, & Burke, 1999). Furthermore, women with fibromyalgia reported more frequent negative social interactions than did those with other chronic pain conditions (e.g., osteoarthritis). They may thus be at particular risk for poor outcomes (Davis, Zautra, & Reich, 2001). It would seem that the coping methods used by individuals with CFS and fibromyalgia involve avoidance-focused methods at the expense of problem-focused coping. However, in most studies the coping methods of CFS/fibromyalgia patients considered the pain and/or fatigue associated with the illness, and they were often compared to individuals who were not ill. Thus, it is uncertain whether the altered coping was unique to those with CFS/fibromyalgia or would be evident in other conditions that involved a chronic component. Furthermore, the available data do not speak to whether CFS/fibromyalgia was accompanied by excessive use of particular emotion-focused coping methods. For example, rumination that commonly is associated with depression (Nolen-Hoeksema, 2000) might be expected in those with high depression scores, regardless of their medical condition. It might likewise be expected that women with CFS/fibromyalgia and other chronic conditions might engage in particular coping methods (e.g., wishful thinking); however, coping strategies that comprise blaming others and emotional expression might be particularly marked in CFS/fibromyalgia given that they often encounter unsupportive relations. In the present investigation we hypothesized that those with CFS/fibromyalgia would favor emotion/avoidant coping relative to that evident among those with less ambiguous, but chronic conditions (i.e., autoimmune disorders). It was similarly hypothesized that in light of the frequent stigmatization of those with CFS and fibromyalgia, depressive symptoms and perceived stress would be more pronounced than among individuals with chronic, substantiated illnesses. It was also of interest to examine the relation between coping styles and outcomes such as depressive symptoms and perceived stress. It was hypothesized that the nature of the illness (e.g., is it treatable, stigmatizing, etc.) would impact the effectiveness or ineffectiveness of certain coping methods (e.g., problem-focused coping or emotionfocused coping). Finally, the current study addressed a gap in the literature regarding experiences of unsupportive social interactions in relation to distress and depressive

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symptoms among those with CFS/fibromyalgia in comparison to healthy individuals and those with other chronic conditions.


Methods Participants A sample of Canadian women (N = 122) over the age of 30, living in Canada participated in this study. Of these women, 45.08% (n = 55) were categorized as “healthy” as they reported no current medical or psychiatric diagnoses. Once participants in the CFS/ fibromyalgia and autoimmune conditions were recruited, their medical histories were reviewed by the first author and only those who corroborated their diagnosis in the medical history portion of the questionnaire were included. Thus, simply indicating their diagnoses from a provided list of conditions at the beginning of the survey was not sufficient to be categorized in either illness category. In order to be included in one of the two health condition groups, participants must have indicated that their diagnosis was made by a certified physician as well as any treatments and medications they were currently receiving for their chronic condition. Those participants who did not explicitly indicate the details regarding their illness were not included in the study. Thus, of the initial 89 participants recruited who indicated that they had received a diagnosis of either CFS/fibromyalgia or an autoimmune condition from a physician, only the data of 67 were deemed reliable based on the judgments of the first author; these comprised 28 and 39 participants in the autoimmune and CFS/fibromyalgia conditions, respectively. The autoimmune group primarily comprised individuals who reported a diagnosis of RA (n = 17, 60.71%), whereas the remainder reported having either lupus erythematosus (n = 7, 25.00%) or MS (n = 4, 14.29%). The CFS/fibromyalgia group comprised individuals who reported being diagnosed with fibromyalgia (n = 22, 56.41%) or a diagnosis of CFS (n = 11, 28.21%), with the remainder reporting concurrent diagnoses of the two conditions (n = 6, 15.38%).

