RHEUMATOLOGY
Rheumatology 2012;51:347–353
doi:10.1093/rheumatology/ker342
Advance Access publication 16 November 2011
Original article
A combination of illness invalidation from the
work environment and helplessness is associated
with embitterment in patients with FM
Objectives. The aim of this study in employed people with FM was to test the hypothesis that embitterment is a function of the joint experience of invalidation from the work environment and helplessness
regarding one’s illness.
Methods. Sixty-four full-time (36%) or part-time (64%) employed patients with FM (60 females, mean age
45 years) completed the Illness Invalidation Inventory (3*I) to assess work-related discounting and lack
of understanding, the Illness Cognition Questionnaire (ICQ) to assess helplessness and the Bern
Embitterment Inventory (BEI) to assess embitterment. Hierarchical regression analysis was performed.
Results. Sixteen percent of the participants experienced embitterment levels in the clinical range. The
interaction or combination of discounting and helplessness (P = 0.02) and the combination of lack of
understanding and helplessness (P = 0.04) were associated with greater embitterment.
Conclusions. The construct of embitterment has substantial face validity and may result from a combination of invalidation and helplessness. Whereas helplessness is a common target of cognitive–behavioural
therapy, evidence-based interventions to redress invalidation and embitterment are needed. It is possible,
however, to target invalidation by educating people in the work environment about the consequences of
FM and patients’ valid needs for work that is manageable, given each patient’s specific health-related
limitations.
Key words: fibromyalgia, work, workload, psychological adaptation, embitterment, resentment, invalidation,
helplessness.
Introduction
FM is characterized by chronic widespread pain and the
presence of several other symptoms such as fatigue,
unrefreshed waking and cognitive symptoms [1]. These
symptoms limit patients’ ability to work, increases their
probability of work loss and sickness absence, and
yields adverse social and economic consequences for
1
Department of Clinical and Health Psychology, Utrecht University,
Department of Rheumatology and Clinical Immunology, University
Medical Center Utrecht, 3Department of Developmental Psychology,
Utrecht University, Utrecht, The Netherlands and 4Department of
Psychology, Wayne State University, Detroit, MI, USA.
2
Submitted 31 March 2011; revised version accepted
13 September 2011.
Correspondence to: David Blom, Department of Clinical and Health
Psychology, Utrecht University, PO Box 80140, 3508TC, Utrecht,
The Netherlands. E-mail: [email protected]
patients, employers and society at large [2–4]. It is generally considered important to support patients with rheumatic diseases in their attempts to remain involved in the
workforce [5]. Supporting patients in dealing with their
interpersonal and emotional problems is critical in this
process [6, 7], and one interpersonal, mental state that
may hinder people’s ability to work productively is a construct that has been termed embitterment. This reaction
typically occurs in response to critical social events that
are normal, but not everyday, such as conflicts at work [8].
Both clinical and vocational professionals regularly encounter patients who view themselves as victims of external factors, have difficulty coping, experience a sense of
resentment and injustice (e.g. with respect to employers
or social agencies) and tend to resist help offered [9]. This
state of embitterment appears to emerge as a psychological response when patients feel both invalidated and
! The Author 2011. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: [email protected]
CLINICAL
SCIENCE
Abstract
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David Blom1,2, Sander Thomaes3, Marianne B. Kool1,2, Henrie¨t van Middendorp2,
Mark A. Lumley4, Johannes W. J. Bijlsma2 and Rinie Geenen1,2
David Blom et al.
Patients and methods
Patients
Research participants were 64 patients with FM. Inclusion
criteria were being employed, at least 18 years of age
and diagnosed by a rheumatologist according to the
1990 classification criteria of FM [18]. Patients with FM
of the University Medical Center Utrecht and the
Diakonessenhuis Utrecht, The Netherlands, were recruited
to participate in a questionnaire study. Rheumatologists
sent an information sheet and consent form to eligible
patients, and consenting patients received a packet
of questionnaires. Of 425 patients who were contacted,
201 (47%) patients responded. Of them, 167 (83%)
patients provided complete data. For the present
study, we analysed the data of 64 FM patients who
were employed. Table 1 presents the demographic
characteristics of the patients. The study was approved
by the medical ethics committee of the University
Medical Center Utrecht.
