Finding benefit in stressful uncertain circumstances: relations to social support and stigma among women with unexplained illnesses.

http://informahealthcare.com/sts ISSN: 1025-3890 (print), 1607-8888 (electronic) Stress, Early Online: 1–9 ! 2015 Informa UK Ltd. DOI: 10.3109/10253890.2014.1001975

ORIGINAL RESEARCH REPORT

Finding benefit in stressful uncertain circumstances: relations to social support and stigma among women with unexplained illnesses Opal A. McInnis1, Robyn J. McQuaid1, Amy Bombay2, Kimberly Matheson3, and Hymie Anisman1 1

Department of Neuroscience, Carleton University, Ottawa, ON, Canada, 2Department of Psychiatry, Dalhousie University, Halifax, NS, Canada, and Department of Health Sciences, Carleton University, Ottawa, ON, Canada

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Abstract

Keywords

Living with a chronic illness can be challenging, but the ability to derive benefits and grow from this experience may enhance well-being. However, the possibility of obtaining such benefits may be dependent on the levels of stigmatization and lack of social support experienced by an individual as a result of the illness. Chronic fatigue syndrome (CFS) and fibromyalgia are chronic conditions that remain largely unexplained and those with these conditions must often contend with stigma and skepticism from others. Individuals with CFS/fibromyalgia often display stress-related biological alterations and the experience of stressful life events has been associated with illness development. The present study demonstrated that women with CFS/ fibromyalgia (n ¼ 40) as well as community participants who were depressed/anxious (n ¼ 37), reported higher stigma levels than healthy women (n ¼ 33). Moreover, women with CFS/ fibromyalgia and those with depression/anxiety also reported greater levels of stigma than women with a chronic yet more widely accepted condition (n ¼ 35; rheumatoid arthritis, osteoarthritis and multiple sclerosis). Secrecy related to stigma among those with CFS/ fibromyalgia declined with increased social support, but this was not apparent among those with other chronic conditions. In addition, posttraumatic growth was lower among women with CFS/fibromyalgia compared to those with other chronic conditions. Qualitative analysis examining both negative impacts and positive changes stemming from illness experience revealed many similarities between women with CFS/fibromyalgia and those with other chronic conditions, including elevated appreciation for life, personal growth and compassion for others. However, women with CFS/fibromyalgia tended to report less positive change regarding interpersonal relationships compared to women with other chronic conditions. In general, unexplained illnesses were also accompanied by stigmatization which might ultimately contribute to women’s lower ability to derive positive growth from their illness experience.

Chronic illness, chronic fatigue syndrome, fibromyalgia, posttraumatic growth, social connections, negative social interactions

Introduction Although chronic illnesses are accompanied by many challenges, the ability to derive meaning and to grow from this experience may enhance well-being (Barskova & Oesterreich, 2009). Positive outcomes associated with personal growth have been reported among individuals living with various health conditions (Tedeschi & Calhoun, 2004), including heart disease (Sheikh, 2004), cancer (Cordova et al., 2001), HIV/ AIDS (Milam, 2006) and other chronic illnesses (Danoff-Burg & Revenson, 2005; Pakenham, 2005). However, being able to find benefit may be contingent on characteristics of the illness (e.g. is it explainable, stigmatizing). Chronic fatigue syndrome (CFS) and fibromyalgia are disabling, unexplained medical conditions with a diverse set of features (e.g. fatigue, widespread pain, among others), but they remain difficult to Correspondence: Opal A. McInnis, Department of Neuroscience, Carleton University, 1125 Colonel By Drive, Ottawa, Ontario K1S 5B6, Canada. Tel: +1 613 520 2692. Fax: +1 613 520 4052. E-mail: [email protected]

History Received 25 August 2014 Revised 18 December 2014 Accepted 20 December 2014 Published online 23 January 2015

diagnose, owing to the lack of objective diagnostic tests, established etiologies or clear-cut treatments (Afari & Buchwald, 2003). Given their uncertain nature, coupled with ˚ sbring & Na¨rva¨nen, experiences of stigma and skepticism (A 2002; Dickson et al., 2007; Looper & Kirmayer, 2004; Ware, 1992), positive growth and meaning-making may be difficult to achieve among individuals with CFS/fibromyalgia. This said, it was reported that women with fibromyalgia, who employed more daily reminders of illness-related benefits, were more likely to report greater positive affect (Tennen & Affleck, 1999). Moreover, a qualitative analysis revealed personal growth in a small subset of women with CFS (Arroll & Howard, 2013), and women frequently reported illness gains ˚ sbring, 2001). in relation to CFS and fibromyalgia (A Both CFS and fibromyalgia have been linked to stressful experiences. In this regard, several studies have identified traumatic life events as risk factors in the development of CFS and fibromyalgia (Borsini et al., 2014), and both illnesses have been characterized by alterations in hypothalamic– pituitary–adrenal (HPA) axis functioning (Geiss et al., 2012;


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O. A. McInnis et al.

