Lived Experience
Some patients have grown accustomed to being treated so poorly that they struggle to recognize what is appropriate care. One respondent stated:
“I don’t know if this counts, but I was starved for 3 days because the nurses and consultants on the unit thought I didn’t want to get discharged.”
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FND Hope International Stigma Survey
Participants
Stigma has plagued societies, infiltrated cultures, and negatively impacted lives. Discriminating behaviors are socially unacceptable, yet, stigma continues to flourish in the most unexpected places and healthcare is no exception. In a recent, March 2020, FND Hope International survey, 503 individuals from around the world responded to the FND Hope Stigma Survey. While the majority of responses originated from the UK (282) and United States (115), respondents from Australia, Canada, New Zealand, the Netherlands, along with Switzerland, India, and others. Unsurprisingly, most were women (84.54%) between the ages of 35 and 54. Though ages spanned from those under 18 (2.39%) to over 65 (3.38%). Also, not surprising were the variety of diagnostic terms individuals had received.
Stigma & Terminology
Inconsistent terminology not only creates but perpetuates underlying tensions among patients and healthcare professionals alike. 18 varieties of functional labels were provided and an additional 30 were listed as “other”. The most surprising being a patient reporting the flagrant use of Hysteria. While changing terminology threatens our ability to consistently study the ailments of Functional Neurological Disorder, the influence and bias of each fleeting perception attached to each diagnostic label further strains our knowledge and understanding of the disorder, hindering our approach to the illness and those with the diagnosis.
A staggering 81.64% of patients felt they had been treated poorly due to stigma related to their FND diagnosis. This question also led to 85 free text comments, such as:
“I am constantly being asked if I understand my condition, many practitioners think once I understand it I will be ‘better’. I read and find out all I can but my physical issues remain.”
“I was told that going to the ER was wasting taxpayers money.”
“The neurologist was completely dismissive of everything I said, he laughed at me because I wrote something down incorrectly…”
While 14.31% of those who responded felt their FND diagnosis had in the past impacted their treatment in a positive way, 61.83% reported a negative impact, such as:
“I was left to spasm violently alone in an ER room for hours because this was typical fnd symptomology … instead of a medication reaction which it was.”
Traumatizing Stigma
61% of the men, women, and children who completed the FND Hope Stigma survey reported that they had felt traumatized as a result of their illness journey, and while 21% reported they had not experienced medical trauma, 18% were not sure.
Past illness experiences undoubtedly shape and mold our expectations for future care. Therefore, it is of little surprise that 64.27% reported concern and 22.95% were uncertain about their ability to access medical care in the future given the high rates of the reported stigma attached to the diagnostic FND label.
FND does not discriminate. It not only affects our wives, mothers, daughters but also our husbands, brothers, grandfathers, neighbors, coworkers, and children; all wanting and deserving better. FND patients should have access to quality treatment. They are individuals who want and deserve to be treated with dignity, care, and respect throughout their illness journey.
Where does Stigma originate?
The following graph demonstrates the extent to which patients experience stigma.
