What is it like to live with a functional movement disorder? An interpretative phenomenological analysis of illness experiences from symptom onset to post‐diagnosis

Abstract

Objectives. With few empirically supported treatments, functional movement disorders (FMD) can be challenging to manage. To enable service providers to better support people with FMD, this study sought to understand the lived experience of FMD: to gain insight into how individuals make sense of their experience from symptom onset through medical evaluation and diagnosis to post-diagnostic adaptation.Design. An interpretative phenomenological analysis (IPA) of patient accounts of living with FMD.Methods. Eight participants were recruited from a UK teaching hospital adult neurology service: seven females, varying in age (20s-70s), FMD symptom type (tremor, dystonia, and tics), and time to diagnosis (10-192 months). Semi-structured interviews facilitated participant accounts of key events. Interviews lasted 75-125 minutes and were transcribed verbatim.Results. Three super-ordinate themes were apparent. The first covered the experiences of onset ('Something is wrong with me'), including loss of control -with the affected body part often described as a separate entity -threats to identity and disturbance in relationships. 'At last! What now?' outlined the bittersweet experience of diagnosis and of treatments. Third, 'Living my life with it' incorporated ongoing experiences of coping with symptoms. While some continued to struggle with the emotional impact of symptoms, others developed a compassionate relationship with their self and maintained satisfying activities.This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

A practical review of functional neurological disorder (FND) for the general physician

“…Many patients with FND have negative experiences of healthcare arising from a combination of poor knowledge and also a tendency for healthcare professionals to implicitly, and sometimes explicitly, disbelieve, blame and humiliate patients with these disorders. 42,43 The patient with FND has been, and still is, often subject to an approach that there is 'nothing wrong', accusations that their symptoms are voluntarily produced, or that the symptoms are not within the domain of the physician, and just need to be solved by a psychiatric formulation and discovery of the 'root cause' (when such an outcome is actually infrequent).…”

Clinicians' implicit and explicit attitudes about the legitimacy of functional neurological disorders correlate with referral decisions

“…Such attitudes might represent themselves in clinical interactions. Indeed, many people living with FND report experiencing dismissive attitudes from clinicians (Dosanjh et al, 2021).…”

Psychotherapie bei funktionellen neurologischen Bewegungsstörungen

“…Für Patienten sind die Auswirkungen der Symptome auf das soziale und berufliche Leben, die Regulierung von Emotionen wie Angst, Scham und Verlegenheit sowie die Bedrohung der Identität wichtig für eine wirksame Behandlung neurologischer Erkrankungen [10][11][12]. Bezogen auf funktionelle Bewegungsstörungen im Spezifischen lassen sich in Interviews wiederkehrende Themen finden, die für die Patienten zentrale Rollen spielen (▶Tab.…”