Do You Believe ME?
Gender Difference in Diagnostic Experience for Those Suffering with Myalgic Encephalitis
Lucy Skingle 12258636
MSc Medical Anthropology and Sociology Supervisors: Dr. R.P.M Gerrets and Dr. H.J. Hiddinga
Table of Contents
Acknowledgements ... 3 1. Introduction ... 4 2. Context ... 8 2.1 ME a Contested issue ... 8 2.2 ME in the United Kingdom ... 8 2.3 Diagnostic Difficulty ... 10 2.4 ME, Gender and Delegitimisation ... 11 3. Theoretical framework ... 14 3.1 Symbolic interactionist perspective and self ... 14 3.2 Loss of self ... 15 3.3 The Sick Role, Stigma and Legitimacy ... 16 3.4 Uncertainty ... 17 3.5 Shame and Guilt ... 19 4. Methodology ... 21 4.1 Sample ... 21 4.2 In-depth interviews ... 22 4.3 Limitations ... 24 4.4 Reflexivity and Positionality ... 24 4.5 Ethical considerations ... 25 Findings ... 27 5. Do you believe ME? ... 28 5.1 Pre-diagnosis ... 30 5.2 Diagnosis ... 36 5.3 Post-diagnosis ... 38 5.4 Conclusion ... 43 6. What is wrong with ME? ... 45 6.1 Pre-diagnosis ... 47 6.2 Diagnosis ... 51 6.3 Immediate Post-diagnostic period ... 55 6.4 Post-diagnosis ... 58 6.5 Conclusion ... 61 7. Is the problem ME? ... 63 7.1 Guilt ... 64 7.2 Shame ... 67 7.3 Conclusion ... 72 Conclusion ... 75 Bibliography ... 80Acknowledgements
I would like to thank a number of people for their help and support which made this thesis possible. First I would like to show my appreciation to my supervisors Rene and Anja, without their support and guidance I would not have been able to write this thesis. I would also like to thank my participants it was an honor to hear their stories and I respect and appreciate their openness in speaking to me. I would like to thank Laurie, who provided me the necessary distractions, a cat to cuddle and many, many snacks. Lastly, I would like to thank my family and friends for their support and interest in my research making this a really enjoyable experience.
I would like to dedicate this thesis to my mum. Your unconditional support and belief has allowed me to cope with ME. You provided me so much happiness when times were otherwise bleak. I would not be here today without you.
1. Introduction
The Case of ME
Myalgic Encephalitis (ME) or Chronic Fatigue Syndrome (CFS) is a contested chronic illness with the most prevalent symptom being overwhelming fatigue and the inability to recuperate with rest. Patients can experience a variety of symptoms, including cognitive functioning issues, muscle pain, swollen lymph nodes, sleeping difficulties, among many others, fluctuating in severity from patient to patient (nhs.uk, 2017).
The condition disproportionately affects women, with 80% of the UK diagnosed population being female (Meresearch.org.uk, 2015). Although the condition can have severe debilitating consequences, ME patients are in a constant struggle for legitimacy of suffering due to the conditions’ etiological uncertainty. The condition is largely described as psychosomatic or ‘biomental’ (Dumit, 2006, p. 577). Sufferers also have to grapple with being called into question on the veracity of their suffering; through accusations of malingering and the trivialisation of the severity of symptoms, through framing of symptoms as manifestations of ordinary fatigue due to the strenuous nature of everyday life (Åsbring and Närvänen, 2002; Cooper, 1997; Richman and Jason, 2001). […] When every muscle aches and exercise brings on a dose of multi-organ ‘flu it hurts to know some shrinks hypothesize malingering... hysteria... Would you choose life confined to ten steps by fourteen, maligned, redacted, spurned, unknown, unseen? Trish Davis (2016) Literary Art from the #MillionsMissing
I will be referring to the condition as ‘ME’. ‘Chronic fatigue syndrome’ or ‘CFS’ has been argued to be a part of the attempts to construct the condition as psychological and trivial and many sufferers find it stigmatizing (Cooper, 1997, p. 188), ‘Myalgic Encephalitis’ or ‘ME’ has more medical, somatic connotations (demonstrated in the image below) and is the preferred term of the majority of those suffering with the illness (Doerr and Nater, 2017, p. 88).
ME is a condition that I personally have a vested interest in. At the age of fourteen I was diagnosed. Having experienced the diagnostic process and living with the condition resulted in a fascination with how those with contested illnesses navigate their lives.
My personal experience with ME continues to resonate with others I have spoken with, the idea that the condition is either just people being tired or that it is due to a psychological illness is blatant when trying to navigate social situations when you tell people that you have ME. Those who do not have the condition or have someone close to them that has the condition frequently respond with comments like “oh what’s that? Is it the one where you fall asleep randomly?” the conversation largely results in suggestions to get more sleep, try yoga, eat better and do more exercise. It is my encounter with the condition, the diagnostic process, speaking to other sufferers of ME and also speaking to those who do not have the condition that have sparked my interest in the patient experience.
The diagnostic process of ME proves particularly difficult for both the clinician and the patient (Woodward et al., 1995). Clinical guidelines state that to diagnose a patient with ME they must present disabling fatigue which is unrelieved by rest, experienced for a period longer than four months in addition
to exhibiting multiple of the following symptoms; Muscle/joint pain, headaches, sleeping difficulties, sore throat without swelling, cognitive functioning difficulties, dizziness, nausea, heart palpitations, flu-like symptoms and the worsening of these symptoms with physical/mental exertion (Nice.org.uk, 2007). However, not all patients present with all symptoms and they can vary greatly in type and severity from patient to patient (nhs.uk, 2017). The absence of determinable biomarkers, and the fluctuation of symptom type and severity among patients, pose difficulties in diagnosis on behalf of the physicians. Particularly due to the lack of objective and scientific indicators ME presents. Therefore, some clinicians are reluctant to medicalize ME through diagnosis due to the possibility of the condition being purely ‘ordinary’ fatigue caused by over exertion (Woodward et al., 1995, p. 326), a psychological illness or a form of hypochondriasis, malingering or exaggeration (Åsbring and Närvänen, 2002). The absence of diagnosis becomes an issue to patient wellbeing (Bülow, 2008, p. 128). The diagnostic search has previously been described as a ‘pilgrimage’ of medical investigation, with the veracity of one’s suffering being questioned. The unrelenting search for answers and explanations of symptomological experience, which compounds to create a clinical experience described by patients as virtually as arduous as the actual illness (ibid).