Powell et al., 2013). Further, stressors that affect neuroendocrine and cytokine responses associated with CFS and fibromyalgia (Maes et al., 2012; Rodriguez-Pinto´ et al., 2014) could thereby influence the severity of CFS and fibromyalgia symptoms (Demitrack & Crofford, 1998; Hall et al., 2014). Thus, understanding the factors that might serve to buffer (e.g. social support and posttraumatic growth) or exacerbate stress (e.g. stigma) among individuals with such conditions may play an integral role in promoting their wellbeing. Individuals with CFS and fibromyalgia perceive low levels of social support (Anderson & Ferrans, 1997; Lewis et al., 1994; Schoofs et al., 2004) and the limited social networks of these individuals are associated with greater illness symptoms and diminished quality of life (Prins et al., 2004; Schoofs et al., 2004; van der Werf et al., 2002). However, posttraumatic growth may nevertheless be facilitated by social support, as it may provide a vehicle through which narratives about changes can be developed and incorporated into new perspectives (Tedeschi & Calhoun, 1996), while concurrently serving as a buffer against the negative impact of stressors (Cohen & Wills, 1985; Thoits, 2011). There is a well-established negative association between stigma and well-being, which has been observed across various stigmatized groups (Fife & Wright, 2000; Schmitt et al., 2014). Thus, one aim of the current study was to examine stigma among those with CFS/fibromyalgia compared to other highly stigmatized groups (e.g. mental health conditions comprising depression and anxiety disorders) as well as chronic medical conditions, including multiple sclerosis, rheumatoid arthritis and osteoarthritis. It was hypothesized that individuals with CFS/fibromyalgia would report greater perceived stigmatization as well as lower levels of social support relative to those with other chronic illnesses. However, it was expected that social support would be associated with lower levels of perceived stigma among individuals with these illnesses. Finally, although coping and resilience in the face of illness has frequently been assessed, little is known about how those with CFS and fibromyalgia cope with stressful events, including their use of benefit finding. Thus, using both qualitative and quantitative methods we explored whether women with CFS/fibromyalgia were able to derive positive growth from living with an ambiguous illness.

Methods Participants Participants were Canadian women over the age of 30 (N ¼ 145). The sample comprised four groups who either reported no current medical or psychiatric diagnoses (n ¼ 33) (Mage ¼ 41.52, SD ¼ 9.74), or were affected by one of several illnesses. One of these illness groups consisted of women diagnosed with CFS/fibromyalgia by a certified medical doctor (n ¼ 40) (Mage ¼ 48.37, SD ¼ 9.69). Of these women, some displayed fibromyalgia (n ¼ 28), CFS (n ¼ 5) or both (n ¼ 7). A second medical condition comprised women who had been diagnosed with other chronic pain conditions (n ¼ 35) (Mage ¼ 50.32, SD ¼ 11.64), including multiple sclerosis (n ¼ 27), rheumatoid arthritis (n ¼ 4) or osteoarthritis (n ¼ 4).

