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If You Have to Prove You Are Ill, You Can't Get Well
... Their life expectations come into conflict with the consequences of their debilitating condition. Therefore, some of them try to conceal their illness or to cope with its consequences, since they are unwilling to accept the label of for ever being a patient with a chronic condition (Hadler, 1996). The participant with MS diagnosis states bluntly: 'The moment you tell them, you will become Multiple Sclerosis' (P5). ...
... The onset of the disease shows how personality features become somatised, i.e. dependent on physical manifestations of the body. The participants become their disease (Dings & Glas, 2020;Hadler, 1996.) According to the accounts, the participant's spiritual needs are felt to be disconnected from the malfunctioning body. ...
This article addresses cases of remarkable recoveries related to healing after prayer. We sought to investigate how people who experienced remarkable recoveries re-construct and give meaning to these experiences, and examine the role that epistemic frameworks available to them, play in this process. Basing ourselves on horizontal epistemology and using grounded theory, we conducted this qualitative empirical research in the Netherlands in 2016–2021. It draws on 14 in-depth interviews. These 14 cases were selected from a group of 27 cases, which were evaluated by a medical assessment team at the Amsterdam University Medical Centre. Each of the participants had experienced a remarkable recovery during or after prayer. The analysis of the interviews, which is based on the grounded theory approach, resulted in three overarching themes, placing possible explanations of the recoveries within (1) the medical discourse, (2) biographical discourse, and (3) a discourse of spiritual and religious transformation. Juxtaposition of these explanatory frameworks provides a way to understand better the transformative experience that underlies remarkable recoveries. Uncertainty regarding an explanation is a component of knowing and can facilitate a dialogue between various domains of knowledge.
... Overall, participants found both litigation and the process of applying for disaster assistance compensation to be stressful; the processes caused disappointment and anger and placed substantial demands on emotional resources. Some even described litigation as being equal to or more stressful than the disaster itself, supporting Hadler's [146] description of the tyranny of torts, stating the demands placed on litigants to prove the magnitude of their symptoms are likely to reduce litigants' ability to cope. Non-disaster-related literature has also reported mixed findings on the impact of the compensation process on mental ill-health [21,147]. ...
After disasters, many people seek compensation for physical, psychological or economic damages. However, compensation processes can be perceived as arduous and unfair and potentially create stress for both individuals and communities. This systematic review explored the psychosocial impacts of post-disaster compensation processes, including compensation sought through both litigation and government assistance programmes. We searched seven databases, hand-searched reference lists of included studies, and used thematic analysis to synthesise results of included studies. We screened 6,532 papers, ultimately including 66 in the review. While we found mixed evidence regarding the relationship between individual mental health and the compensation process, many studies suggested the process placed demands on emotional resources and could cause stress. Numerous challenges of the compensation process were described, including complicated paperwork, lengthy processes, inadequate information, confusing eligibility criteria, lack of inter-agency cooperation, poor understanding of communities’ unique needs, insufficient pay-outs, and politicisation of the process. Inequities in compensation distribution introduced additional stress to already traumatised communities, who often experienced resentment, envy and conflict. The mixed nature of the relationship between mental health and the compensation process was evident in research trends where a small number of studies reported positive findings related to relating to gratitude, helpfulness of compensation and strengthened community relationships, while a substantial number of others reported negative impacts including higher mental health problems. Positive and negative impacts were reported for both litigation and non-litigation compensation-seeking. The nuanced dynamics of these findings are described in greater detail within the paper. It is important that compensation regulators consider the potential impacts on individuals and communities and take steps to address compensation inequities. This enhanced understanding of how those affected by disasters can rebuild their lives and furthering understanding of how to support them will enable evidence-based approaches to building resilience and planning for long-term recovery. Significant compensation process improvements could be realised by ensuring clear communication and transparent decision-making. Overall, this review underscores the importance of ensuring that compensation processes are fair and straightforward so they can repair material losses without deteriorating the social norms and relationships of affected communities.