The delegitimising experiences of psychologisation and trivialisation are reported to be the most detrimental and stigmatising aspects of living with ME, to the extent of questioning one’s own physical symptoms and one’s sanity (Dumit, 2006). The psychologisation of ME refers to the interpretation and communication of the condition as being a result of psychological dysfunction. Another consequence of the psychological framing of ME is the disruption of sense of self, identity and morality (Åsbring an Närvänen, 2002, p. 152), because a sufferers’ preconceived conception of their own sanity can be called into question and replaced by the possibility of the condition’s physical manifestations being ‘all in their head’ (Dumit, 2006, p. 580).
The gender disparity in psychologising ME is of particular interest, with one study conducted in Australia suggesting that 85% of women, in comparison to 30% of men were informed that their symptoms were of psychological origin (Woodward et al., 1995, p. 327). Although this study was conducted over twenty
years ago there has been little attention paid to gender disparity in the following years. Reports of feeling dismissed, disbelieved and accused of malingering by practitioners are also far more prevalent among female patients, labeled as ‘bored housewives’ or ‘depressed adolescents’ (Cooper, 1997, p. 190).
I argue there has been a lack of investigation into the possibility of a gender difference in the medical and illness experience of ME. Therefore, I wanted to investigate the prospect of this disparity in addition to how the diagnostic experience can affect patients’ wellbeing, and sense of self. My research question is as follows:
What are the gender differences in diagnostic experience for patients with ME and how does this affect the sufferer?
I have intended to answer this question through an analysis of the in-depth interview data I have collected from ME patients in the UK. A symbolic interactionist framework has allowed me to explore the way in which interaction with the diagnostic process and medical professionals may have implications on patients’ sense of self.
In my first empirical chapter I will explore how instances of psychologisation, trivialisation and questioning of suffering, can cause a doubting of reality on the part of the patient, which could contribute to a devalued sense of identity. The following chapter concerns how uncertainty in illness and diagnostic experience has a part to play in the arduous nature of identity management for those with ME with reference to the concept of ‘loss of self’ (Charmaz, 1983).
The first two empirical chapters are structured chronologically, beginning from the onset of patient symptoms, through to their most recent accounts of their illness experience. The final data chapter departs from this structure and acts as a reflection of the most prevalent resulting theme I encountered of patients’ experience, guilt and shame.
2. Context
2.1 ME a Contested issue
Medicalisation is a process by which something becomes of medical concern through the definition of it as a medical problem (Conrad, 2005). In a society where medicalisation is argued to be encroaching upon many aspects of life that previously were not regarded to be of medical concern (Moynihan et al., 2002). Some conditions are still neglected and are ‘incompletely biomedicalized’, namely contested conditions (Dumit, 2006, p. 579). To be subsumed into the medicalised realm an ailment has to be considered worthy and undergo the process, resulting in the condition being understood within a medical framework (Conrad, 2005). The contested illnesses include other conditions such as Fibromyalgia, Multiple Chemical Sensitivity, and Gulf War Syndrome among many other illnesses that are heavily debated medically, popularly and politically (Dumit, 2006).
Dumit (2006) states, “one must suffer in code in order to be suffering in fact, or one does not suffer at all” (p. 580), exemplifying how lack of clarity and classification within biomedical framework constructs legitimacy and illegitimacy. Those suffering outside the understanding of contemporary medicine within Anglo-American society that is dominated by biomedical rigidity are constructed to not be legitimately suffering (ibid).
The contestation as a result of undetermined etiology, lack of opportunity for therapeutic intervention, indeterminate diagnostic protocols, and the continuing debate on whether the affliction is somatic, psychological or psychosomatic, provides the opportunity for ME to be called into question (Bülow, 2008). Problems arise when suffering with contestation; those suffering outside of understandable biomedical parameters are perceived to be suffering illegitimately (Dumit, 2006). 2.2 ME in the United Kingdom The National Institute of Health and Care Excellence (NICE) in their assessment of ME prevalence, stated that around 260,000 people within the UK have the
condition, between 0.2% and 0.4% of the UK population (2020 health and Optimum Health Clinic Foundation, 2017). Similarly to other countries the condition affects far more women than men (Meresearch.org.uk, 2015). In the UK, ME and its origin is disputed by clinicians, psychiatrists and scientists, pervaded by cultural and social opinion. ME also becomes an issue of morality. Continual sedentariness of individuals with ME is troubling due to the conceptualisation of indolence and inactivity within the western Anglo-American realm as a moral transgression (Karfakis, 2013, p. 21)
Within clinical practice in the UK the assumption of patients with ME having a psychological or psychosomatic condition has been argued to be due the inability to scientifically discern the origin or manifestation of the condition through clinical tests, resulting in the dismissal of patients’ claims of suffering on the part of the General practitioner (Horton-Salway, 2001). These responses to patients of being dismissed and disbelieved and interpreted to have a psychological condition are not all that surprising when you look at the opinions of some of the leading ME researchers. Simon Wessely, a scientist at King’s College London, rejects that there is any scientific evidence of a somatic pathology in ME patients, explaining the condition as the same as neurasthenia1; “Diagnostic confusion is bound to arise since the nineteenth-century term neurasthenia’ remains in the Mental and Behavioural Disorders chapter under Other Neurotic Disorders (F48.0). Neurasthenia would readily suffice for ME” (David and Wessely, 1993, p. 1247). The advised treatments for ME also reflect an assumption of psychosomatic or psychological origin of the condition, Cognitive Behavioral Therapy (CBT), Graded Exercise Therapy (GET), medications such as antidepressants and pain killers may also be prescribed, in addition to advised lifestyle changes (nhs.uk, 2017).
ME in the UK, much like in the rest of Western Europe and North America is heavy disputed and not much has been settled on in relation to its etiology, treatment methods and prognosis (Cooper, 1997). The literature and research from a UK context in this area is limited, particularly in relation to patient experience. Due to this shortage it becomes difficult to discern if there are
1 A disorder considered to be due to nervous exhaustion, and from psychological origin
specific geographically bound differences between the patient experiences in the UK comparable to those in other countries where the research is more prevalent. Due to this limitation, to inform my analysis of my research question I will also be using scholarly literature that has been produced in other countries that have similar attitudes towards ME, treatment methods and encounter diagnostic difficulty.
