Stigma in functional neurological disorder; a longitudinal study

BACKGROUND: Stigma in Functional Neurological Disorder has been consistently reported by patient organisations as one of their biggest challenges. We aimed to longitudinally evaluate different components of stigma, namely perceived, internalised (self) and anticipated stigma experienced by patients with FND, and to explore associated factors. METHODS: Participants were mainly recruited prospectively via outpatient clinics at two centres, shortly after communicating the diagnosis. Measures included: perceived, internalised and anticipated stigma, somatic symptom burden, quality of life, depression, anxiety, illness attribution, and experience of care. RESULTS: Ninety-six respondents completed the baseline survey, of which 80 completed the follow-up (mean duration 7 months). Perceived stigma (Stigma Scale for Chronic Illness-8, mean 21.2) scores were in the moderate range. Regarding internalised stigma, 32% agreed they had considered that FND was their fault. Anticipated stigma was experienced most from work, followed by healthcare, then friends and family. Participants held a balanced view of their condition as physical and psychological in contrast to their perception of others' understanding of FND as psychological - which in turn significantly related to higher stigma scores. Identifying as a man, being in a relationship, higher age and level of education were statistically significantly protective against stigma. At follow up, perceived, self, and anticipated stigma, somatic symptom burden, quality of life, anxiety and depression scores did not change significantly. CONCLUSION: People with FND experience high levels of perceived, self and anticipated stigma, and have high rates of physical and psychological comorbidity, which, in this cohort, did not improve over time. Counter-stigma approaches need to consider these different sources of stigma, outside just healthcare professionals.