... And, when they fail to make significant improvements in response to therapeutic interventions, a new round of accusations from providers and individuals in their inner circle arises: their symptoms are not real, or they are not trying hard enough to get better in order to reap secondary gains (Wolfe and Rasker 2021). The spirit of this medical grip is captured in the title of the well-known medical publication, "If You Have to Prove You Are Ill, You Can't Get Well" (Hadler 1996). FMS is seen as an illness, not a disease, and patients suffer without remedy. ...
The term “Medically Unexplained Symptoms” (MUS) describes chronic symptoms for which medical investigations fail to reveal a specific pathology or biomarker. Even as MUS are among the most prevalent chronic health problems in the global north, patients who experience them reside in a nebulous space. Such nebulousness is heightened for women patients. Moreover, women report MUS at higher rates than men. In this review essay, we analyze the medicalization and feminization processes vis-à-vis MUS by focusing on two particular syndromes: Fibromyalgia (FMS) and Long COVID (LC). FMS and LC present clear parallels that allow us to trace an unhappy marriage of women and MUS. We demonstrate how the medical constructions of these two syndromes as knowledge categories are representations of medical uncertainty vis-a-vis women patients. We then scrutinize the resulting gendered consequences of these categories for the illness experience. We conclude our review by calling for a cultural reorientation in our thinking about MUS that centers a recognition that the origins and manifestations of a great deal of human suffering reside outside of medicine’s ways of knowing. In so doing, we connect to foundational claims in medical anthropology and sociology; namely, that illness is more than disease, and health cannot be achieved primarily via biomedical means.
... Furthermore, with each new physiotherapist the worker must explain their condition, their current or past treatment, and their recovery. This requirement to re-explain the details surrounding the LBP to different providers may result in the worker having to "prove" they are in pain, hampering recovery [25]. Finally, there is always a chance that the worker and physiotherapist will not build rapport, and thus the worker may be less inclined to follow their advice or receive nonevidence-based treatment and advice, potentially stalling recovery and return to work. ...
Purpose
The aims of this study are to determine how continuous the care provided by physiotherapists to compensated workers with low back pain is, what factors are associated with physiotherapy continuity of care (CoC; treatment by the same provider), and what the association between physiotherapy CoC and duration of working time loss is.
Methods
Workers’ compensation claims and payments data from Victoria and South Australia were analysed. Continuity of care was measured with the usual provider continuity metric. Binary logistic regression examined factors associated with CoC. Cox regression models examined the association between working time loss and CoC.
Results
Thirty-six percent of workers experienced complete CoC, 25.8% high CoC, 26.1% moderate CoC, and 11.7% low CoC. Odds of complete CoC decreased with increased service volume. With decreasing CoC, there was significantly longer duration of compensated time loss.
Conclusion
Higher CoC with a physiotherapist is associated with shorter compensated working time loss duration for Australian workers with low back pain.
... This has been described as an epistemic incongruence (the patient knows the illness in their body, but there is no corresponding illness in the clinician's diagnostic lexicon) (Johansen & Risor, 2016a). In turn this lack of common language leads both to epistemic injustice (Kidd & Carel, 2017) and to the dynamic summed up by Hadler as 'if you have to prove you are ill, you can't get well' (Hadler, 1996). An illness narrative which lacks the structure and anchor points of specific findings or diagnoses is commonlyusing Frank's typology (1995) -'chaotic' (Nettleton et al., 2005;Frank, 1995). ...
Introduction
Biographical disruption describes the process by which illness impacts not just on a person’s body and their participation in activities, but also on their sense of self. Biographical disruption is often followed by a process of biographical repair in which identity is reconstructed and a new normality is restored. People with persistent physical symptoms (sometimes referred to as medically unexplained symptoms) experience biographical disruption. This can be complicated by lack of explanation and the implication that if the problem is not medical, then it might be the person/psychological. We aimed to examine this tension in people attending a novel “Symptoms Clinic” for people with persistent physical symptoms.
Methods
This study reports an embedded qualitative study in a UK based randomised controlled trial. Data were collected by audio recordings of consultations and semi-structured interviews with patients. We used theoretically informed thematic analysis with regular coding and discussion meetings of the analysis team. This analysis explores the role of intervention components in facilitating biographical repair.