2.3 Diagnostic Difficulty
Diagnosis is central to medical practice, can organise illness; defining treatment options and to allowing a patient to attain services to alleviate their suffering (Jutel, 2009, p. 279). Diagnosis as a form of categorisation envelops a bare complaint of the layperson into the jurisdiction of medicine, providing a legitimating function (Freidson, 1972). A diagnostic label, even if said label has the potential to be stigmatising still has a positive influence on patient wellbeing, as it affords reasonable explanation for symptoms and suffering (Woodward et al., 1995). Diagnosis has been described as the most helpful and legitimising event to occur in the illness path of those with ME (Bülow, 2008). The aforementioned ‘pilgrimage’ of medical investigation can add to the idea that the patients’ claims of suffering are not legitimate, contested through the lack of a medical definition (ibid, p. 128) as “being diagnosed gives permission to be ill” (Jutel, 2009, p. 278). The act of diagnosis alleviates uncertainty. The implications of a diagnosis, regardless of if they are positive or negative removes a level of medical uncertainty and in its place informs a more structured narrative (Rosenberg, 2002).
Malterud (1999) argues that within a clinical context scientific knowledge holds more authority than patient complaint: “symptoms are subordinate to findings, which are believed to be objective. Indirect evidence, as mediated by medical technology, seems to constitute to medical signs a stronger validity than direct evidence from the voice of the patient” (p. 280). In relation to ME this would make the diagnostic process arduous to navigate, as there is no objective, medical indicator or biomarker that could conclusively exhibit that an individual has the condition.
The absence of an ME diagnosis has been reported to have detrimental effects as there is no explanatory framework for suffering; “Sufferers found that their social position was eroded, their social identity devalued and stigmatised” (Cooper, 1997, p. 203). There is apprehension on the part of clinicians in diagnosing ME, as there is anxiety in inciting a ‘disabling self-fulfilling prophecy’, that could occur when legitimising what some perceive as a ‘fashionable epidemic’ causing patients to pander to their symptoms that may be manifestations of fatigue purely caused by overexertion (Woodward et al., 1995, p. 326).
The diagnostic difficulty of ME presents an issue for all who are afflicted. As the condition does not comply with objective measurement the diagnostic process can be arduous and lengthy (Bülow, 2008). What I am interested in with reference to this process is how there may be a possible disparity between male and female patients in the level of difficulty they encounter. In the absence of findings that indicate a gender difference, the arduous nature of the diagnostic process and ME is still an important area for study due to its effect on patient wellbeing.
2.4 ME, Gender and Delegitimisation
Rosenberg (2002) contends that conditions not yet fully understood by medicine in contexts where a rigorous biomedical framework dominates healthcare, become the burden of psychiatry. Psychiatric diagnoses hold implications of personal accountability for suffering. Physical manifestations of psychological distress are coupled with the assumption that patients may have some control of the affliction and consequentially culpable (Jutel, 2011). Conversely conditions considered biological in nature are not usually assumed to be under the control of the sufferer (ibid).
The psychologisation of ME has been reported by patients to be incredibly trivialising and stigmatising. Contributing to delegitimisation of ME, which is to the detriment of patient wellbeing (Åsbring and Närvänen, 2002). Having symptoms explained to sufferers as being of a psychological origin has led many
to doubt their sanity, and question if the suffering experienced is ‘all in their head’ or that they are ‘just plain crazy’ (Dumit, 2006, p. 580).
The majority of those diagnosed with ME worldwide are female. Within the United Kingdom 80% (Meresearch.org.uk, 2015). There have been similar instances of contested conditions that mostly affect women without explanation such as Fibromyalgia, which also encounters difficulty with attaining the status of a legitimate illness (Åsbring and Närvänen, 2002). Similarly to ME the contention has been largely attributed to the fact that many people don’t believe in its existence. There is a conception that ME is hypochondriasis, or a consequence of the media reporting on the ‘disease of the month’ (Shorter, 2008, p. 305), causing individuals to fain sickness to attain the current ‘fashionable epidemic’ (Woodward et al., 1995, p. 326). In a gender specific sense there have also been attempts to explain the diagnostic disparity through suggestions that some women cannot handle the pressures of contemporary society; the burdensome social roles of women can result in women unintentionally finding sanctuary in the sick role through an ME diagnosis (Richman and Jason, 2001, p. 18).
Toner (1994) discusses functional somatic syndromes, which are mostly characterised as somatic symptoms with undetermined biological origin that mostly affect women including ME. The use of the word “functional” denotes a disorder to physiological capacity over anatomical structure, constrained with the assumption of being psychogenic and as a result insufficiently ‘real’. The disparaging moral implications of these syndromes result in sufferers disbelieving their own symptoms, or assuming that the reason for such suffering is due to being psychologically defective or mentally weak (Toner, 1994). A consequence of the psychological or hypochondrial framing of ME can be the disruption of sense of self, identity and morality (Åsbring an Närvänen, 2002). Preconceived notions of one’s own sanity can be called into question, and a patient’s perception of reality is challenged by the possibility of physical symptoms being ‘all in their head’ (Dumit, 2006, p. 580).
Discrediting experiences have detrimental impact of the wellbeing of sufferers, meaning that the possibility of a gender disparity is of great importance. It has been argued that female patients with ME are more likely to
have their suffering framed as psychological (Woodward et al., 1995), in addition to being dismissed, disbelieved, accused of malingering, or considered hypochondrial (Cooper, 1997). The reason that this is imperative to investigate is that those who have such delegitimising experiences are likely to suffer issues with identity, morality and shame as consequence (Åsbring and Närvänen, 2002).
3. Theoretical framework
3.1 Symbolic interactionist perspective and self
Symbolic Interactionism is particularly focused on the comprehension of the individual and their self-concept regarding their social experiences, how they define self in those experiences and personal behaviour (Bulmer, 1969; Mead, 1934). The self in this context is grown, adapted and sustained through interaction with others (Charmaz, 1983, p. 170) and identity is the location, definition and differentiation of the self from other people (Charmaz, 1995). Mead (1934) theorises that when you are born you do not possess ‘self’, it grows and forms within “the processes of social experience and activity, that is, it develops in the given individual as a result of his relations to that process as a whole and to other individuals within that process” (p. 135).
This concept of self has been discussed as four interdependent constituents; individual self-concept, the way in which we conduct ourselves, the perception of people’s perspective of us, and actual perspective and responses from people to us (Kinch, 1963). Social interaction is fundamental in relation to self-concept; it is not simply an expression on the part of the individual, it constitutes the individual (Bulmer, 1969).
Charmaz (1987) contends that those who are inflicted with illnesses frequently attempt to the best of their ability, to transform their desires into aims, purposes and behaviours, and consequently are driven to conceptualise future selves through recognition of the present state. Charmaz conceptualises these desires as “identity goals” characterised as “preferred identities that people assume, desire, hope, or plan for” (P. 3). Additionally, the self is seen as indivisible from the body, therefore, bodily sensations have influence over the mind (Gadow, 1980). This relationship is argued to become arduous for those suffering with chronic illnesses in that they experience prolonged bodily dysfunction (Charmaz, 1995), thus challenging their identity (Kestenbaum, 1982). ME sufferers, possessing an illness that is contested may have additional hardship with the relationship between mind and body; the origin of their bodily dysfunction can be called into question, challenging their perceived physical reality contributing to the challenging of identity (Travers and Lawler, 2008).