Procedure Women were recruited to participate in an online study conducted over a five-month period. The study was approved by the Carleton University Psychology Research Ethics Committee, and all participants provided informed consent. Women living with chronic conditions were recruited from support centers and online support forums across Canada in collaboration with forum administrators and support group facilitators. Only those support centers and online forums specific to the target populations (e.g., those for individuals with CFS and fibromyalgia, and the autoimmune conditions of interest) were contacted. Upon entering the study, participants were asked to indicate from a list of 15 medical and psychiatric conditions (including CFS/fibromyalgia, and the autoimmune conditions) if they had received a diagnosis by a certified medical physician. Thereafter, only those who corroborated their diagnosis in the medical history portion of the survey were included in the data-set. Recruitment of healthy women was achieved through notices posted on public online classifieds. Upon completion of the online questionnaires, all women were debriefed and provided with contact information and those who indicated having a chronic condition were given additional contacts for support services. All responses were verified for


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validity by (one) ensuring that the Internet Protocol address was not duplicated in study submissions, (two) excluding data if the participant completed the questionnaires in less time than deemed feasible, and (three) verifying that answers to pre-identified items were not random and displayed a consistent pattern. Once their scores were verified, all participants (in all three groups) were given a five-dollar gift card for their participation.

Statistics The statistical analyses were performed using SPSS for Windows 18.0 (SPSS Science, Chicago, IL, USA). Statistical significance was determined at p < .05 (two-tailed). Analyses assessing differences on depression scores, perceived stress and unsupportive social interactions were assessed using univariate ANOVAs with Tukey’s post-hoc follow-up, a single-step multiple comparison procedure that maintains the α at .05. Mean differences among coping dimensions as well as unsupportive social interactions subscales were tested using multivariate analyses of variance (MANOVA) with Tukey’s post-hoc follow-up. Moderations were analyzed using hierarchical regression analysis. Significant moderations were followed up by using a web utility for simple slopes (an online calculator that determines if slopes significantly differ from zero; Preacher, Curran, & Bauer, 2006). In all regression analyses standardized scores were used. Correlational analysis was performed using Pearson’s product moment correlations.

Instruments Demographics and medical history Demographic information included employment status, education, marital status, employment, and living arrangements. The medical history included details concerning women’s current and previous medical and psychiatric diagnoses as well as current medications.

Coping styles The Survey of Coping Profile Endorsement (Matheson & Anisman, 2003) is a 50-item scale that assesses the means individuals use to cope. On a scale of one “never” to five “almost always,” participants indicated the extent to which they would use this as a way of dealing with problems or stressors in recent weeks. A principal component analysis with a varimax rotation was performed to determine the factors this scale was comprised of. Items were included on a factor when loadings were greater than .40. Emotionfocused coping comprised ruminations, emotional expression, blaming others and wishful thinking (Cronbach’s α = .91). Specifically, some of the items included as emotionfocused coping were: “gone over your problems in your mind over and over again?,” “found yourself crying more than usual?.” Avoidant coping comprised cognitive distraction, passive resignation, emotional containment and self-blame (Cronbach’s α = .84). The avoidant factor included items such as “resigned yourself to your problems?,” “kept your feelings bottled up inside?.” Problem-focused coping comprised problem solving, cognitive restructuring, active distraction, and social support (Cronbach’s α = .89). Example items that comprised problem-focused coping included

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“sought out information that would help you solve your problems?”, “made plans to overcome your problems?.” Unsupportive social interactions The Unsupportive Social Interactions Inventory (Ingram et al., 2001) is a 24-item inventory that assessed how often [from “none” (zero) to “a lot” (four)] during the last month the participants experienced unsupportive responses when they talked with others about events in their life. The scale contains four underlying dimensions measuring unsupportive or upsetting responses they may have received: distancing (behavioral or emotional disengagement, e.g., “would not seem to want to hear about it.”; Cronbach’s α = .91), bumbling (behaviors that are awkward, uncomfortable or intrusive, e.g., “would not seem to know what to say, or would seem afraid of saying or doing the ‘wrong’ thing.”; Cronbach’s α = .82), minimizing (attempts to force optimism, or to minimize the individual’s concerns, e.g., “would feel that I was overreacting.”; Cronbach’s α = .90), and blaming (criticism or finding fault, e.g., “would make ‘I told you so’ or similar comments.”; Cronbach’s α = .88). Perceived stress The 14-item Perceived Stress Scale (Cohen, Kamarck, & Mermelstein, 1983) was used to assess the degree to which the participants’ life was appraised as stressful. Participants were asked about their feelings and thoughts during the last month and asked to indicate how often they felt or thought a certain way, ranging from zero “never” to four “very often.” Examples of items included in this scale are: “how often have you felt that you were unable to control the important things in your life?” or “how often have you felt nervous and ‘stressed’?.” The total scores were calculated by taking the mean across all items (Cronbach’s α = .88). Depressive symptoms The 21-item Beck Depression Inventory was used to evaluate depressive symptoms (Beck, Ward, Mendelson, Mock, & Erbaugh, 1961). As the disorders assessed might include symptoms of atypical depression (increased sleep, elevated fatigue), seven additional items were included that assessed atypical depressive symptoms (e.g., I have had at least three-hour increase in sleep length, I have gained more than ten pounds, I am eating a lot more than usual). The responses ranged from zero (not severe) to three (severe). The total score for typical depressive symptoms was calculated by summing across all 21 items (Cronbach’s α = .92), and atypical symptoms by summing across the seven items (Cronbach’s α = .79).