Results
The lack of acceptable explanation for persistent symptoms acted as a block to biographical repair. In the clinic, multi-layered explanations were offered and negotiated that viewed persistent symptoms as understandable entities rather than as indicators of something still hidden. These explanations allowed study participants to make sense of their symptoms and in turn opened new opportunities for self-management. The result was that participants were able to reframe their symptoms in a way that enabled them to see themselves differently. Even if symptoms had not yet improved, there was a sense of being better. This can be understood as a process of biographical repair.
Conclusion
Explaining persistent physical symptoms enables biographical repair.
... [34][35][36] Patients' "nomadism" and stigmatization, as well as ambiguities and difficulties in physician-patient interaction, have also been extensively investigated. 18,19,[37][38][39][40][41][42][43] In this relationship, different roles of patients with FM have been described. They may sometimes use strategies to gain control of their situation during the treatment process and to influence healthcare professionals, using their status as "experienced" patients familiar with the system and their disease to gain advantages. ...
Background:
Fibromyalgia (FM) is a chronic disease characterized by widespread pain. Although much is known about this disease, research has focused on diagnosis and treatment, leaving aside factors related to patient's experience and the relationship with healthcare system.
Objectives:
The aim was to analyze the available evidence on the experience of FM patients from the first symptoms to diagnosis, treatment, and follow-up.
Methods:
A scoping review was carried out. Medline and the Cochrane Library were searched for original studies or reviews dealing with FM and focusing on "patient journey". Results were organized using a deductive classification of themes.
Results:
Fifty-four articles were included in the qualitative synthesis. Five themes were identified: the patient journey, the challenge for the health systems, a complex doctor-patient relationship, the importance of the diagnosis, and the difficulty of standardizing the treatment.
Conclusions:
This scoping review confirms the negative impact of FM on the patient, their social environment, and health systems. It is necessary to minimize the difficulties encountered throughout the diagnosis and follow-up of patients with FM.
... Varios estudios se han centrado en la duda y la angustia de los pacientes que no perciben una asistencia médica adecuada, así como en su búsqueda de legitimidad y en su resistencia a las explicaciones psicológicas del dolor y el sufrimiento [28][29][30][31] . También se ha investigado ampliamente el nomadismo y la estigmatización de los pacientes, así como las ambigüedades y dificultades de la interacción médico/ paciente [32][33][34][35][36][37][38][39][40] Los participantes reconocieron que el tratamiento más efectivo para la FM es multimodal, pero tanto los obstáculos del sistema como la reticencia de los pacientes complican la adherencia. La adherencia al tratamiento no es buena y cuando se nota mejoría, se abandona el tratamiento. ...
... Varios estudios se han centrado en la duda y la angustia de los pacientes que no perciben una asistencia médica adecuada, así como en su búsqueda de legitimidad y en su resistencia a las explicaciones psicológicas del dolor y el sufrimiento [28][29][30][31] . También se ha investigado ampliamente el nomadismo y la estigmatización de los pacientes, así como las ambigüedades y dificultades de la interacción médico/ paciente [32][33][34][35][36][37][38][39][40] Los participantes reconocieron que el tratamiento más efectivo para la FM es multimodal, pero tanto los obstáculos del sistema como la reticencia de los pacientes complican la adherencia. La adherencia al tratamiento no es buena y cuando se nota mejoría, se abandona el tratamiento. ...
The expression ‘medically unexplained symptoms’ is still widely used to indicate physical symptoms that are not attributable to any known conventionally defined disease. It is discursively related to several other concepts including somatisation , somatic symptom disorder (DSM 5), and functional somatic syndromes , which include the diagnoses of fibromyalgia, chronic fatigue syndrome, multiple chemical sensitivity, and irritable bowel syndrome, among others. Some of these conditions are currently the object of controversies and political battles. This chapter examines what it can mean to approach this group of conditions ‘pragmatically’ by contrasting two different versions of pragmatism. One version, exemplified in social research that aligns itself with arguments proposed by some patient movements, is consistent with Rorty’s ‘epistemological behaviourism’. Another version, exemplified by a novel clinical intervention (the Symptoms Clinic) is consistent with William James’ ‘radical empiricism’. It is argued that these different approaches yield significantly different consequences. The first affords legitimacy to patients on an immediate and piecemeal basis at the expense of reinforcing a bifurcated mode of thought. This, it is argued, is a factor in (re)producing the experience of ‘medically unexplained symptoms’. The second is premised on the assumption of a relational continuity between social structure, embodied experience, and physiology.