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Finally, women who indicated having a mental health condition were assessed (n ¼ 37; Mage ¼ 39.11, SD ¼ 9.04), including those with depression (n ¼ 21), anxiety (n ¼ 8) or both (n ¼ 8). Women in the CFS/fibromyalgia and the other chronic illness groups, not unexpectedly, also reported concurrent diagnoses of mental health conditions. In particular, 32 of 40 women in the CFS/fibromyalgia group reported having a depressive disorder (n ¼ 18), anxiety disorder (n ¼ 3), anxiety and depressive disorder (n ¼ 8) or other mental health disorders (n ¼ 3). Likewise, 19 of 35 women in the other chronic illness group reported co-morbid mental health illnesses that comprised depressive disorders (n ¼ 9), anxiety disorders (n ¼ 3), both anxiety and depressive disorders (n ¼ 5) or other mental health disorders (n ¼ 1).There were no significant differences in duration of illness among the women across conditions, F(2, 98) ¼ 0.30, ns. There were also no significant differences across the groups in relationship status 2(24) ¼ 27.24, ns, education level, 2(18) ¼ 17.73, ns or income level, 2(21) ¼ 17.02, ns. However, there was a significant difference in age, F(3, 145) ¼ 10.27, p50.001, 2 ¼ 0.18, such that women who were part of the healthy group were significantly younger than those in the CFS/fibromyalgia group (p50.05) as well as the other chronic conditions group (p50.01). Similarly, women in the mental illness group were younger than those in the CFS/fibromyalgia group (p50.001) as well as the other chronic conditions group (p50.001). However, women in the CFS/fibromyalgia did not differ in age from those in the other chronic conditions group. As such, for any analyses that included participants in the mental illness or healthy group, age was included as a covariate. Demographic factors for these groups are provided in Table 1. Procedure The study, which was conducted online over a six-month period, was approved by the Carleton University Ethics Committee for Psychological Research, and all participants provided informed consent. Women in the various health groups (CFS/fibromyalgia, other chronic illnesses and mental health conditions) were recruited from support centers and online support forums across Canada in cooperation with support group facilitators and forum administrators. Recruitment postings were limited to support centers and online forums specific to the various health conditions (e.g. those for individuals with CFS and fibromyalgia, arthritis, depression, etc.). Participants were provided with a list of 15 different illnesses and asked to indicate for which illness they had received a diagnosis by a certified medical physician (including CFS/fibromyalgia, chronic conditions, mental health conditions, etc.). They were also asked to indicate whether they had been diagnosed with more than one of these conditions and, if so, to select the condition that caused them the greatest distress. This question was included to allow for the illness specific measures that were used throughout the study to be tailored to their respective illnesses. Importantly, medical diagnoses were not verified by the participants’ physicians and the study relied on self-reported illness. Public online postings were used to recruit women in the healthy group. Upon completion of the study, all women were provided with a debriefing form and contact information. Women in the

Finding benefit in unexplained illnesses

DOI: 10.3109/10253890.2014.1001975

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Table 1. Demographic characteristics within each health group.


Age Illness duration (years) Household income Under $29,999 $30,000–59,999 Above $60,000 Education level No high school High school or some University University degree Relationship status Married Single In a relationship Widowed/divorced/separated

Healthy

Anxiety/depression

Other chronic illnesses

CFS/fibromyalgia

M ¼ 41.52, SD ¼ 9.74 N/A

M ¼ 39.11, SD ¼ 9.04 M ¼ 9.59, SD ¼ 8.38

M ¼ 50.32, SD ¼ 11.64 M ¼ 11.03, SD ¼ 9.01

M ¼ 48.37, SD ¼ 9.69 M ¼ 10.95, SD ¼ 6.91

27.4% 24.2% 48.4%

21.6% 37.8% 40.6%

20.0% 48.6% 31.4%

28.2% 23.1% 48.7%

0.0% 48.5% 51.5%

8.1% 43.2% 48.7%

2.9% 60.0% 37.1%

2.5% 50.0% 47.5%

42.4% 21.2% 21.2% 15.2%

37.8% 21.6% 37.8% 2.8%

57.1% 17.1% 8.7% 17.1%

47.5% 27.5% 17.5% 7.5%

illness groups were also given additional resources for support services. Women’s questionnaire responses were verified for validity by (1) determining that the Internet Protocol address was not replicated in survey submissions, (2) excluding any participant’s data completed in less time than considered reasonable based on preliminary studies and (3) authenticating that responses to pre-identified items were not random and that the pattern of responses observed was consistent. When women’s responses were verified, they were compensated with a five-dollar gift certificate. Statistics The statistical analyses were performed using IBM SPSS Statistics 20 for Windows (Armonk, NY: IBM Corp.). Analyses of health group differences for posttraumatic growth, and social support were performed using analyses of covariance (ANCOVA) controlling for age with Bonferonni post-hoc follow-up tests. Health group mean differences among stigma subscales were assessed using multivariate analyses of covariance (MANCOVA) controlling for age with Bonferonni posthoc follow-up tests. Hierarchical regression analysis was performed to determine whether the relation between social support and stigma was moderated by the specific health condition. Significant moderations were followed up by using a web utility for simple slopes (Preacher et al., 2006). In all regression analyses standardized scores were used. Statistical significance was determined at p50.05 (two-tailed).