Results Demographics Women in the healthy group ranged in age from 30 to 65 years of age (M = 40.40, SD = 9.51). Women with autoimmune disorders were 30–58 years of age (M = 43.57, SD = 8.93), whereas the CFS and/or fibromyalgia group were 30–71 years of age


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Table 1. Demographic characteristics within each health group.

Age Illness duration (years) Employment status Employed Unemployed Disability Retired Other Education level No high school diploma High school or some university University degree or higher Relationship status Married Single In a relationship Widowed/divorced/ separated

Healthy

Other autoimmune disorders

CFS/fibromyalgia

M = 40.4, SD = 9.51 N/A

M = 43.6, SD = 8.93 M = 6.8, SD = 10.21

M = 43.2, SD = 10.47 M = 8.7, SD = 8.84

76.4% 14.5% 0.0% 1.8% 7.3%

46.5% 25.0% 21.4% 7.1% 0.0%

46.2% 20.5% 28.2% 5.1% 0.0%

1.8%

3.6%

2.6%

56.4%

67.8%

48.7%

41.8%

28.6%

48.7%

47.4% 20.0% 29.0% 3.6%

67.8% 10.7% 17.9% 3.6%

38.5% 36.0% 12.8% 12.7%

(M = 43.23, SD = 10.47). The three groups (CFS/fibromyalgia, autoimmune conditions and healthy group) did not differ on age, F(2, 119), 1.43, ns, ethnicity, χ2(1) = 9.02, ns, relationship status, χ2(1) = 22.14, ns, or education level, χ2(1) = 4.59, ns (see Table 1 for demographic information). As shown in Table 1, employment status did differ between healthy women and those in the chronic condition groups, in that fewer women in these groups were employed full time χ2(1) = 18.28, p < .001; this was expected in light of the fact that having an autoimmune condition or CFS/fibromyalgia may impede one’s ability to work, as was the case in the current sample.

Depressive symptoms and perceived stress A one-way analysis of variance (ANOVA) revealed that depression scores and perceived stress varied as a function of health status, F(2, 119) = 13.62 and 6.00, p < .01, η2 = .186 and .092. Tukey’s follow-up comparisons revealed that depression and perceived stress scores among women with CFS/fibromyalgia were higher than those of healthy women, but did not differ from those of women in the autoimmune group (Figure 1A and C). Atypical depression scores also varied as a function of health status F(2, 119) = 19.79, p < .0001, η2 = .250, and the follow-up comparisons revealed that women in the CFS/ fibromyalgia group had significantly higher atypical depression scores than women in either the healthy or autoimmune groups, and women with autoimmune disorders had higher scores than did healthy women (Figure 1B).

O.A. McInnis et al.


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Figure 1. Mean (±SE) overall depression scores (Panel A), atypical depression scores (Panel B) and perceived stress scores (Panel C) among individuals with CFS/fibromyalgia, other autoimmune disorders, and in healthy controls. Note: *p < .05, **p < .01, ***p < .001.