Instruments
Invalidation was measured using the work environment
scale of the Illness Invalidation Inventory (3*I) [17]. This
inventory includes items assessing discounting (five
items; e.g. people at work think I can work more than I
do) and lack of understanding (three reversed items; e.g.
people at work understand the consequences of my
348
TABLE 1 Characteristics of patients (n = 64)
Gender: female, n (%)
Age, mean (S.D.), years
Marital status, n (%)
Single
Married/partnered
Divorced
Widowed
Education level, n (%)
Primary
Secondary
Tertiary
Years with symptoms, mean (S.D.)
Years since diagnosis, mean (S.D.)
Employment status, n (%)
Full-time
Part-time
Invalidation, mean (S.D.)
Discounting
Lack of understanding
Helplessness, mean (S.D.)
Embitterment, mean (S.D.)
60 (94)
45.0 (11.3)
9
48
5
1
(14)
(75)
(8)
(2)
1 (2)
43 (67)
19 (30)
12.3 (8.8)
4.5 (5.7)
23 (36)
41 (64)
2.4
2.8
2.1
1.3
(0.9)
(0.8)
(0.6)
(0.9)
Invalidation can range from 1 to 5, helplessness from 1 to 4
and embitterment from 0 to 4.
health problems or illness). Participants indicated on a
5-point scale ranging from 1 (never) to 5 (very often) how
often during the past year people in their work environment reacted to them in the described way. Cronbach’s
a for discounting (a = 0.88) and lack of understanding
(a = 0.74) were good.
Helplessness about the consequences of one’s illness
and daily functioning was measured using the helplessness scale (six items) of the Illness Cognition Questionnaire (ICQ) [19]. A sample item is my illness frequently
makes me feel helpless. The items are rated on a
4-point scale from 1 (not at all) to 4 (completely). Cronbach’s a for helplessness in our study was good: a = 0.84.
Embitterment was measured using the Bern
Embitterment Inventory (BEI) [20]. Participants rated their
agreement with 18 statements on a 5-point scale ranging
from 0 (does not apply) to 4 (fully applies). The broad
domain, total embitterment, includes four subordinate
domains: emotional embitterment (e.g. it fills me with bitterness to think of my unfulfilled wishes); performancerelated embitterment (e.g. in the end my achievements
are not really appreciated); pessimism/hopelessness
(e.g. I have a rather pessimistic stance towards life);
and misanthropy (e.g. sometimes I feel hatred towards
mankind or a part of it). In the present study, only total
embitterment was analysed. Cronbach’s a for total embitterment was good: a = 0.95.
Statistical analysis
The analyses were performed with SPSS for Windows
16.0. Significance level was set at P < 0.05 (two-tailed).
The score distribution of all variables was normal.
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helpless [8, 10–12]. Invalidation as well as helplessness
are prompted by the nature of FM. The features of FM
are less visible than those of other rheumatic diseases.
Invalidation is provoked by the relative invisibility of symptoms such as pain, stiffness and fatigue. Moreover, more
in the case of FM than in other rheumatic diseases, FM is
characterized by lack of pathological evidence and
difficulty in assessing patients’ health. Colleagues and
employers may, for example, deny the seriousness of
FM, fail to understand symptom fluctuations or think that
the patient should have a tougher attitude [6, 13]. The
symptoms of FM fluctuate independently of a known
pathological process and there in no effective pharmacological treatment against these symptoms. Helplessness
is typically provoked by the uncontrollable and unpredictable nature of symptoms as detailed in learned helplessness theory [14, 15].
Helplessness can be treated with cognitive–behavioural
techniques. Feelings of invalidation can be targeted by
educating the patients’ social environment about the consequences of rheumatic illnesses and by empowering
patients to cope with invalidation [16, 17]. Therefore, it is
important to help patients and their significant others
develop insight into these hypothesized determinants of
embitterment to prevent and overcome this detrimental
condition. The goal of the present study of employed
patients with FM was to test the hypothesis that embitterment is associated with the joint experience of invalidation
from the work environment and helplessness regarding
one’s illness.
Invalidation at work and helplessness
Results
Descriptives
The means of discounting, lack of understanding, helplessness and embitterment are shown at the bottom
of Table 1. Sixteen percent of the patients experienced
embitterment levels above the specified cut-off.
This percentage is high as compared with two other
groups who filled out the Dutch translation of the BEI.