scale asks respondents to rate the degree to which their social relationships are currently providing them with different forms of support including, guidance, reassurance of worth, reliable alliance, social integration, opportunity to provide nurturance and attachment. Total mean social support scores were used for analyses (Cronbach’s ¼ 0.89). Stigma Perceived stigma was assessed using a modified version of the Pain Stigma Scale (Lennon e al., 1989). Specifically, the scale was modified to address each of the illnesses of interest in the present investigation (i.e. CFS, fibromyalgia, osteoarthritis, rheumatoid arthritis, multiple sclerosis, depression and anxiety). Thus, any analyses involving this measure excluded participants who were in the healthy control group. This 22item scale assesses the degree to which participants believe others may think and act differently towards them due to their illness, and the consequences this could have on them. The scale is divided into four separate aspects of stigma including, attribution (e.g. ‘‘Many people assume that having [name of illness] is a sign of personal weakness’’, Cronbach’s ¼ 0.87), estrangement (e.g. ‘‘One problem with having [name of illness] is that people don’t believe that you really hurt’’, Cronbach’s ¼ 0.92), secrecy (e.g. ‘‘I’ve learned that it is best to keep the fact that I have [name of illness] to myself’’, Cronbach’s ¼ 0.79) and disclosure (e.g. ‘‘I feel it is my duty to help educate the public about problems involving [name of illness]’’, Cronbach’s ¼ 0.90).

Measures Demographics and medical history Demographic information included ethnicity, education level, income, current employment, relationship status and living arrangements. The medical history included details concerning women’s current and previous medical and psychiatric diagnoses, who had diagnosed them in relation to their current conditions (e.g. specialists) as well as current medications being used and treatments being received. Social support Perceived social support was assessed using the Social Provisions Scale (Cutrona & Russell, 1987). This 24-item

Posttraumatic growth inventory The posttraumatic growth inventory (Tedeschi & Calhoun, 1995, 1996) was used to assess positive changes experienced by women from living with their illness. This 21-item scale measures five dimensions of posttraumatic growth, including personal strength, new possibilities, appreciation of life, spiritual change and relating to others. Respondents rated the degree to which they had experienced a change on a six point Likert scale, ranging from zero (I did not experience this change as a result of my crisis) to five (I experienced this change to a very great degree as a result of my crisis). For each health condition the response options were modified to refer to the respective condition, and thus any analyses

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involving this measure excluded those who were in the healthy control group. Total posttraumatic growth scores were used for analyses (Cronbach’s ¼ 0.95).


Table 2. Percentage frequencies of coded positive and negative impacts among women with CFS/fibromyalgia and other chronic illnesses.


Perceived growth and meaning: qualitative analysis Coding and thematic analysis was conducted following the guidelines of interpretative phenomenological analysis using ATLAS.ti (Smith & Osborn, 2003). Responses were coded to depict the varied impacts of the illnesses individuals expressed. Reports of negative and positive changes as a result of living with the illness were assessed using questions developed by Davis & Morgan (2008), in which participants were specifically asked the extent to which their illness had a negative as well as a positive effect on their life goals and on their philosophy of life. Qualitative analyses were limited to the narratives of women in the CFS/fibromyalgia group and those in the other chronic illnesses group as they were the main comparison of interest in the current study. Each set of responses were read several times, first to make initial notes on each script, followed by an attempt to identify patterns across the narratives from which a set of themes were derived. A second rater was employed to code a subset (n ¼ 14) of randomly selected responses from both the other chronic illnesses group and the CFS/fibromyalgia group to examine whether (1) patterns or themes were either missed or not in agreement with the primary rater, and (2) to provide an interrater reliability score for the frequency of the various themes. An inter-rater reliability of ¼ 0.62 was obtained, which is considered to reflect substantial agreement between raters (Landis & Koch, 1977). Although the researcher’s own academic knowledge concerning this topic could have biased their explanations of the qualitative findings, as well as account for the emergence of certain themes, it was nonetheless thought that the knowledge might facilitate an understanding of women’s illness experiences. The qualitative analysis revealed that some of the positive impact themes that frequently emerged in the narratives (i.e. appreciation, compassion, goals, personal and interpersonal growth) were similar to that of previously established dimensions of posttraumatic growth (Tedeschi & Calhoun, 1995, 1996). Negative impacts were coded based on the recurrent themes which emerged from women’s responses and included negative changes to daily functioning, goals, interpersonal relationships, as well as personal negative impacts (see Table 2).