Coping When dealing with a medical condition, particularly one of a chronic nature, the coping styles individuals use may be an important predictor of psychological well-being. It was



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Figure 2. Mean (±SE) emotional expression coping scores among women with CFS/fibromyalgia, other autoimmune disorders, and in healthy controls. Note: *p < .05.

considered that although coping styles ought to be fairly fixed (unlike coping strategies that might vary across situations), chronic illness such as autoimmune disorders or CFS/ fibromyalgia might be associated with coping styles that could be distinguished from those of controls. Although a MANOVA revealed no significant differences between groups with respect to the coping styles used, Pillai’s Trace F(6, 236) = 1.10, ns, η2 = .03, a priori hypotheses (as described earlier) had been made concerning the relationship between aspects of emotion-focused coping (i.e., emotional expression, rumination, wishful thinking, other blame) and illness. Further analyses were undertaken to determine whether the three health conditions differed across these specific emotion-focused coping dimensions. A MANOVA revealed a significant difference in the emotion-focused coping dimensions as a function of group, Pillai’s Trace F(8, 234) = 2.47, p < .05, η2 = .078, and the subsequent individual univariate ANOVAs indicated that the emotional expression dimension varied across the three conditions, F(2, 119) = 3.87, p < .05, η2 = .061. Tukey’s follow-up comparisons indicated higher reports of emotional expression among those with CFS/fibromyalgia than healthy women, although no differences were found among those with an autoimmune condition relative to women with either CFS/ fibromyalgia or healthy women (Figure 2).

Moderating role of health status It was hypothesized that health status would moderate the relationships between both coping and perceived stress as well as coping and depression scores. To assess this, two contrasts among groups were conducted; one comparing those who were healthy

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Table 2. Hierarchical regression analyses of associations with depressive symptoms and perceived stress. Perceived stress


b Step 1 Chronic conditions vs. healthy CFS/fibromyalgia vs. autoimmune conditions Step 2 Problem-focused coping Emotion-focused coping Avoidance-focused coping Step 3 Chronic conditions vs. healthy × problem-focused coping Chronic conditions vs. healthy × emotion-focused coping Chronic conditions vs. healthy × avoidance-focused coping CFS/fibromyalgia vs. autoimmune conditions × problem-focused coping CFS/fibromyalgia vs. autoimmune conditions × emotion-focused coping CFS/fibromyalgia vs. autoimmune conditions × avoidance-focused coping

ΔR2

Depressive symptoms b

.09** 0.10** 0.11

ΔR2 .19***

2.54*** 2.14 .49***

−0.19*** 0.32*** 0.00

.30*** −2.45** 3.32*** 1.23

.06**

.06*

0.01

0.23

0.03

0.93

−0.02

−0.83

0.23***

3.52**

0.06

1.03

−0.01

0.21

Note: *p < .05, **p < .01, ***p < .001.

(coded −2) to those with a chronic condition (coded 1; combining CFS/fibromyalgia and autoimmune disorders) and the other comparing those with CFS/fibromyalgia (coded 1) to those with an autoimmune condition (coded −1). A hierarchical regression analysis was performed with the groups entered on the first step, the three standardized coping dimensions entered on the second step, and the interactions between coping dimensions and groups entered on the third step. As expected, coping was associated with stress perception over and above the contribution of health status, ΔR2 = .49, ΔF(3, 116) = 45.47, p < .001. In this regard, the regression analysis revealed that problem-focused coping was related to lower perceived stress, b = −0.19, t = −5.07, p < .001, emotionfocused coping was associated with greater perceived stress, b = 0.32, t = 6.52, p < .001, whereas avoidance-focused coping did not relate to perceived stress, b = 0.00, t = 0.06, ns. The moderating role of health status explained a significant proportion of variance of perceived stress, ΔR2 = .06, ΔF(6, 110) = 3.09, p < .01. A significant interaction was observed between the CFS/fibromyalgia group and the autoimmune disorders group with respect to problem-focused coping, b = 0.23, t = 3.88, p < .001 (Table 2). The same analyses were then performed to assess depression scores as the outcome. Once again, coping was associated with depressive symptoms, ΔR2 = .29, ΔF(3, 116) = 21.17,



