Patients with medically unexplained or unmanageable symptoms challenge the health services and medical profession on a number of grounds. They challenge dominant explanatory and guiding frameworks within science and healthcare (see factors 1-5 in this blog series) and they also challenge the traditional patient-practitioner relationship dynamic.
Much of this dynamic is enshrined in the ‘sick role’, a concept developed in the 1950s by Talcott Parsons (widely acknowledged as the founder of medical sociology), which assigns the patient certain rights and responsibilities. Amongst these is that, whilst sick, the patient can be exempted from normal social and occupational duties as long as they recognise that sickness is only a temporary phase. In order to ensure this phase is temporary, the patient must comply with the doctor’s (expert) advice and treatment. The sick role works well within an acute care model, but there are clear issues when translating into chronic care contexts (see factor 2 on acute and chronic healthcare models in this blog series).
Chronic illness is, by definition, difficult to recover from and, especially with rare or contested illnesses which attract little space in medical curricula, patients are often as well-informed as their doctors. This can be a hard pill to swallow for many doctors who are trained to think that they know best. Social sciences literature details the resultant shift in power dynamics, with some GPs acknowledging that they are less patient-centred with polysymptomatic MUS patients in an attempt to wrestle back control of the consultation.
Medical uncertainty and challenges to the expert status of healthcare professionals may also contribute to the phenomenon of blaming the patient, again well documented in research. Patients with medically unexplained symptoms are variously framed by healthcare professionals as lacking in work ethic, lacking in stoicism, being motivated by attention seeking, and lacking in personal insight into their health issues. Such stigmatisation has been picked up by much of the media who have helped mould deeply prejudicial societal attitudes towards these patients.
Although mainstream society (including the medical profession) is being far kinder to patients with Long Covid than it has historically been towards certain other chronic illness patient groups, there is still a movement to psychologise and negatively stereotype long-haulers from certain quarters. Some people within the chronic illness community recently noted the suggestion that Long Covid patients might be motivated by ‘secondary gains’ in the comments section of a JAMA (Journal of the American Medical Association) article. This concept of secondary gain, the proposed (psychosocial or financial) benefit from being ill, is taken from biopsychosocial literature, the same literature that informs the NHS approach to medically unexplained symptoms.
As discussed in the blogpost on factor 1, the biopsychosocial model is important for Long Covid patients to understand, because it underlies the psychologisation of many difficult to treat chronic illnesses, and it is likely that this model will be applied to Long Covid if certain researchers get their way. The recent NICE guideline scope on Long Covid has given little away, but it should be noted that the Royal College of GPs who were heavily involved in drawing up the scope has historically been largely very much in favour of a biopsychosocial approach to ME/CFS and MUS.
Whatever the outcome, it should be noted some researchers are politically and financially invested in pushing the biopsychosocial agenda, and these proponents will not give up easily. The politics of the biopsychosocial model will be discussed in an upcoming blogpost.
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