Results Social support and stigma A one-way analysis of covariance (ANCOVA) revealed that perceived social support differed across the groups, F(3, 145) ¼ 5.70, p50.01, 2 ¼ 0.109. Bonferroni follow-up comparisons revealed that perceived social support among women with CFS/fibromyalgia was lower than in healthy women but did not differ from those with other chronic conditions or a mental illness (Figure 1). A MANCOVA revealed a significant difference in the stigma dimensions as a function of group, Pillai’s Trace F(8, 208) ¼ 10.66, p50.001, 2 ¼ 0.291, and the subsequent individual univariate ANCOVAs indicated

Negative impacts daily functioning Negative impacts goals Negative impacts interpersonal Negative impacts personal Positive impact appreciation Positive impact compassion Positive impact interpersonal Positive impact personal No positive impact

CFS/fibromyalgia (n ¼ 40)

Other chronic illnesses (n ¼ 35)

50.0% 55.0% 30.0% 27.5% 10.0% 22.5% 10.0%* 27.5% 35.0%

54.3% 31.4% 34.3% 17.1% 24.3% 22.9% 31.4% 34.3% 31.4%

*p50.05.

that stigma attribution, F(2, 109) ¼ 31.38, p50.001, 2 ¼ 0.372, stigma estrangement, F(2, 109) ¼ 8.11, p50.01, 2 ¼ 0.133, stigma secrecy, F(2, 109) ¼ 8.93, p50.001, 2 ¼ 0.144 all varied as a function of the health condition. However, stigma disclosure did not vary as a function of the health condition F(2, 109) ¼ 2.27, ns. The follow-up comparisons indicated that stigma attribution was higher among women with CFS/fibromyalgia than in women with other chronic conditions, and women with a mental health condition reported significantly higher levels than those in the other chronic conditions group. It also appeared that perceived stigma estrangement was higher among women with CFS/ fibromyalgia than among women in the other chronic illness group and women with a mental health condition. Additionally, women with CFS/fibromyalgia reported levels of stigma secrecy comparable to that of women with other chronic illnesses, whereas those with a mental health condition reported greater secrecy than both of these groups (Figure 2). Moderating role of health group on social support and perceived stigma It was of interest to examine how social support might relate to perceived levels of stigma and the impact of health condition on these relationships. To assess this, separate hierarchical regression analyses were performed for each of the stigma dimensions as outcomes (secrecy, estrangement, attribution and disclosure). The CFS/fibromyalgia group and the other chronic illness group along with the standardized social support measure were entered on the first step, and the interaction between social support and the variable representing the two health groups was entered on the second step. Perceived social support was not associated with stigma estrangement, b ¼ 0.15, t ¼ 1.35, ns, but was associated with lower levels of stigma attribution, b ¼ 0.29, t ¼ 2.07, p50.05 and a greater willingness to disclose illness, b ¼ 0.40, t ¼ 2.48, p50.05. However, the analysis indicated that the relationship between social support and perceived stigma attribution, estrangement or disclosure was not moderated by health status. In contrast, a significant moderation of illness group was observed between social support and stigma secrecy, DR2 ¼ 0.05, DF(1, 70) ¼ 4.23, p50.05. In this regard, the regression analysis revealed that social support


DOI: 10.3109/10253890.2014.1001975

**

3.6

Figure 1. Mean (±SE) of perceived social support as a function of illness group. Perceived social support was lower among individuals with CFS/fibromyalgia than healthy women, **p50.01.

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** 3.5 3.4

Social Support

3.3 3.2 3.1 3 2.9 2.8 2.7 2.6

Figure 2. Mean (±SE) stigma across several subscales as a function of illness group. Stigma estrangement was higher among women with CFS/fibromyalgia than in women with a mental health condition or other chronic illnesses. Stigma attribution did not differ between women with a mental health condition in comparison to those with CFS/fibromyalgia, although women with CFS/fibromyalgia reported higher levels than those with other chronic illnesses. Stigma secrecy among those with CFS/fibromyalgia was comparable to that of women with other chronic illnesses, whereas those with a mental health condition reported greater secrecy than both of these groups. *p50.05, **p50.01, ***p50.001.