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p < .001; problem-focused coping was related to lower depression scores, b = −2.24, t = −2.83, p < .001, emotion-focused coping was related to greater depression scores, b = 4.30, t = 4.30, p < .01, and avoidance-focused coping did not relate to depressive symptoms, b = 0.79, t = 0.77, ns. Similarly, health status moderated this relationship, explaining a significant proportion of variance of depressive symptoms, ΔR2 = .06, ΔF(6, 110) = 2.38, p < .05. Again, the moderating effects of health status were found to be between the CFS/fibromyalgia group and the autoimmune disorders group with respect to problem-focused coping, b = 3.65, t = 3.32, p < .01 (Table 2). To further examine the moderating role of health status on the relationships between problem-focused coping and perceived stress as well as depressive symptoms, simple slopes analyses were performed using Preacher et al.’s (2006) web utility for probing multiple linear regression two-way interactions. This revealed that women with an autoimmune disorder with high levels of problem-focused coping reported lower levels of perceived stress and lower levels of depressive symptoms than those who engaged in low levels of problem-focused coping; however, among those women in the CFS/fibromyalgia group these relationships were not observed (Figure 3A and B). Indeed, among these women, depression scores and levels of distress were high irrespective of their tendency toward using a problem-focused coping method. Interestingly, the moderating effects of health status seemed to play a specific role in the relationships involving problem-focused coping, as health group had no significant moderating role on relationships among emotion-focused coping and these outcomes. In fact, it appears that regardless of health status greater levels of emotion-focused coping

Figure 3. The endorsement of problem-focused coping as moderated by health status in relation to perceived stress (Panel A) and depression scores (Panel B). The endorsement of emotion-focused coping was not moderated by health status in relation to perceived stress (Panel C) and depression scores (Panel D). Note: ***p < .001.

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are associated with greater levels of perceived stress (Figure 3C) and depression scores (Figure 3D).


Unsupportive social interactions Total unsupportive social interactions varied as a function of health status, F(2, 119) = 7.37, p < .01, η2 = .110. Specifically, follow-up analysis revealed that the level of perceived unsupportive social interactions were higher among women with CFS/ fibromyalgia relative to that of healthy women, whereas levels of unsupportive social interactions among women with autoimmune disorders did not significantly differ from healthy women or those women with CFS/fibromyalgia (Figure 4). It was of interest to examine the subscales of unsupportive social interactions as it was thought that the groups might differ depending on the type of unsupportive social interactions experienced. A MANOVA performed with the four unsupportive social interaction dimensions revealed that levels of the unsupportive social interaction subscales varied as a function of health status Pillai’s Trace F(8, 234) = 3.67, p < .001, η2 = .110. These differences were examined in univariate ANOVA’s for each type of unsupportive social interaction. Bumbling and blaming varied across groups, Fs (2, 119) = 4.22 and 4.17, p < .05, η2 = .066 and η2 = .06, respectively. Similarly, the minimizing and distancing dimensions also varied across groups, Fs (2, 119) = 3.90 and 11.71, p < .05 and .001, η2 = .06 and η2 = .16, respectively. Tukey’s follow-up comparisons revealed that like total unsupportive social interactions, the blame and bumbling dimensions were significantly higher among women in the CFS/fibromyalgia compared to healthy women, but no significant differences were revealed between CFS/

Figure 4. Mean (±SE) total unsupportive social interactions and subtypes (bumbling, blaming, distancing and minimizing) among women with CFS/fibromyalgia, CFS/fibromyalgia, other autoimmune disorders, and in healthy controls. Note: *p < .05, ***p < .001.


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Table 3. Pearson correlations among depression scores and coping styles and unsupportive social interactions.

Coping styles Emotion-focused Avoidance-focused Problem-focused Perceived stress Unsupportive social interactions

Healthy

Other autoimmune disorders

CFS/fibromyalgia

.55** .51** −.49** .62*** .44**

.45* .45* −.59** .73*** .62**

.60** .37* −.21 .74*** .39*


Note: ***p < .001, **p < .01, *p < .05.

fibromyalgia and healthy groups compared to the autoimmune disorders group (Figure 4). Furthermore, women in the CFS/fibromyalgia groups reported significantly higher minimizing and distancing than both the healthy and autoimmune disorders group, while no differences on these dimensions were revealed comparing healthy women to women with an autoimmune disorder (Figure 4).

