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If You Have to Prove You Are Ill, You Can't Get Well

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... Se tiver que provar que está doente, não pode melhorar. (Hadler, 1996c) (Barsky & Borus, 1999) É possível que as síndromes somáticas funcionais não sejam novas. Talvez sejam "vinho velho em garrafas novas", com novos critérios diagnósticos (Wessely, 1990). ...
... Alguém que tenha que provar a sua doença, ficará "mais doente" ao ter que a provar. Neste sentido, a participação de um médico no processo de determinação de incapacidade pode constituir um ato iatrogénico (Hadler, 1996c). Isto não significa que não existam pessoas, infelizmente, com uma incapacidade irremediável para exercerem os seus papéis profissionais. ...
... A natureza intangível e ambígua da dor coloca questões de legitimidade e ameaça a credibilidade social e moral do doente (Sim & Madden, 2008). Tal como referiu Hadler, "If you have to prove you are ill, you can't get well" (Hadler, 1996c). A experiência subjetiva de algumas doenças pode resultar de uma metamorfose do problema do doente num outro problema, um problema mais legítimo, parecido com uma "doença verdadeira". ...
... 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. ...
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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.
... In 2017 I wrote a blog post titled 'Trying to get better while having to prove we're in pain'[26]. A clinician who'd read the post shared with me a paper by Dr. Nortin Hadler titled 'If You Have to Prove You Are Ill, You Can't Get Well'[27]. It was another instance of feeling seen and understood, yet also frustrated. ...
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Consultations between practitioners and patients are more than a hypothesis-chasing exploration, especially when uncertainty about etiology and prognosis are high. In this article we describe a single individual's account of their lived experience of pain and long journey of consultations. This personal account includes challenges as well as opportunities, and ultimately led to self-awareness, clarity, and living well with pain. We follow each section of this narrative with a short description of the emerging scientific evidence informing on specific aspects of the consultation. Using this novel structure, we portray a framework for understanding consultations for persistent musculoskeletal pain from a position of patient-centered research to inform practice.
... FM cannot be verified clinically by any laboratory or radiological measures (Jutel, 2011), and no known cure or lasting effective treatments are available (Macfarlane et al., 2017). Thus, it is debated whether diagnosing people with FM leads to medicalization of trivial health complaints (Hadler, 1996), and the diagnosis has low prestige within the field of medicine (Album & Westin, 2008). Nevertheless, patients with FM are frequent users of health services (Mengshoel et al., 2022), but as indicated by the title of the paper by Doebl et al. (2020), "no one wants to look after the fibro patient". ...
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Purpose: Fibromyalgia is a contested illness with unknown aetiology and poorly understood development. The present aim is to explore the pre-diagnostic illness trajectory narrated by individuals recently diagnosed with fibromyalgia (FM). Methods: Individual interviews about the course of the illness were conducted with seven women and three men (age 22 to 54 years) who had recently been diagnosed with FM. A narrative analysis of what the interviewees told and how the stories were narrated was conducted. Results: The findings are expressed by three storylines. ‘Strenuous life and alerted body preluding illness’ displays a difficult, unsupported life and bodily sensitivity to stimuli. ‘Recurrent pains unfolding to become a lasting and complex illness’ describes individuals pushing themselves to meet social obligations until they come to a full stop. ‘Diagnosed but still uncertain presence and future’ portrays satisfaction with finally being diagnosed with FM and being supported by others, but still there are no solutions as to do about it. Conclusions: The three storylines portray a long, winding trajectory of suffering starting before the onset of illness, and and unfolding illness gradually becoming persistent and overwhelming. Finally, a diagnosis of FM is arrived at, but how the situation will evolve is uncertain.
... ; https://doi.org/10.1101/2022.03.06.22271884 doi: medRxiv preprint to the workplace in order for a GP to provide certification and recommend treatment. The consequences of both having to 'justify' their need to be off work and relive the experience(s) that led to injury can be counterproductive to the psychosocial measures that promote recovery from an episode of LBP 9 , and may contribute to workers adopting a 'sick-role' that can contribute to delayed recovery 34 . ...