The symbolic interactionist concept of self, places social interaction at the center. This framework indicates that the interaction that ME sufferers have with others would be fundamental to the formulation of their sense of self. It has been suggested in previous research that the discrediting and arduous nature of the diagnostic process of ME, can contribute to patients experiencing a devalued sense of identity and self (Travers and Lawler, 2008). Therefore, I thought this framework of self would be the most effective means of analysing patient experience.
3.2 Loss of self
Charmaz (1983) follows a symbolic interactionist conceptualisation of self in her work on identity management among the chronically ill. Charmaz coined the term ‘Loss of self’, which she considers to be a central form of suffering for those with chronic illnesses; “chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally valued new ones” (p. 1). The depletion of self is largely attributed to the commencement of debilitating symptoms and when the illness consumes and disenables the sufferer from participating in their previous life. Those affected can experience monetary difficulties, strain on loved ones, loss of function, isolation and stigma. An amalgamation of such factors, often resulting in dependence on others and debilitation, causes the sufferer to experience abating dominion over their own life and all possible future lives. The resulting ‘diminished self’ accompanies the challenging of self-worth, perceiving their restrictions as continuous loss (Charmaz, 1983).
With reference to ME, Bülow (2008) discusses how the diagnostic process contributes to loss of self. The slow and arduous ‘pilgrimage’ of medical investigation before the application of a diagnostic label experienced by most ME sufferers prevents the conservation of identity while concurrently restricting a new sense of self to form (ibid, p. 128). However, even once the diagnosis of the condition is given ME still is an arduous terrain to navigate with regards to sense of self. Experiences of delegitimation, stigmatisation, and uncertainty, in addition to the symptomological debilitation of chronic illness, amalgamate to contribute
to a diminished sense of identity (Larun and Malterud, 2007), and loss of self (Travers and Lawler, 2008). The complications of ME as a contested condition, in comparison to other chronic illnesses I think make it an interesting tool of analysis. Patients may have discrediting experiences that further contribute to a devalued sense of self (Travers and Lawler, 2008). Additionally as I am assessing possible differences of experience between my participants, I thought it would be essential in evaluating how delegitimising encounters may contribute to further difficulty with identity.
3.3 The Sick Role, Stigma and Legitimacy
Talcott Parsons (1991), coined the concept of the ‘sick role’, meaning that illness can be perceived as a form of deviance but such deviance is legitimised through accessing the ‘sick role’. Parsons discussed how contemporary society can be strenuous to participate in and consequently result in illness. The sick role acts as a ‘claim for exemption’ from expected role obligation and permits the one suffering to rely upon others while trying to return to health. Parsons illuminates that the sick role may represent a preferable alternative to the stressors of role obligations, thus he described it as ‘contingent’, possessing prerequisites in order to exclude possible malingerers or those abusing the exemption from role obligations. The prerequisites for legitimate access to the sick role are firstly that the sufferers must have the desire and show the willing to return to health. Secondly the sufferer must pursue medical help to aid recovery and cooperate with clinicians in order to maximise recovery potential (Parsons, 1991).
The concept of stigma is also important in relation to legitimacy and legitimate suffering. Goffman (1963) discerns the stigmatised as those who have disparaging disparity between their ‘virtual social identity’, meaning the assumed, normative expectation of a person, and their ‘actual social identity’, how they actually are (ibid, p. 3). Scambler (2009) discusses how health related stigma is coupled with feelings of guilt, exclusion, rejection and fear of, or experiences of, negative social judgment, due to being afflicted with an undesirable medically unwarranted condition. Scambler conceptualises health related stigma as divided into two parts, as ‘enacted’ and ‘felt’; the prior refers to
the reality of the prejudice experienced from others to the stigmatised, and the latter is the affect and fear of enacted stigma. It is the internalised shame of knowing you live with an undesirable illness which he regards as the most troublesome element of stigmatisation over the actual experienced prejudice (Scambler, 2009).
ME patients are engaged in struggles for legitimacy due to suffering outside of the parameters of understandable etiology (Dumit, 2006). They are considered as one of the medically unwarranted conditions that can be stigmatised (Scambler, 2009). The stigma is exemplified through the contention surrounding the illness (Swoboda, 2008), and the most stigmatising aspects of patients’ experience have been argued to be discrediting of suffering psychologisation, trivialisation and accusations of malingering (Åsbring and Närvänen, 2002). I will be referring to these encounters as ‘delegitimation’ or ‘delegitimating experiences’ through the paper, as they pose a challenge to the legitimacy and veracity of ME patient suffering. In addition to delegitimating experiences, the contestation of the condition results in ME patients’ inability to gain access to a legitimate sick role. Thus, they suffer outside of a legitimate boundary and are not absolved of accountability for illness (Dumit, 2006).
3.4 Uncertainty
Chapter six explores the concept of uncertainty. Uncertainty is an inescapable presence in everyday life including medicine, as it represents the disparity between the known and not known (Gabe and Monaghan, 2013, p. 101). The introduction of medical uncertainty is largely attributed to the work of Talcott Parsons (1991) when discussing the control of medical knowledge. Parsons contends that clinicians would inevitably encounter uncertainty in medical practice, consequential of expeditious, endless scientific progress. As a result, the said clinician thus endures the balancing of clinical uncertainty and concurrently the emotional wellbeing of themselves and their patient (Parsons, 1991). Renee Fox (2000) built upon Parsons’ conception of medical uncertainty. Fox discusses how the presence of uncertainty increases the complexity of medical interactions, abridging the clinicians’ capacity to diagnose, treat and prevent
conditions effectively. Uncertainty limits the ability to give a prognosis and anticipate illness outcomes (Fox, 2000). Uncertainty within medicine is an area of high interest resulting from its injurious influence over practicing clinicians’ work role obligations, in addition to patient wellbeing (ibid).