Correlational analyses Pearson product moment correlations were conducted to determine the degree to which the depressive symptoms were related to the measures within each of the three groups (Table 3). Relationships between unsupportive social interactions and depressive symptoms as well as those between perceived stress and depressive symptoms were relatively similar between the three groups. Essentially, in each of the three groups unsupportive social interactions and perceived stress were positively correlated with depressive symptoms. The autoimmune and healthy groups were similar in their relationships with respect to associations involving coping and depression. Specifically, problem-focused coping was negatively related to depression scores, but this relationship was not evident among women with CFS/fibromyalgia. Each of the groups had similar relationships with respect to emotion-focused coping and avoidance coping, in that these dimensions were positively related to depression scores.

Discussion In the current study, women living with CFS/fibromyalgia or a chronic autoimmune disorder expressed higher depression scores than did healthy women. Moreover, women in the CFS/fibromyalgia condition exhibited higher levels of atypical depression (which largely comprises reverse neurovegetative symptoms, such as increased sleep, fatigue and eating) relative to those in the autoimmune conditions, who displayed higher levels of these symptoms than did healthy women. This is consistent with previous reports regarding CFS and fibromyalgia (Henningsen, Zimmermann, & Sattel, 2003; Tander et al., 2008) and is not surprising given that depression is common among individuals living with chronic medical conditions (de Ridder et al., 2008). Of course, there is considerable overlap between depressive symptoms and fatigue (Leone, 2010), making it difficult to disentangle whether elevated depression scores among those with CFS/ fibromyalgia reflect underlying somatic symptoms or features of depression. The


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processes responsible for these differences in depression scores remain unknown and it is uncertain whether depression is a cause or result of CFS (Afari & Buchwald, 2003) or fibromyalgia (Krsnich-Shriwise, 1997). In as much as treatment strategies for typical and atypical depression are not identical (Davidson & Thase, 2007), the possibility might be considered that treatment of comorbid depression in these conditions might also call for different treatment strategies. As expected, aspects of unsupportive social interactions, notably distancing and minimizing, were higher among women with CFS/fibromyalgia relative to both healthy women and those with autoimmune disorders. CFS and fibromyalgia are both legitimate disabling conditions that likely have a biological basis (Parker, Wessely, & Cleare, 2001), possibly being subserved by immunological and cytokine disturbances (Bansal, Bradley, Bishop, Kiani-Alikhan, & Ford, 2012; Di Franco, Iannuccelli, & Valesini, 2010). However, these conditions have a history of being questioned and often those with the illness are viewed as being malingerers (Åsbring & Närvänen, 2002). As unsupportive social interactions in the current study were not specifically focused on negative responses received because of one’s health condition, it remains to be determined whether the higher reports of minimization and distancing among women with CFS/ fibromyalgia compared to those with a chronic autoimmune condition reflects the unique challenges faced by women with these conditions. Depression has been associated with higher emotion-focused coping and, to a lesser extent, lower problem-focused coping (Matheson & Anisman, 2003). Given the unique circumstances of women with CFS/fibromyalgia, it had been expected that these women would report still greater emotion-focused coping relative to the other two groups of women, and that the relationship between emotion-focused coping and depression would be stronger than in healthy women or those with an autoimmune condition. Overall, coping styles did not differ across the groups; however, the women in the CFS/ fibromyalgia condition reported greater emotional expression than did women who were healthy. In effect, although emotion-focused coping comprises multiple characteristics (e.g., blame, rumination, and wishful thinking), emotional expression was uniquely elevated in the CFS/fibromyalgia condition relative to healthy women. Furthermore, it appeared that depression and perceived stress were related to increased use of emotionfocused coping, but this was the case irrespective of individuals’ medical condition. Among healthy women and in those with an autoimmune disorder, a strong negative relationship existed with respect to problem-focused coping and both perceived stress and depression scores. In contrast, this relationship was not evident among women with CFS/ fibromyalgia. Although no differences in coping styles have been reported when comparing individuals with CFS to individuals with medically explained fatigue and those with idiopathic fatigue (Jason et al., 2003), others have reported greater endorsement of escape-avoidance strategies and lower use of problem-focused coping among individuals with CFS (Afari et al., 2000). It will be recalled that coping is not inherently adaptive or maladaptive and although coping styles are relatively fixed, it remains possible that they may change over time and across situations. Ordinarily, it might be expected that a problem-focused coping style would have beneficial effects among those suffering from a chronic condition, and this relationship was in fact observed among women with an autoimmune disorder. In contrast, the relationship between problem-focused coping and both perceived stress and depression was not apparent among women with CFS/fibromyalgia. It is possible that the challenges these



