Medicalization and the search for legitimacy in people diagnosed with non-epileptic attack disorder 2023 Peacock et al

Full title: ‘I just need to know what they are and if you can help me’: Medicalization and the search for legitimacy in people diagnosed with non-epileptic attack disorder

Highlights

• In-depth qualitative interviews with people with functional seizures and identify the social challenges of living with this diagnosis.
• Uses a sociological perspective to understand how these challenges are shaped by wider political issues.
• Patients identify the relevance of psychosocial context to their condition but struggle to find legitimacy through purely psychological explanations.
• We offer clinicians practical guidance on how to support patients with functional seizures in navigating the social implications of the diagnosis.

Abstract
This paper focuses on the struggles for legitimacy expressed by people with non-epileptic attack disorder (NEAD), one of the most common manifestations of functional neurological disorder presenting to emergency and secondary care services. Nonepileptic attacks are episodes of altered experience, awareness, and reduced self-control that superficially resemble epileptic seizures or other paroxysmal disorders but are not associated with physiological abnormalities sufficient to explain the semiological features. “Organic” or medicalized explanations are frequently sought by patients as the only legitimate explanation for symptoms, and consequently, a diagnosis of NEAD is often contested.

Drawing on narrative interviews with patients from a small exploratory study and using a sociological perspective, we propose that a psychological account of NEAD does not provide a sufficiently legitimate path into a socially sanctioned sick role. This is a reflection of the dominance of biomedicine and the associated processes of medicalization. These processes are, we argue, the sole route to achieving legitimacy. The stress-based or psychologically oriented explanations offered to patients in contemporary medical models of the etiology of NEAD engender an uncertain identity and social position and fail to provide many patients with an account of the nature or origin of their symptoms that they find satisfactory or convincing.
These struggles for legitimacy (shared by others with functional or somatoform conditions) are sharpened by key features of the contemporary healthcare landscape, such as the increasing framing of health through a lens of ‘responsibilization’.

Open access, https://www.epilepsybehavior.com/article/S1525-5050(23)00404-3/fulltext#

 

This is the wrong framing. This is the correct framing:

The patients are merely reporting what is happening to them and appropriately seeking help at the right place, which is then contested because medicine is still limited in what it knows, but is unable to operationalize those limitations rationally. It is perfectly rational and expected behavior from the patients, and entirely irrational and self-defeating on the part of healthcare systems.

At least they recognize that:

And it is not the patients' fault for being gatekept by a system making those requirements. The patients are powerless here because the system is built this way.

And I don't understand the point of pretending to listen to patients while ultimately injecting your own opinions:

This context is relentlessly pushed onto patients as an end in itself, in order to justify the lack of medical understanding. A coping mechanism of sort, but not the patients'.

This is all frankly a bizarre literary genre. Especially one that can see the problem, but fail to recognize it:

Healthcare is a restricted and gatekept system. It requires a ticket for admission, and that ticket is not in the possession of the patients, but rather held by the gatekeeping system and dispensed on their own terms, while supplies last, supplies which are chronically lacking.

The responsibility here is medicine's, and they still always frame it as the patients' failure, a self-fulfilling prophecy. This paper still falls short of recognizing that it is correct to call out the emperor's naked ass, for it is truly naked.

 

sick role