Within the realm of diagnosis, another important distinction is that uncertainty can be split into two forms; clinical uncertainty and existential uncertainty. Clinical uncertainty refers to medical professionals becoming aware that the knowledge required to accurately diagnose and provide a prognosis is lacking (Adamson, 1997, p. 134). Clinical uncertainty hinders diagnosis. Diagnoses provide clarity and categorisation, wielding the power to legitimise and invalidate certain forms of suffering through classification (Jutel, 2011). This designation combats uncertainty, implementing a stabilising force (Bowker and Star, 1999, p. 285). Diagnosis effectively organises suffering; providing a prognosis, determining possible treatments and ultimately reducing uncertainty through clarification (Jutel, 2011). However, with reference to contested illnesses, this certainty of diagnosis becomes difficult. Complications arise due to clinicians’ attempts to minimize uncertainty through acquiring extensive, objective and scientifically grounded knowledge, but in turn neglect the patients’ emotional and personal needs (Fox, 2000; Malterud, 1999). Contested conditions such as ME do not have scientifically observable biomarkers, or determinable etiologies (Dumit, 2006). Therefore, the diagnoses of such illnesses are based upon the expression of the symptomological experience of the patient, which in the face of clinical uncertainty is frequently overlooked in favour of objective scientific knowledge that is not applicable (Malterud, 1999).
It is the concept of existential uncertainty that I am most interested in with regards to this research. Adamson (1997) discusses how existential uncertainty is particularly prevalent in patients who suffer with idiopathic conditions such as ME, meaning that symptoms stem from a vague or undetermined source. The sufferer comes to observe the jeopardous nature of their body, identity and possible futures causing feelings of anxiety that are to the detriment of individual’s wellbeing (Adamson, 1997, p. 136).
In this study I will be arguing that uncertainty can contribute to a devalued sense of identity and loss of self. Clinical and existential uncertainties
permeate the ME illness experience. ME holds other elements of uncertainty due to discrediting experiences of the sufferer; moral uncertainty (Åsbring and Närvänen, 2002), psychological uncertainty (Dumit, 2006), and uncertainty of perceived reality (Travers and Lawler, 2008).
3.5 Shame and Guilt
My final empirical chapter draws on the concepts of 'guilt' and 'shame'. I will discuss these concepts as a result of challenges to identity and self through delegitimisation. Lazare (1987) discussed shame on the part of the individual as the distressing experience of the depletion of pride, self-concept, self-respect, and the idea that as a person you are in some way bad, undeserving or defective (ibid, p. 1654). Conversely, guilt forms through precursory action, the committing of an act that transgresses a perceived boundary. As guilt and shame are two intertwined but still separate entities, they illicit different responses; as guilt is a negative emotion resulting from a transgression normally against another individual, the response is the seeking of restitution. Comparably, shame can act as a protection from contact with experiences that may subject an individual to further shame, through withdrawing and vanishing (ibid, p. 1655). Shame and guilt have been widely discussed in relation to ME. The stigmatisation of the condition, the inability to gain legitimate access to the sick role (Dumit, 2006), and delegitimising experiences (Åsbring and Närvänen, 2002) as shame inducing events (Lazare, 1987), have been argued to contribute to feeling guilt and shame. Additionally, shame and guilt have been argued to arise from others contending that there is disparity between a sufferers’ perceived reality and their actual reality (Ware, 1992). ME sufferers, through possessing a contested condition can encounter the questioning of their perceived reality through interrogations on their psychological wellbeing and moral character (Åsbring and Närvänen, 2002). Therefore, patients’ delegitimising experiences may not purely result in guilt and shame as a consequence of them being discredited, but also due to a way in which they can cause a patient to doubt their perceived reality.
Using a symbolic interactionist conceptualisation of self I will be analysing the differences in the diagnostic experiences of male and female ME patients. In chapter six, employing Scambler’s (2009) concept of stigma and the sick role (Parsons, 1991), I will be discussing delegitimising encounters and how such experiences can pose a threat to sufferers’ sense of self. The following chapter concerns how uncertainty in the ME patient experience can cause loss of self (Charmaz, 1983). The final empirical chapter examines what my findings suggest to be the main consequence of the amalgamation of the aforementioned experiences, guilt and shame.
The next chapter outlines the methodological approach I employed to analyse my research question.
4. Methodology
4.1 Sample
I used a purposive online sampling approach for this project. I chose online sampling due to its effectiveness in recruiting normally hard to reach populations (Fricker, 2008), such as the ME community, many of whom may be house bound due to the debilitation of the condition. A total of twenty participants were recruited for the study, fourteen women and six men. The choice of a small sample was with the aim of dedicating large amounts of time and attention to each participant, in order to attain rich, in-depth data on patient experience. Statistically, ME predominantly affects women (Meresearch.org.uk, 2015), thus, male participants were more difficult to recruit explaining the disparity in my sample, as within the population there are considerably less diagnosed men.
The informants were gathered through advertisements for research participation on UK online support groups for ME; on the website for ‘Action for ME’ in addition to various independent Facebook ME support groups. As I have been a member of these groups for a number of years prior to the beginning of my research, this sampling method seemed appropriate as it counts on the knowledge of the area of study on the part of the researcher in addition to the rapport with those within the community (Barratt, et al., 2015).
The advertisements included information regarding the nature of the study, the inclusion criteria and disclosure of my experience with the illness. I decided to put information about my diagnosis within the recruitment process as it has been reported that those with ME may be hesitant to talk about their condition to those who have not experienced the same illness, due to anxiety over either not being understood, or not being believed. I argue that disclosing my diagnosis encouraged participation from those who may not normally feel comfortable speaking to an outside researcher, and thus could ordinarily be erased from research.
The requirements for involvement included that the participant must live in the UK and that their clinical experience with the condition also took part in the UK. They also had to have a diagnosis of CFS or ME. One of my informants
disclosed that they had in fact not yet received a diagnosis of ME, however they have been referred to a specialist ME team and had been suffering with the symptoms of the condition for ten years thus far. Although having a diagnosis was a requirement for participation I decided to include her in the study. The research largely concerns the effects of diagnostic difficulty, it seemed that withdrawing a participant who was struggling to attain a diagnosis would be counterproductive as her illness experience is equally as important as that of diagnosed participants.
4.2 In-depth interviews
Within the three-month fieldwork period I conducted in-depth interviews online, with questions concerning sufferers’ pre-diagnostic, diagnostic and post-diagnostic experience. I decided to conduct the interviews on the online video or audio communication platforms of Skype and Facebook. Whether it was an audio or video interview depended on the preference of the participant. Some participants were hesitant about the use of a video call, the telephone option was introduced to ensure that my participants were comfortable with the interaction. My reasoning for online interviewing is that ME as a potentially debilitating condition could result in sufferers being confined to their homes. Those who are most severely affected by the condition would still be able to participate in the research, as the use of online methods allows flexibility for informants as there is no need for travel and they would be able to decide upon a day and time that they would be most able to participate (Bryman, 2016).