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CFS/Fibromyalgia

Other Chronic Illnesses

* **

Mental Illness

CFS/fibromyalgia

***

5

* ***

Other Chronic Illnesses Mental Illness

*** 4 Perceived Stigma


Healthy

3

2

1

0 Stigma Estrangement

was related to lower perceived stigma secrecy, b ¼ 0.34, t ¼ 2.59, p50.05 and that this relation was moderated by illness group, b ¼ 0.53, t ¼ 2.06, p50.05. To further examine the moderating role of illness group on the relationship between social support on stigma secrecy, 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 CFS/fibromyalgia displayed lower levels of perceived stigma at high levels of social support, but this relationship was not observed among women with other chronic illnesses. Comparable analyses revealed that significant moderations did not occur in the

Stigma Attribution

Stigma Secrecy

Stigma Disclosure

relation between social support and perceptions of stigma among the two highly stigmatized groups, namely individuals with mental health disorders and CFS/fibromyalgia. Posttraumatic growth & perceived meaning: quantitative and qualitative analyses Total posttraumatic growth scores varied as a function of health group, F(2, 109) ¼ 4.64, p50.05, 2 ¼ 0.080. Specifically, follow-up analyses revealed that the level of posttraumatic growth was lower among women with CFS/ fibromyalgia (M ¼ 2.39 ± 0.20) relative to that of other


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chronic illnesses (M ¼ 3.30 ± 0.21), whereas levels of posttraumatic growth among women with other chronic illnesses did not significantly differ from women with a mental health disorder (M ¼ 2.75 ± 0.21). The qualitative analyses confirmed many of the findings derived from the quantitative analyses, but also revealed several psychosocial features that differed between these disorders. To be sure, many of the feelings expressed were common irrespective of the illnesses, but there were several expressions of concern that were unique to those in the CFS/ fibromyalgia condition relative to that expressed by individuals with other chronic illnesses. Qualitative analysis revealed that reports regarding the negative impact on daily life functioning (e.g. ‘‘I had to stop working, which I enjoyed very much, my day to day living is limited due to extreme fatigue and muscle weakness’’) were equally common in the CFS/fibromyalgia (50.0%) and the other chronic illness group (54.3%; see Table 2), 2(1) ¼ 0.47, ns. Many participants reflected on their lives prior to developing their chronic condition, often recounting how their previous goals, careers and aspirations had been negatively affected by becoming ill. Women in the CFS/fibromyalgia group recalled a great sense of accomplishment prior to their condition and indicated in what ways CFS/fibromyalgia had negatively affected their goals and achievements (55.0%; e.g. ‘‘I was an elite athlete and I had to give up my dreams of succeeding in that area of my life because my body doesn’t react like a normal person’s body does to exercise’’ – Fibromyalgia). Women with other chronic illnesses likewise reported a sense of accomplishment prior to becoming ill and how this had negatively influenced these goals, although this was somewhat less frequently reported than in those with CFS/ fibromyalgia (31.4%), 2(1) ¼ 3.45, p ¼ 0.06. However, they not only reported the curtailment of these aspirations, but also how their prior accomplishments, which had been part of their identity, had been taken away as a result of becoming ill (e.g. ‘‘My business clothes gather dust now, my makeup has long since dried up, and my jewelry sits in the drawers untouched. Whenever I see a smart business woman . . . it breaks my heart and I think ‘that used to be me’. That ‘me’ was stolen from me. I had no choice in the matter.’’ – CFS & Fibromyalgia). These personal negative impacts were reported among women with CFS/fibromyalgia (27.5%) as well as those with other chronic conditions (17.1%), 2(1) ¼ 0.86, ns. In addition to redefining themselves in terms of goals and aspirations, women also reported how their illness had negatively impacted their views of themselves (coded negative personal impact, Table 2). Women also reported that their illness had negatively influenced their relationships with family and friends. Reports of negative interpersonal impacts were similar (30.0%) among women with CFS/fibromyalgia compared to women with other chronic conditions (34.3%), 2(1) ¼ 0.36, ns. These negative changes took on many forms for both groups, including women feeling as though they were unable to care for their family in the way they wished or that their relationships had suffered as a result of their illness. Some women in the CFS/fibromyalgia condition expressed a lack of understanding from individuals within their network, which may reflect some of the stigmatizing aspects of living with an illness that is often misunderstood (e.g. ‘‘Supports for people