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women face (e.g., seeking out information when information is limited, seeking social support but being met with unsupportive responses) might have been responsible for the absence of an association between this form of coping and levels of perceived stress and depressive symptoms. As the current study measured coping styles, an important extension of these findings would be to determine coping strategies among those living with these conditions in the context of different stressors, including those that were illness-related or unrelated. Although the present data suggest a role for psychosocial factors in relation to depression associated with illness, one of the limitations of the current study is that it relied on self-reports of illness diagnoses. Ideally, confirmation through medical records or clinical assessment would have been preferable. This is particularly problematic among those with CFS and fibromyalgia, as these diagnoses are not easily reached in the absence of reliable diagnostic tests and are, in fact, attained by means of excluding other medical conditions (Aaron & Buchwald, 2001). Another potential limitation of the current study concerns the generalizability of the current sample. Women with chronic conditions were largely recruited from support centers, and thus this may represent a biased sample, as these are individuals who have actually sought social support, as opposed to the potentially great number who chose not to seek such help, possibly owing to the stigma associated with the illness. For instance, it was reported that consuming instrumental support (e.g., information or advice seeking, membership in support groups) predicted poorer health outcomes among individuals with CFS (Johnson, Gil-Rivas, & Schmaling, 2008). In effect, it was suggested that those who sought help were either most affected or those who had the greatest illness conviction. The present study, in contrast, was community-based and might not have included individuals with the highest illness severity. In fact, those with CFS, fibromyalgia and other unexplained conditions recruited from medical clinics have been shown to have greater impairments and more concurrent psychiatric diagnoses than those recruited from other sources (Aaron et al., 1996). In this regard, as a group, those with CFS and fibromyalgia expressed considerable skepticism and suspicion about participating in experimental studies and organizers feared that published papers would indicate that the illness was not a legitimate one. This not only limited the recruitment of participants, but raised the question as to whether those that participated were representative of the sample as a whole. The sample size was also modest, especially in the autoimmune disorders group. Given the number of variables examined it is possible that the lack of power precluded some between-group differences from being detected. As well, owing to the limited sample size, other important variables (e.g., illness duration; history of diagnoses received) could not be assessed, even though these factors could have had a marked impact on coping, unsupportive social interactions, and depression. Furthermore, due to the closed-ended design of the study, responses were relatively restricted, limiting the potential depth of interpretation. For instance, the source of unsupportive responses was uncertain among these women, which in itself could be an important issue given that support resources could have influenced psychological state. It is difficult to ascertain which member(s) of the women’s support network reflected these responses (e.g., family, friends, coworkers, or a combination) and similarly, unsupportive responses might not have been equivalent for each of these sources.

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Conclusion Women living with CFS and fibromyalgia endure unique challenges, such as unsupportive social interactions, which impact their well-being. Thus, although problem-focused coping was accompanied by low levels of depression among women with an autoimmune disturbance, this relation was not evident among those with CFS/ fibromyalgia. It seems that endorsing a coping style that is usually viewed as being highly adaptive may not appear so among individuals dealing with an illness that is not well understood and has not received widespread acceptance and, indeed, is often accompanied by stigma. Thus, for these women alternative interventions aimed at attenuating feelings of distress and depressive symptoms might be more effective, including interventions that focus on altering appraisals of events. As well, the present findings reinforce the importance of addressing the psychosocial correlates of CFS/fibromyalgia, possibly through proper education of the public and health-care providers regarding such “unexplained” conditions. To do so, it might be necessary to document the existence of consistent biological substrates underlying these illnesses before they are accepted as being valid syndromes.

Funding This research was funded by the Canadian Institutes of Health Research [MOP 81118]. HA is a Canada Research Chair in Neuroscience.

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