More than nine in 10 people with a neurological disorder face stigma because of their condition, mostly from medical professionals, according to a study.
The survey, by the organisation that represents European organisations across neurological diseases, suggests that most of this stigma comes from medical professionals who don’t appear to believe patients’ symptoms.
The 1,300+ respondents to the European Federation of Neurological Association’s (EFNA) poll had a range of disorders including ME, migraine or headaches, epilepsy, Parkinson’s and chronic pain.
Around 75 per cent of people reported feeling as though they didn’t receive adequate treatment because a medical professional didn’t take them seriously, while just over a third avoided seeking medical advice because they felt embarrassed.
The paper states: “Given the importance of early intervention in many of these conditions we can see that stigma poses a risk to people’s health outcome.”
At work, almost one in five say their manager didn’t respond in a positive or helpful way when they disclosed their disorder, while a third say relationships with colleagues were negatively affected after disclosing their disorder.
Respondents also reported that their social and family life is affected by people who misunderstand their conditions.
Almost a third said their family don’t understand the consequences of their condition, while half said their families sometimes make them feel like they’re exaggerating their condition and a third of respondents with children have been made to feel like inadequate parents.
Two thirds of respondents missed out on a social event in the two weeks prior to the survey because of their condition, while a third felt excluded because of their condition.
Almost half of those who had a neurological disorder in childhood found it difficult to make or maintain friendships at school, and the same number were left out of school events because of their condition.
People with invisible symptoms reported experiencing the most stigma overall, while a third say they are made to feel like their disorder is their fault.
“From these results,’ the study states, ‘We can see that the need for increased understanding is clear.”
The EFNA plans to carry out further research and put together a statement of how it plans to address the challenge of stigma.