with Fibro are very poor. People don’t sympathize with what they cannot see’’ – CFS & Fibromyalgia). Positive impacts and growth resulting from living with illnesses were also assessed and several themes emerged. Both groups expressed an increased sense of compassion for others as a result of living with their illnesses, 2(1) ¼ 0.04, ns. Likewise, they often expressed a new appreciation for life as a result of their illness (other illness ¼ 24.3%; CFS/fibromyalgia group ¼ 10.0%, 2(1) ¼ 4.67, ns). Although women frequently expressed how their illness had negatively affected their selfperceptions, particularly in comparison to their identity prior to becoming ill, many women still reported personal growth as a result of their illness experience (e.g. ‘‘I am learning so much about myself that I probably wouldn’t know if I hadn’t become ill. I am learning to be content with where my body is at, at any given moment.’’ – CFS & Fibromyalgia; Table 2). Interestingly, women with other chronic conditions were more likely to report a positive impact on their interpersonal relationships (31.4%) compared to women with CFS/fibromyalgia (10.0%), 2(1) 6.14, p50.05. Finally, when prompted to report how their illness may have had a positive impact on their lives, several women from both groups were unable to derive any positive meaning from living with their conditions (e.g. ‘‘This is where I am supposed to say all the benefits I have learned from going through a negative experience. Maybe other people. Not me.’’ – CFS & Fibromyalgia, Table 2).

Discussion In line with reports of the high levels of stigmatization ˚ sbring & experienced by those with CFS and fibromyalgia (A Na¨rva¨nen, 2002; Dickson et al., 2007; Looper & Kirmayer, 2004), in the current study women living with CFS/fibromyalgia reported high levels of stigma, exceeding that reported by women with a chronic, but more widely accepted physical illness. Specifically, feelings of estrangement from others as well as feeling that others attributed CFS/fibromyalgia to a personality flaw or psychological issue were particularly pronounced. We previously reported that women living with CFS/fibromyalgia also reported higher levels of unsupportive social interactions compared to women living with an autoimmune condition (McInnis et al., 2014). Together, these findings make it clear that women with CFS/fibromyalgia must contend with a social environment that is particularly aversive. In fact, aspects of stigma related to estrangement from others were higher than that observed in the mental illnesses group. Given that stigma experienced by those with mental health disorders has been considered to be the primary barrier to seeking help (Corrigan, 2004) raises the question as to whether stigma regarding CFS/fibromyalgia similarly limits help-seeking, consequently leading to poorer illness outcomes. Consistent with the stressor-appraisals made by women with CFS/fibromyalgia, these illnesses are often associated with stress-related biological alterations (Geiss et al., 2012; Powell et al., 2013). Women with CFS/fibromyalgia in the present investigation also perceived lower social support than did healthy women, which could be detrimental given that social support ordinarily serves to buffer against the negative