The purely online methods were employed to avoid the limitations of conducting face-to-face interviews and the limitations of recruiting participants when trying to research those with conditions that may be debilitating. Collecting my participants in treatment centers or physical support groups would limit my sample, as those who are the most severely affected, debilitated or housebound would not have been reachable. Additionally, as ME is a contested condition and many patients have had negative experiences in social interaction when disclosing their condition (Åsbring and Närvänen, 2002), the use of online interviews could mean that they may be more willing to share
possibly sensitive information as they are within the comfort of their home (Robson and McCartan, 2016).
In order to understand the experiences of sufferers of ME, their interaction with the diagnostic process and how said process has affected them before and after a diagnostic label had been acquired, I used in-depth interviews. The aim being to understand how the individual experienced the diagnostic process in addition to how said process influenced their perception of self and self-concept. I developed a semi-structured set of questions that were chronologically ordered from the onset of symptoms to the present day. I was flexible in questioning of my informants and followed the natural progression of conversation (Gibson and Brown, 2009). As the interviews concerned how the experiences of the participant affected them and their sense of self, allowing them to discuss what they considered important through freedom of conversation seemed the most effective means of collecting rich data.
The interviews on average took between an hour and an hour and a half. I transcribed all of the interviews verbatim and narratively analysed the content by hand, drawing out motifs and themes (Aronson, 1995). My analysis is centered on emotional and personal responses to illness and diagnostic experience over a period of time between symptom-onset to present day. I used narrative analysis to discern the influences of experience that may be temporally sensitive (Bryman, 2016). As I am looking at how the diagnostic experience has an effect on the patient, the use of narrative analysis allowed me to assess how that process could influence sufferers’ sense of self and wellbeing within the diagnostic time period and beyond. I identified early themes throughout the interview process and initial analysis of the transcripts to form my initial coding scheme and illuminate indications of the concepts of interest (Green and Thorogood, 2018). I used the initially identified themes to discern patterns of similarity or difference throughout the transcripts to develop a more specific and detailed set of thematic categories through a process of continually going over the data (Bryman, 2016). Through this method I was able to develop a comprehensive temporal picture of patient experience of the diagnostic process and how that then influences the patient. Narrative content analysis also
provided me the means to examine the possibility of a gender difference in said experience and its effects.
4.3 Limitations
The data that I collected is rich in detail and contains depth of information on patient experience. However, there are limitations in my sample and data collected. The scale of my sample does mean that I cannot claim that my findings are representative to the general diagnosed population of ME patients in the UK or in other countries. Arguments presented in my empirical chapters are informed by the data that I have collected in addition to previous research into patient experience and ME diagnostic experience. My argumentation should be considered as suggestions for further investigation on a larger scale in future research.
I decided to focus on the possibility of a gender difference in patient experience due to previous suggestions of a disparity in delegitimation (Åsbring and Närvänen, 2002; Clarke, 1999; Cooper, 1997; Richman and Jason, 2001; Woodward et al., 1995) in addition to the fact that ME affects four times as many women as men (Meresearch.org.uk, 2015). However, gender is not the only possible variable that could affect diagnostic experience of ME sufferers. I considered introducing additional variables such as geographical location and the age. However, in order to investigate my research question and the experience of my participants to the desired detail, a small sample size was chosen. My limited sample size proved problematic when trying to assess possible contributions of geographical location and age, as they are so highly variable. I did not observe any distinct or identifiable differences dependent on these variables and so I decided not to include them in my analysis.
4.4 Reflexivity and Positionality Reflexivity concerns self-awareness. It is a continuous critique and evaluation of one’s own position, bias towards and assumptions about the topic of study (Mills et al., 2010, p. 788). As I have previously disclosed I have the condition that is the topic of this research therefore, reflexivity is of particular importance. As a
sufferer of ME I acknowledge that my epistemological position means I am biased towards the treatment of those with the condition and the perception that ME is a somatic not a psychological illness. My site of study also requires a reflexive stance. The platforms that I will utilise to attain participants are online support groups specifically for ME. The platforms use these communities in order to spread awareness and increase legitimacy for the condition, and most of those involved hold the perception that ME is not of psychological cause.
I could be considered an ‘insider’ to the population of interest, which has inherent strengths and limitations with regards to research. Firstly, an advantage of my position is my pre-existing knowledge of the area, meaning that I did not have to acquaint myself with the context of research (Bell, 2014). Additionally my participants were aware of my positionality before the interviews were conducted, as they knew I had similar experiences they were arguably encouraged to be more forthcoming and honest in their responses without fear of being judged (Aguiler, 1981). This holds particular importance when researching an illness that is frequently met with scrutiny such as ME and due to the trust and rapport, I was able to collect rich data (Bourdieu, 1990).
Conversely, closeness to the population of interest can result in responses from participants that hold the assumption that you already know what they mean, thus not conveying as much detail in their responses as they would for a researcher who did not have the shared experience (Chavez, 2008). As means of avoiding this issue, when/if a participant would appear to assume that I inherently understood their response I would prompt them to explain fully what they were trying to communicate as if I had no previous knowledge of the condition (ibid).
4.5 Ethical considerations
To ensure informed consent informants were provided information on the requirements of participation, what would happen to their data, and on the focus of the study to ensure full comprehension of their involvement prior to the interview. Informants were verbally asked if they were willing to participate and
if they consented for the data collected in the interview to be used in my research project. They were also informed that they had the right to withdraw their data at any point during the research process, before the completion and submission of the thesis. Participants were made aware that all transcripts and audio files were stored in a password-protected folder, and that pseudonyms would be used to ensure anonymity.
The topic of interest is potentially distressing to participants, thus the concern of causing harm was central to my ethical considerations. Emotional upset due to recounting and reliving distressing situations or periods of time was a possibility, and in order to combat this I informed participants at the beginning of each interview that all questions were optional and they had the right to terminate the interview at any point (Bryman, 2016). However, all participants that I spoke to appeared completely willing to answer all questions, I did not encounter any instances of visible upset, refusing to answer, or asking to terminate the interview. I think this may have been consequential of how sufferers feel unrepresented, ignored and disbelieved in society and also as a researcher who also has experience with the condition, would not be judged or questioned on the veracity or reality of their illness. Informants frequently expressed how they were eager to contribute to anything that held the possibility of increasing the visibility of ME.
Findings
My analysis will center on gender difference of diagnostic experience and how that then can affect the sufferer throughout each of the empirical chapters. I begin in chapter 5 ‘Do You Believe ME?’ with addressing the delegitimising experiences of psychologisation, accusations of malingering and trivialisation. I will be discussing the delegitimation of ME sufferers and how that can lead to multiple forms of doubt as well as contributing to a devalued sense of identity. The following chapter ‘What’s Wrong With ME?’, concerns issues of uncertainty in the diagnostic process and continued illness experience. I will be discussing the implications of both clinical and existential uncertainty, their impact on patient wellbeing, and contribution to loss of self.
