Chronisch Vermoeidheidssyndroom: diagnose, behandeling en ...

72 Chronic Fatigue Syndrome KCE reports 88
5.2.2 Patients relations with others
5.2.2.1 Social relations
CFS patients, among them a lot of women, felt they were stigmatized. Firstly, their
moral characters were called into question due to the absence of visible external signs
of the illness and negative diagnosis tests. Many patients believed that evident external
symptoms would have enhanced their credibility. Moreover, the diagnosis, difficult to
establish came in some cases very late. The contacts with the social insurance office, for
example, were often experienced as problematic (nonchalance and doubt about patients
credibility and moral attitude) due to the condition not yet having been verified with a
diagnosis. Patients felt being accused of lying about their distress and trying to avoid
their duties, especially in relation to work. 155
A lot of patients experienced a significant decrease in their social life and in time spent
in recreational activities or hobbies. CFS patients often lost friends and the support of
their family. Decreased social and recreational functioning may be associated with high
rates of mood disturbances. 161 In some cases, illness was described as a reason for
divorce or separation with family members. 159
5.2.2.2 Relations with doctors and other caregivers
PATIENTS’ POINT OF VIEW
In Schoof’s study, interviewees indicated how many healthcare providers lacked
knowledge about their condition or did not believe in. They were really frustrated when
healthcare providers were uninformed. 156
Patients also expressed that their credibility had been questioned by the caregivers, in
particular by doctors, often after tests and other examinations did not indicate any
pathological problems. 154 While doctors were positively disposed prior to the test
results, they adopted sceptical attitudes when negative test results were received. Some
doctors, in advance and without having carried out proper examinations, categorized
patients’ problems as fictitious or related to psychological reasons, 155 thinking patients
were lazy or irresponsible. 156
Moreover, sufferers described their experiences of being denied healthcare and
legitimacy through bureaucratic categories of exclusion as dependent upon their lack of
biological facts. 160 In USA, the American biomedical system demands disease categories
(International Classification of Diseases) before compensation, and diagnosis before
treatment. Consequently, without codes, people are at risk to be abandoned out of
reach of any social safety net. Without clear definition, insurance companies, for
instance, can recategorize illnesses arbitrarily as physical or mental, with the advantage
to them that they can pay less for classified mental illnesses. 160
In UK, a study conducted among CFS patients referred to a specialist clinic reported
that two-thirds of all interviewees (N=68 patients) were dissatisfied with the quality of
care they received. 163 These patients described delay and confusion over diagnosis.
Whereas patients attributed their symptoms to a physical cause, doctors believed CFS
to be psychological or even psychiatric. Such disagreement led to dissatisfaction over
diagnosis and treatment. Patients considered medical advices consequently inadequate
or conflicting and felt doctors dismissive, sceptical or openly disbelieving. 163 Even in the
patient support literature, patients considered the mention of psychiatric disorder as a
dismissal of their complaints. 84
PHYSICIANS’ POINT OF VIEW
Asbring and Närvänen studied physicians perspectives on CFS patients. 164 They
interviewed 26 physicians who all had some experience of either CFS. Firstly, physicians
emphasized the distinction between a disease and an illness. They expressed scepticism
for conditions characterised by a lack of objective measurable values that would make it
possible to establish the cause of the condition, i.e. which cannot be characterised as a
disease. CFS which cannot be verified from objective measurable values was defined as
illness and thus considered as less threatening than health problems with disease status.
CFS symptoms were viewed by physicians to be ones that can be lived with.