DOI: 10.3109/10253890.2014.1001975

effects of stressors (Cohen & Wills, 1985; Thoits, 2011). Perceptions of social support were also related to feelings of stigma secrecy (i.e. concealing their illness from others). In essence, in the presence of high levels of support, stigma secrecy was less apparent, but this was most notable among those with CFS/fibromyalgia. While these findings are simply correlational, precluding causal conclusions regarding the link between social support and CFS/fibromyalgia severity, it is significant that a weekly two hour social support intervention over 4 months significantly increased vitality and decreased fatigue among those with CFS (Jason et al., 2010). However, as observed in the current as well as in other studies (Anderson & Ferrans, 1997; Lewis et al., 1994; Schoofs et al., 2004), individuals with CFS/fibromyalgia frequently reported a lack of support, underscoring the importance of fostering the development of support networks for individuals with these illnesses. As predicted, women with CFS/fibromyalgia reported lower posttraumatic growth than did women with other chronic conditions. As mentioned earlier, it may be exceedingly difficult to experience positive growth when coping with unexplained illnesses as some of the key features that promote such growth may be lacking. For example, higher social support has been related to greater posttraumatic growth (Prati & Pietrantoni, 2009), which encourages narratives relevant to positive change; however, those with CFS/ fibromyalgia might lack the necessary supports that would ordinarily favor posttraumatic growth. In addition, active coping processes including, problem-focused coping, have been associated with greater posttraumatic growth (Scrignaro et al., 2010; Widows et al., 2005), but the limited information available about CFS/fibromyalgia may undermine the ability to engage in such coping. Some studies have also reported that greater depression is associated with less posttraumatic growth (Milam, 2006; Siegel et al., 2005), and it is significant that in the current study a majority of the women in the CFS/ fibromyalgia group reported concurrent diagnoses of depressive disorders in comparison to those with other chronic illnesses. Despite the lower levels of posttraumatic growth reported by women with CFS/fibromyalgia in comparison to those with other chronic conditions, qualitative analyses indicated that, in some respects, both groups were able to construe some benefits from their adversity, although the frequency of such reports was relatively modest. One reason for the low levels of posttraumatic growth observed could be due to the nature of the trauma. Specifically, dealing with a chronic condition is ongoing and as such, experiencing posttraumatic growth may be more challenging. These findings are consistent with other studies that reported limited benefit-finding among stigmatized groups in whom suffering was ongoing (Fernańdez et al., 2014). For instance, both groups in the current study reported a sense of personal growth as well as a new found compassion for others. In contrast, women with CFS/ fibromyalgia perceived fewer positive impacts on their interpersonal relationships. A synthesis of qualitative studies on individuals with CFS demonstrated that illness hardships worsened when the illness experiences were delegitimized by those around them and this discrediting was also accompanied by individuals isolating themselves in an effort to conceal the

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illness (Larun & Malterud, 2007). Such experiences limit the development of social relationships that could potentially act against the illness. Overall, the negative impacts women recounted were similar between the two groups and largely comprised those related to illness symptoms limiting their ability to complete daily routines and interfering with their quality of life in general. To an extent, women with CFS/fibromyalgia reported a somewhat high degree of achievement prior to becoming ill relative to women with other illness conditions, and the loss of these goals and aspirations were frequently reported as a negative illness impact. These accounts are in line with reports of a tendency for individuals with such illnesses to be described as ‘‘overactive’’ or ‘‘high achievers’’, which has been postulated as a possible contributing factor of CFS and fibromyalgia (Van Houdenhove et al., 2001) although they are heterogeneous disorders that likely have varied etiological factors, many of which probably involve biological components, that contribute to their development (Maes et al., 2012; Papadopoulos & Cleare, 2012; Schmidt-Wilcke & Clauw, 2011). Although the present findings highlight several unique factors that individuals with CFS/fibromyalgia must contend with, there are several limitations of this study that should be addressed. Of particular concern is that the study relied on patient reports that their diagnosis was made by a qualified physician. This is an issue for the entire sample, but particularly so among those with CFS/fibromyalgia as the diagnostic process is complex and often relies on excluding other possible illnesses (Haüser & Wolfe, 2012; Twisk, 2014). It is also the case that due to the relatively small sample size in each group, lack of power may have limited the detection of certain between-group effects. Another potential limitation concerns the cross-sectional nature of the study. For instance, it is not certain whether increased social support leads to lower feelings of stigmatization or whether those who are less stigmatized have a greater sense of social support. It is also possible that the levels of stigma observed in the current study may reflect an underestimation of what is actually representative of this population as a whole. In this regard, women were primarily recruited from support groups and as such may have already overcome some of the stigma associated with disclosing their illness in an effort to seek help. Conclusion The current data support the view that women living with CFS and fibromyalgia experience considerable stigma, in some cases greater than that experienced by other highly stigmatized groups (i.e. those with mental health disorders). It is premature to make causal attributions, but it is conceivable that feelings of stigmatization may be buffered by perceptions of support from others within this context, just as it is in others (Matheson & Anisman, 2012). Thus, for these women, interventions which target the promotion of positive social networks may be effective in attenuating some aspects of stigma, which could promote a greater willingness to seek help. In addition, compared to women with other more widely accepted chronic illnesses, those with CFS/fibromyalgia may be less likely to experience positive growth from their illness

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experiences, which could have important ramifications on adjustment to a chronic illness and the overall well-being among those with CFS/fibromyalgia.

Declaration of interest The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper. This research was supported by the Canadian Institutes of Health Research (CIHR) MOP-106591. H.A. holds a Canadian Research Chair in Neuroscience. R.J.M. is supported by the CIHR Frederick Banting and Charles Best Canada Graduate Scholarship.


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