Both chapters 5 and 6 follow a chronological framework from the onset of symptoms, to present day. Chapter 7, ‘Is The Problem ME?’ departs form that structure. This chapter outlines what I found to be discussed most frequently by my informants, the consequential guilt and shame that comes with ME and the factors discussed in the two previous chapters.
5. Do you believe ME?
Psychologisation, malingering and the self
Rosenberg’s (2002) notion of the burden of biomedically ambiguous conditions in the realm of psychiatry is applicable to ME. The attempts by medicine to arrive at an “organised illness” when given biologically ambiguous symptoms (Balint, 1957) can result in the case of contested conditions in the placing of sufferers into psychological care. Psychologisation can be problematic for the wellbeing of said patient, in that psychiatric diagnoses to this day is bound with notions of personal accountability for suffering and the ability to alleviate manifestations of the affliction (Jutel, 2011). The interpretation of ME as a psychological illness, largely attributing suffering to depression, has been argued to be a result of the construction of equivocal, diagnostically challenging conditions as illegitimate, through what should be considered as a ‘demoralization’ of the patient’ (Richman and Jason, 2001). The demoralization and questioning of symptomological reality contributes to sufferers’ having belittling, stigmatizing, discrediting experiences with clinicians where they feel rejected (Hansen and Lian, 2016). The disparaging implications can result in those suffering accepting that their symptoms are because of a ‘moral defect’ and consequentially considered ‘not real’ (Toner, 1994). The threats to legitimacy experienced by[…] Lazy sod, it’s in your head Wish I could just stay in bed Shake it off, stop complaining To be like that, you must be feigning Just not possible, to have pain like that And legs that just won’t go To feel battered and bruised like you say you are You’re a lying so and so… Bill Clayton (2017) The York ME Community
patients have also been considered as a threats to identity, in that they unfavorably influence sufferers’ sense of self through its ‘violation’ (Travers and Lawler, 2008, p. 318).
The delegitimation of those with ME, leave them in a ‘communicative dilemma’; to expose their suffering to others bares the opportunity for questioning. Conversely, not being open and expressing hardship disallows any opportunity for it to be acknowledged and validated (Bülow, 2008). Coupled with the concept of felt and enacted stigma, in which those with not wholly legitimate illnesses experiences with stigmatization (enacted) causes anxiety about the possibility of that occurring again (felt) (Scambler, 2009), often resulting in non-disclosure through fear of being judged and deemed illegitimately suffering. It has been argued that the areas that felt most stigmatizing by ME sufferers are firstly the trivialization of suffering in addition to the psychologisation of the condition leading to the questioning of moral character (Åsbring and Närvänen, 2002).
The possibility of a gender disparity in relation to psychologisation has been talked about within literature about ME. In an Australian study conducted by Woodward et al. (1995) exploring the diagnostic process of ME, they identified that 85% of female patients had their symptoms explained as psychological, comparably only 30% of the male participants had that same experience (ibid p. 327). Additionally, a larger percentage of female patients were referred for psychological treatment prior to the acquisition of a diagnosis (Clarke, 1999, p. 130). In the United States, Richman and Jason (2001) conducted a study on the construction of illness, in relation to ME, suggests that some medical professionals who perceive the condition as psychosomatic etiologically, consider patients symptoms as “a flight into the sick role in order to escape from cultural expectation involving ungratifying and burdensome social roles” (ibid, p. 19). Paying special consideration to the dubious, expected functioning of women within their social roles, resulting in their retreating into the sick role (Richman and Jason, 2001). This is reflected in Cooper’s (1997) paper in which female participants in the UK discussed how they were characterised as malingerers, ‘bored housewives’, or for younger patients ‘school phobic’ (ibid, p. 190). The
literature presented above about a possible gender disparity in psychologizing ME patients is not all specific to the UK. However, there have been many papers that have indicated similar gendered aspects of delegitimation of ME patients across Australia, New Zealand, North America and Western Europe (Åsbring and Närvänen, 2002; Clarke, 1999; Cooper, 1997; Richman and Jason, 2001; Woodward et al., 1995). Consequentially as I am interested in this area and how the UK may be similar to these reports from other countries, thus I will be using them to inform my analysis.
What I want to suggest here is that a combination of psychologisation and accusations of malingering could contribute to the sufferer doubting the reality of their symptoms. In addition to this it contributes to a devalued sense of identity. Considering the arguments presented above I want to analyse the gendered aspect of the data collected in this study. Due to a small sample size, I cannot claim that any correlations within the data I collected are representative to the wider population. However I will be making a comparison between the male and female respondents with reference to their experiences with the aforementioned aspects as it appears important to recognise the possibility of a gender disparity. 5.1 Pre-diagnosis In the pre-diagnostic period the clinician and the sufferer are both at a point of uncertainty over the nature of a condition and its symptomology. Those suffering with ME have widely reported how the symptoms can be framed as physiological manifestations of psychological dysfunction (Åsbring and Närvänen, 2002; Cooper, 1997; Dumit, 2006; Woodward et al., 1995). The issue with this framing of ME is that psychological diagnoses hold implications of personal accountability for suffering and also attributed to shame (Åsbring and Närvänen, 2002; Travers and Lawler, 2008).
In my data there is a disparity between male and female patients in terms of having their symptoms attributed to psychological origin. Prior to the application of a diagnostic label, twelve out of the fourteen the female
participants were informed they had some form of psychological dysfunction, in comparison to one out of six of the males. This is reflected in the literature on the diagnostic experience of ME with female patients more likely to be referred to psychiatrists in the pre-diagnostic period (Clarke, 1999; Woodward et al., 1995). Although the sample size means that the results cannot be claimed as representative to the entire UK diagnosed population with ME, my findings could indicate that there is a disparity between the treatment of male and female patients.