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Objective To determine the continuity of care (CoC) provided by general practitioners among workers with low back pain; identify personal, workplace and social factors associated with CoC in this population; and investigate if CoC is associated with working time loss. Data sources An administrative database containing accepted workers’ compensation claim and service level data, for workers with back pain from five Australian jurisdictions, injured between July 2010 and June 2015. Study Design A retrospective cohort study. Outcomes were CoC with a general practitioner, measured with the Usual Provider Continuity index, and working time loss, measured as the number of weeks for which workers’ compensation income support benefits were paid. Extraction methods Eligible workers had at least four general practitioner services, and greater than two weeks working time loss. Usual Provider Continuity index score was categorised as complete, high, moderate, or low CoC. Ordinal logistic regression models examined factors associated with Usual Provider Continuity category. Quantile regression models examined association between duration of working time loss and Usual Provider Continuity category, in four groups with different volumes of general practitioner services. Principal Findings Complete CoC was observed in 33.8% of workers, high CoC among 37.7%, moderate CoC in 22.1%, and low CoC in 6.4%. Higher Usual Provider Continuity was associated with fewer general practitioner services, older age, living in urban areas, an occupation as a Community and Personal Service Worker or Clerical and Administrative Worker, and the state of Victoria. In workers with more than two months of time loss, those with complete CoC consistently had shorter durations of time loss. Conclusions Higher CoC with a general practitioner is associated with less working time loss and this relationship is strongest in the sub-acute phase of low back pain. Callout Box What is known on this topic Continuity of care is a key component of best practice primary care Low back pain is a condition that often requires ongoing management and care from a general practitioner The relationship between continuity of care and work disability duration, recovery and return to work in workers with low back pain is not known What this study adds Workers with low back pain who see the same general practitioner for all services (i.e., have a greater continuity of care) generally have shorter durations of working time loss Higher continuity of care was observed in workers who had fewer PCP services, were aged over 45, lived in urban areas, and worked as a Community and Personal Service Worker or Clerical and Administrative Worker Workers’ compensation systems should consider policies and guidelines that increase continuity of care in injured workers
... This has deleterious consequences: as Nortin Hadler coined it, how can you get well if you have to prove you are ill? (25). ...
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This paper argues that “functional,” “medically unexplained,” or “somatoform” symptoms and disorders necessarily require a patient-centered approach from the clinicians. In the first part, I address the multiple causes of the patients' suffering and I analyze the unease of the doctors faced with these disorders. I emphasize the iatrogenic role of medical investigations and the frequent failure in attempting to reassure the patients. I stress the difficulties in finding the right terms and concepts, despite overabundant nosological categories, to give a full account of psychosomatic complexity. Finally, I discuss the moral dimension attached to assigning a symptom, at times arbitrarily, to a psychogenic origin. The following part presents a brief reminder of the patient-centered approach (PCA) in medicine. In the last part, I aim to explain why and how patient-centered medicine should be applied in the context of functional disorders. First, because PCA focuses on the patients' experience of illness rather than the disease from the medical point of view, which is, indeed, absent. Second, because PCA is the only way to avoid sterile attribution conflicts. Last, because PCA allows doctors and patients to collaboratively create plausible and non-stigmatizing explanations for the symptoms, which paves the way toward effective management.
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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
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Purpose: To compare the frequency of General Practitioner (GP) services and the time between first and last GP services (service duration) provided to workers with low back pain (LBP) between four Australian workers' compensation jurisdictions. Methods: Retrospective cohort study using service level data collated from the Australian states of Western Australia, South Australia, Victoria and Queensland. Negative binomial regression was used to compare GP service volume between jurisdictions in workers with accepted LBP compensation claims. Quantile regression was used to compare GP service duration. Models were adjusted for sociodemographic factors and occupation. Analyses were repeated in four cohorts with progressively more restrictive cohort definitions to account for the influence of jurisdictional policy variation in employer excess, service delivery and maximum time-loss benefit duration. Results: The study sample included 47,185 time-loss claims accepted between July 2010 and June 2015, that were linked with 452,391 GP services. Workers with LBP in Queensland recorded significantly fewer GP services funded and recorded significantly shorter average service duration than in other states. This pattern of jurisdictional variation was evident in all four cohorts, but was attenuated when cohorts excluded short- and long duration claims. In the final, most restricted cohort statistically significant adjusted incidence rate ratios of 1.47-1.60 were observed in Victoria, South Australia and Western Australia, while these states recorded additional service duration of 4.3-20.7 weeks at the median. Conclusion: There is significant variation in provision of GP services to injured workers with LBP between four Australian workers' compensation jurisdictions. Administrative requirements for time-based provision of work capacity certificates by medical practitioners may be contributing to service variation.
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Résumé Nous abordons dans ce travail la question des symptômes prolongés faisant suite à une infection par SARS=CoV-2, baptisés « Covid long ». Ce syndrome cliniquement peu spécifique doit être mis en perspective avec les syndromes post-infectieux connus de longe date mais finalement mal connus et peu étudiés, qualifiés, faute d’arguments probants pour une physiopathologie univoque et de meilleurs termes, de syndrome somatiques fonctionnels. Les implications cliniques (prise en charge « holistique » des malades), de recherche (nécessité d’investigations réellement « bio-psycho-sociales »), et sociales (construction sociale du syndrome à partir des expériences de patients relatées sur les réseaux sociaux, inégalités face à la maladie et ses conséquences socio-économiques) sont envisagées. Le « Covid long » doit être vu, en raison de sa prévalence attendue, comme une opportunité pour aborder la complexité des syndromes (fonctionnels) post-infectieux, leurs facteurs de risque, et les mécanismes biologiques, psychologiques et sociaux qui les sous-tendent.
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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).
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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.
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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.
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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.
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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.