Using the specified cut-off value of 2.2 as a criterion
[12], 3% of 30 working patients with RA and 8% of 159
research participants from the general population experience embitterment (David Blom, Utrecht University,
unpublished work).
Correlations
The correlation between invalidation and helplessness
was modest: r(62) = 0.38 (P < 0.01), and lack of understanding did not correlate significantly with helplessness:
r(62) = 0.15 (P = 0.23). As hypothesized, the two dimensions of invalidation as well as helplessness were moderately to strongly associated with embitterment. The
correlations of discounting, lack of understanding
and helplessness with embitterment were r(62) = 0.47
(P < 0.001), r(62) = 0.28 (P = 0.03) and r(64) = 0.56
(P < 0.001), respectively.
Multiple regression analyses
The results of the regression analyses predicting embitterment from the invalidation dimensions (discounting and
lack of understanding), helplessness and their interaction
are shown in Table 2. In Block 1, more embitterment was
shown to be independently predicted by more discounting
(t = 2.72, P = 0.009) and by more helplessness (t = 3.77,
P < 0.001) in the regression with discounting and—not
significantly—by more lack of understanding (t = 1.82,
P = 0.07) and more helplessness (t = 5.02, P < 0.001) in
the regression with lack of understanding. In Block 2,
the interaction of discounting and helplessness (t = 2.33,
P = 0.02) and the interaction of lack of understanding and
helplessness (t = 2.05, P = 0.04) predicted a significant
proportion of individual differences in embitterment.
Fig. 1 shows these interactions. At low levels of helplessness (1 S.D. below the mean), a small difference in embitterment (d = 0.28) was observed between people low and
high on discounting, whereas at high levels of
TABLE 2 Hierarchical regression analyses predicting embitterment in patients with FM from invalidation (discounting on top, lack of understanding on bottom), helplessness and their interaction
Predictor variable
Discounting
Block 1
Discounting
Helplessness
Block 2
Discounting helplessness
Lack of understanding
Block 1
Lack of understanding
Helplessness
Block 2
Lack of understanding helplessness
b (S.E.)
b
0.33 (0.12)
0.66 (0.17)
0.30**
0.42***
0.36 (0.15)
0.24*
0.24 (0.13)
0.79 (0.17)
0.20
0.51***
0.35 (0.17)
0.22*
Adj. R2
0.35***
0.39*
0.30***
0.34*
Adj. R2 with significance levels of F-change. *P < 0.05, **P < 0.01, ***P < 0.001. Adj. R2: adjusted R2.
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349
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The percentage of patients experiencing high embitterment was examined; the cut-off value was set at 2.2. This
value is proposed by the creators of the BEI as a preliminary criterion to differentiate between people who may
and may not need clinical attention because of their embitterment [12]. The percentage of highly embittered patients was compared with the percentages of high scorers
in two other groups that filled out the Dutch translation of
the BEI: working patients with RA and people from the
general population. Before analysis we tested whether
gender, age, marital status (married/partnered vs not married/partnered), education level, years with symptoms,
years since diagnosis and employment status were correlated with embitterment, but none of these potential
covariates was (all P > 0.25). To test our hypothesis that
the combination of invalidation and helplessness predicts
embitterment, we computed zero-order correlations and
performed two hierarchical regression analyses for discounting and lack of understanding, i.e. the two components of invalidation. After centring of the invalidation and
helplessness variables [21], in Block 1, helplessness and
invalidation were entered, and in Block 2, the helplessness invalidation interaction was entered. To interpret
significant interactions, regression lines for individuals
with low ( 1 S.D.) and high (+1 S.D.) levels of invalidation
were plotted for low ( 1 S.D.) and high (+1 S.D.) levels of
helplessness [22]. The magnitude of the effect of invalidation for low and high values of helplessness was indicated
with Cohen’s d effect sizes, with values of 0.20, 0.50 and
0.80 representing small, medium and large effects,
respectively [23].
David Blom et al.
FIG. 1 Embitterment (standardized scores) predicted by helplessness combined with (a) discounting and (b) lack of
understanding.