Background
Long COVID patients have experienced a decline in their quality of life due to, in part but not wholly, its negative emotional impact. Some of the most prevalent mental health symptoms presented by long COVID patients are anxiety, depression, and sleep disorders. As such, the need has arisen to analyze the personal experiences of these patients to understand how they are managing their daily lives while dealing with the condition. The objective of this study is to increase understanding about the emotional well-being of people diagnosed with long COVID.
Methods
A qualitative design was created and carried out using 35 patients, with 17 participants being interviewed individually and 18 of them taking part in two focus groups. The participating patients were recruited in November and December 2021 from Primary Health Care (PHC) centers in the city of Zaragoza (Northern Spain) and from the Association of Long COVID Patients in Aragon. The study topics were emotional well-being, social support networks, and experience of discrimination. All an inductive thematic content analyses were performed iteratively using NVivo software.
Results
The Long COVID patients identified low levels of self-perceived well-being due to their persistent symptoms, as well as limitations in their daily lives that had been persistent for many months. Suicidal thoughts were also mentioned by several patients. They referred to anguish and anxiety about the future as well as a fear of reinfection or relapse and returning to work. Many of the participants reported that they have sought the help of a mental health professional. Most participants identified discriminatory situations in health care.
Conclusions
It is necessary to continue researching the impact that Long COVID has had on mental health, as well as to provide Primary Health Care professionals with evidence that can guide the emotional treatment of these patients
Despite the importance of daily symptoms for people's quality of living, they are seldom studied (thus, the "iceberg of morbidity"). We begin by reviewing United States and British studies that have information on daily symptoms experienced by adults. The most common ones are respiratory (largely from colds) and musculoskeletal (largely from arthritis, injury, overexertion). Using health diaries kept for 6 weeks by a population-based sample of adults, we report the frequency of respiratory and musculoskeletal symptoms, their specific types and causes, and what factors urge people to take therapeutic actions for them. The most popular action for both is prescription or nonprescription drugs, followed by lay consultation, then restricted activity, and lastly seeking medical care. On Respiratory Days, how miserable a person feels is the main stimulus to action; other morbidity aspects of the day also rank high. Sociodemographic groups scarcely differ in their responses to respiratory symptoms. The situation is similar for Musculoskeletal Nondisease Days (injury/overexertion). But for Musculoskeletal Disease Days (arthritis), sociodemographic characteristics figure more strongly in care, and the day's degree of morbidity less. These results signal basic differences in how people approach chronic and acute health problems: For chronic ones, they devise strategies of care (determined partly by their roles, attitudes, and resources) over months and years, and apply them during flare-ups. For acute problems, decisions about care are made in the short run and hinge mostly on symptoms. Our analysis also considers how actions complement or substitute for each other: Self-care actions (nonprescription drug use and restricted activity) tend to co-occur, and so do actions based on medical care (prescription drug use and medical contact). The two domains substitute in one way (nonprescription drug use greatly reduces chances of prescription drug use) and join in another (restricted activity increases chances of medical contact).
Objectives:
To summarize the existing data on abuse history and gastrointestinal illness, suggest a conceptual scheme to explain these associations, suggest ways to identify patients at risk, and provide information about mental health referral.
Data sources:
Review of the pertinent literature by clinicians and investigators at referral centers who are involved in the care of patients with complex gastrointestinal illness and who have experience in the diagnosis and care of patients with abuse history in these settings.
Study selection:
All research articles and observational data that addressed abuse history in gastroenterologic settings. Articles were identified through a MEDLINE search.
Data extraction:
Independent extraction by multiple observers.
Data synthesis:
On the basis of literature review and consensus, it was determined that abuse history is associated with gastrointestinal illness and psychological disturbance; appears more often among women, patients with functional gastrointestinal disorders, and patients seen in referral settings; is not usually known by the physician; and is associated with poorer adjustment to illness and adverse health outcome. Although the mechanisms for this association are unknown, psychological factors (somatization, response bias, reinforcement of abnormal illness behavior) and physiologic factors (psychophysiologic response, enhanced visceral sensitivity) probably contribute. On the basis of these data, recommendations are made on how to identify patients at risk, how to obtain this information, and, if needed, how to make appropriate referrals.