Take the example of Katie; prior to her diagnosis her GP was informing her that her symptoms were due to depression:
“Well they were telling me I was depressed, but I thought that I can’t be depressed. I have always prided myself on being a super happy person, like I’m really positive and that’s who I am […] but you do just start to believe it you know”
Katie expressed how the insinuation of her having a psychological illness was in direct conflict with the characteristics in her life that she considers a valuable source of identity. As she continues with the story of her experience it becomes clear how the internalization of these accusations had an effect on her sense of self continuing even until after she had a diagnosis for ME, in that she no longer saw herself to hold that positivity: “It meant that I didn’t feel like who I was, I mean like who I am […] people don’t understand that it’s an illness, it made people think that that’s just how I was, when that’s not how I saw myself before, like it affected my identity for sure”
Harriet had a diagnostic period of eight years and discussed how her experience with psychologisation was accredited to her father being sick. Although she had been suffering with her symptom for four years prior to her
fathers’ illness, she had no luck in finding a diagnosis. Her general practitioner (GP) stated that her suffering was due to the stress of him falling ill: “Well they said I was depressed because my dad was unwell and it will go away when that goes away. But like I had been ill or years and that had only been going on for 6 months and really I just felt dismissed and it’s so demoralizing being told its all in your head but when you’re not well you can’t properly advocate for yourself so you just have to take it” Harriet went on to discuss how she started to doubt her symptoms and whether or not they were in fact a manifestation of a psychological cause. Harriet believed that the psychologised nature of her encounters with clinicians were very ‘demoralizing’ which is a prevalent theme both in the literature (Åsbring and Närvänen, 2002; Hansen and Lian, 2016; Richman and Jason, 2001; Toner, 1994) and the data collected in my study.
Avery, who had a seven-year diagnostic process, discussed how she experienced delegitimation early on with medical professionals and that it in fact had an adverse affect on her health:
“In the beginning I was diagnosed with generalized anxiety disorder so I sort of accepted that and I was doing the treatments but it didn’t do anything […] so I said to my counselor that I couldn’t do full days and I was really struggling but I really wanted to be at work but I just felt so sick and she literally said to me ‘it’s just your inner child being lazy and you need to not listen to her’, and she was like a doctor so I pushed myself really hard and so I got really sick and had to stop working” What all these accounts have in common, and in those of the other female participants who had their suffering attributed to a psychological or psychosomatic origin, is the internalization and acceptance of these accusations. This is when the onset of the initial doubt appears to occur, when medical professionals inform them that their physical symptoms are ‘all in their head’.
In addition to the majority of female participants, this experience was also shared by one of the men, Jonah, who had a diagnostic process of three years. Jonah explained how his initial visit to the GP resulted in an anxiety diagnosis, which he accepted as the cause for his suffering. However, even with anxiety related treatments the symptoms continued to persist and became more severe. As a result Jonah began to question the accuracy of the diagnosis and so revisited clinicians to be reassessed: “So I went to see this guy and he literally said to me ‘you need to accept the fact that you have major psychological problems’ which was the only time that I was made to feel that I was psychologically ill but delusional and not accepting it” Framing ME illness experience prior to diagnosis as psychological, as seen in Jonah’s experience, is reported to be one of the most stigmatizing aspects of the condition. Female patients reported how they felt as if their suffering was trivialized with the questioning of the severity of their suffering through its origin. Consequentially, they expressed how they felt their morality was then called into question and described as ‘deeply violating’, as their perception of self diverged from others perceptions (Åsbring and Närvänen, 2002). A combination of previous studies and the data collected here could indicate that the psychologisation of me, prior to an application of a diagnostic label could incite a warped self-perception in addition to the doubting reality of symptomological experience. When you are in a state of suffering physical symptoms and loss of ordinary functioning permeated with uncertainty, it can not only cause doubt in the body but coupled with consistent psychological questioning sufferers can experience the challenging of their sanity.
Accusations of malingering are also ever present in the diagnostic process of ME and are a contributor to the questioning of morality (Åsbring and Närvänen, 2002). Ten of the female participants claimed that they had been accused of faking or exaggerating symptoms by a clinician, comparable to one out of the male participants.
A common accusation of malingering reported by participants was that there was nothing identifiably wrong with them and so they were deemed to be wasting the time of medical professionals. The trivialization of ME illness experience prior to diagnostic application has been prevalent on the part of doctors for not wanting to medicalize what they may deem as mundane, everyday tiredness that is experienced by the general population (Ware, 1992, p. 350). Clinicians have expressed hesitation over diagnosing ME as they fear it may incite a self-fulfilling prophecy of those suffering, pandering to their symptoms and interpreting them as more severe than they are (Woodward et al., 1995). The symptoms experienced are dismissed as an exaggeration and consequentially constructing the abnormal experience as normal which has implications on patient wellbeing (Åsbring and Närvänen, 2002). For example, Avery stated: “I was made to feel I was wasting people’s time, I think going back and saying you feel shit and they would just say ‘oh we ran your bloods and there’s nothing wrong with you (laughing) I would just think yeah, but I still feel like crap mate” All of the participants who were accused of visiting the doctors frequently when there was nothing wrong with them also reported how this made them feel like a burden. Charlotte who had a diagnostic period of eight months, described her experience with the specialists responsible for her diagnostic investigation:
“The consultants made me feel disbelieved, one said straight up ‘oh your ME doesn’t exist’”
Charlotte also discussed how clinicians attempted to diagnose her with a different condition although she believed that she had ME:
“I was in a room with about 8 doctors and I said I thought I had ME, so he got me to breathe in and out really fast and then he said to me ‘oh you don’t have ME you have hyperventilation syndrome’. Well anybody who
breathes in and out fast is going to get dizzy and feel faint […] so I thought it was just pointless and never went back” Evan, who went through eighteen months of diagnostic assessment, discussed his experiences with GPs: “For like a year I was told things like I was run down or I just needed to do some exercise so I kept going back […] the GP just started to say that I had become hyper sensitized to my bodies inner workings and that I was focusing too much on it”
Many of the participants expressed how they were informed that they were exaggerating or being anxious about the symptoms they were experiencing:
“I felt misunderstood and very judged, I think we are just labeled as hypochondriacs and in my experience that I’m just making it up despite the fact that people know you have to go through this whole diagnosis thing” (Cassandra)
Suggestions that sufferers are paying too much attention to bodily functions and accusations of hypochondriasis is prevalent in the literature regarding the ME diagnostic experience. This is particularly prevalent among female patients (Åsbring and Närvänen, 2002). Patients have expressed in my research and previous literature, how this trivialisation can add a layer of culpability to their suffering. The doubting of the physical reality of symptomological experience and questioning of sufferers’ veracity can result in self-blame. Consequentially this challenges their sense of self as sufferers search for defects and moral failings, resulting in an “inferior version of their before-CFS-self” (Travers and Lawler, 2008, p. 319). Reports of trivialisation and accusations of malingering are present in the majority of reported experiences from female participants. Although I cannot assert that the disparity between the male and female patients being delegitimized pre-diagnosis is applicable to the wider ME population, there certainly is some indication of a possible gendered split present in my data and is