Discussion
Among patients with FM, invalidation from the work environment, helplessness, and especially the combination of
invalidation and helplessness were independently associated with greater embitterment. Unique features of our
study are that it concerned the actual experience of patients who are employed and that psychosocial rather
than functional problems in the work situation were studied. Although our study indicates that the combination
of work-related invalidation and general helplessness are
potentially harmful, leading to embittered patients, the
cross-sectional design prohibits explicit conclusions
about temporal or causal relations of invalidation and
helplessness with embitterment.
The occurrence of helplessness in patients with FM may
be explained by FM being shrouded in uncertainty regarding its pathological substrate, prognosis and treatment.
The invalidation experiences may be due to FM being difficult to validate using laboratory findings and visual signs
of physical deformity [17, 24]. The lack of evidence for
350
the genuineness of symptoms and reduced work ability
enhances the potential for stigmatization of FM [25, 26].
Our main hypothesis about the possible determinants of
embitterment was supported. Among patients with FM,
the combination of illness invalidation and helplessness
is associated with embitterment. The concept of moral
judgements may be important for understanding this finding [27]. Invalidation, particularly in the context of
work and disability benefits, questions the credibility of
patients and casts a shadow over their personal moral
attitudes [25]. Embitterment, then, may result from the
perceived threat to the patient’s moral integrity caused
by feelings of invalidation and helplessness. The embittered patient tries to secure this integrity by applying a
rigid view of right and wrong: the self is perceived as an
innocent victim, whereas wrongdoers such as employers
or colleagues are deemed morally wrong. Also, there
often is an ongoing effort to convince others of the magnitude of the inflicted injustice [9–12]. Our findings suggest
that embitterment is present in a proportion of employed
patients with FM, and that this embitterment especially
occurs when both helplessness and work invalidation
are high.
Either invalidation or helplessness can weaken the patients’ ability to overcome work-related challenges such
as managing working conditions, communicating impairments, requesting and receiving modifications or help, and
solving interpersonal and emotional difficulties [6, 28–30].
However, the difficulties are particularly acute when work
invalidation combines with general helplessness to yield
the embittered employee: the embittered patient’s tendency or urge to cling to his or her sense of victimhood
interferes with actively managing working conditions [12];
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helplessness (1 S.D. above the mean) the difference between patients low and high on discounting was large
(d = 1.13) (Fig. 1a). Similarly, at low levels of helplessness,
the difference in embitterment between people low and
high on lack of understanding was trivial (d = 0.09), whereas at high levels of helplessness the difference between
patients low and high on lack of understanding was large
(d = 0.81) (Fig. 1b). Thus the combination of high invalidation and high helplessness was predictive of high
embitterment.
Invalidation at work and helplessness
www.rheumatology.oxfordjournals.org
sample size was relatively small for our regression
model with three predictors. With the sample size of
64 and three predictors in the regression model, an
effect size (f 2) of 0.19 could be examined (a = 0.05,
1 b = 0.80), which is in between a moderate (f 2 = 0.15)
and large (f 2 = 0.35) effect size [39]. Fifthly, to be able to
assess experiences of patients we relied on self-report
measures. Future studies should have longitudinal and
experimental designs, address potential confounders
such as depression and illness cognitions and include
objective outcomes such as work disability and unemployment rates to replicate and extend the present
findings, and to gain insight into the initiation, mediation
and perpetuation of embitterment in employed patients
with FM.
To conclude, the construct of embitterment has substantial face validity, and its relevance to employee health
and productivity is provocative. Clinicians working in occupational health recognize embitterment as a prevalent
and heavy burden to both the patient and work environment [9], and knowledge of the conceptual underpinnings
of embitterment can direct efforts to reduce it. Whereas
helplessness, invalidation and embitterment could be
therapeutically targeted in cognitive–behavioural therapy,
another approach is to target invalidation by educating
people in the work environment about the consequences
of FM and about patients’ valid needs for work that is
manageable, given each patient’s specific health-related
limitations.
Rheumatology key messages
One out of every six employed FM patients experiences embitterment that may need clinical
attention.
. The combination of work-related invalidation and
helplessness is associated with embitterment in
patients with FM.
. The provocative relevance of embitterment to employee health and productivity calls for intervention
strategies.
.
Acknowledgements
We are very grateful to the research participants and to
the patient representatives, Paulien Vermaas and Miranda
de Jong, for their advice.
Funding: The work was supported by the Dutch Arthritis
Association (grant number DAA 09-1-401).
Disclosure statement: The authors have declared no
conflicts of interest.
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