Conclusions:
The authors agree with existing data on the association between abuse history and gastrointestinal illness. Physicians should ask patients with severe or refractory illness about abuse history. Appropriate referral to a mental health professional may improve the clinical outcome.
PURPOSE: Patients with fibromyalgia have been reported to display high rates of several concomitant medical and psychiatric disorders, including migraine, irritable bowel syndrome, chronic fatigue syndrome, major depression, and panic disorder. To test further these and other possible associations, we assessed the personal and family histories of a broad range of medical and psychiatric disorders in patients with fibromyalgia. PATIENTS AND METHODS: Subjects were 33 women (mean age 42.1 years) who each met American College of Rheumatology criteria for fibromyalgia and presented to a rheumatologist at a tertiary referral center. They received the Structured Clinical Interview for DSM-III-R (SCID); a supplemental interview, in SCID format, for other medical and psychiatric disorders, including migraine, irritable bowel syndrome, and chronic fatigue syndrome; and an interview for family history of medical and psychiatric disorders. RESULTS: Patients with fibromyalgia displayed high lifetime rates of migraine, irritable bowel syndrome, chronic fatigue syndrome, major depression, and panic disorder. They also exhibited high rates of familial major mood disorder. CONCLUSIONS: The finding that migraine, irritable bowel syndrome, chronic fatigue syndrome, major depression, and panic disorder are frequently comorbid with fibromyalgia is consistent with the hypothesis that these various disorders may share a common physiologic abnormality.
To develop criteria for the classification of fibromyalgia, we studied 558 consecutive patients: 293 patients with fibromyalgia and 265 control patients. Interviews and examinations were performed by trained, blinded assessors. Control patients for the group with primary fibromyalgia were matched for age and sex, and limited to patients with disorders that could be confused with primary fibromyalgia. Control patients for the group with secondary-concomitant fibromyalgia were matched for age, sex, and concomitant rheumatic disorders. Widespread pain (axial plus upper and lower segment plus left- and right-sided pain) was found in 97.6% of all patients with fibromyalgia and in 69.1% of all control patients. The combination of widespread pain and mild or greater tenderness in ⩾ 11 of 18 tender point sites yielded a sensitivity of 88.4% and a specificity of 81.1%. Primary fibromyalgia patients and secondary-concomitant fibromyalgia patients did not differ statistically in any major study variable, and the criteria performed equally well in patients with and those without concomitant rheumatic conditions. The newly proposed criteria for the classification of fibromyalgia are 1) widespread pain in combination with 2) tenderness at 11 or more of the 18 specific tender point sites. No exclusions are made for the presence of concomitant radiographic or laboratory abnormalities. At the diagnostic or classification level, the distinction between primary fibromyalgia and secondary-concomitant fibromyalgia (as defined in the text) is abandoned.
Patients with fibromyalgia have been reported to display high rates of several concomitant medical and psychiatric disorders, including migraine, irritable bowel syndrome, chronic fatigue syndrome, major depression, and panic disorder. To test further these and other possible associations, we assessed the personal and family histories of a broad range of medical and psychiatric disorders in patients with fibromyalgia.
Subjects were 33 women (mean age 42.1 years) who each met American College of Rheumatology criteria for fibromyalgia and presented to a rheumatologist at a tertiary referral center. They received the Structured Clinical Interview for DSM-III-R (SCID); a supplemental interview, in SCID format, for other medical and psychiatric disorders, including migraine, irritable bowel syndrome, and chronic fatigue syndrome; and an interview for family history of medical and psychiatric disorders.
Patients with fibromyalgia displayed high lifetime rates of migraine, irritable bowel syndrome, chronic fatigue syndrome, major depression, and panic disorder. They also exhibited high rates of familial major mood disorder.
The finding that migraine, irritable bowel syndrome, chronic fatigue syndrome, major depression, and panic disorder are frequently comorbid with fibromyalgia is consistent with the hypothesis that these various disorders may share a common physiologic abnormality.