Neurodegenerative diseases remain a subject that is not widely discussed in society. Therefore, many would be ready to hide their illness from loved ones or at work if they were affected by Parkinson’s or multiple sclerosis.
This is what emerges from a study carried out for the Ethical Space of Public Assistance – Hospitals of Paris (a place of reflection on neurodegenerative diseases in particular) on the occasion of its Summer University to be held from October 6 to 9, 2014.
There are around 100,000 Parkinson’s patients in France and 80,000 people affected by multiple sclerosis (MS), which makes these two pathologies the two most common neurodegenerative diseases after Alzheimer’s. However, they are still little publicized in relation to Alzheimer’s. This may explain first of all a lack of knowledge of the subject. If 7 in 10 French people say they know what Parkinson’s disease and a little more than 5 out of 10 for the multiple sclerosis, this knowledge remains superficial. “Only 18% of French people say ‘very well’ to know Parkinson’s disease and 15% multiple sclerosis,” says the study.
We don’t talk about it much in face-to-face conversations. But on the Web, it’s the same story: research on these diseases has been declining since 2007 (in one month: 47,500 requests for multiple sclerosis and 23,500 requests for Parkinson’s disease). Only the patients and their entourage discuss the daily difficulties faced with the disease. There is therefore no communicating vessel between the community of patients-relatives of patients and the rest of the population.
Fear of being judged
Problem, from this segmentation can easily arise fears about how to approach the disease when it occurs. More than 9 in 10 respondents see at least one good reason for not disclosing Parkinson’s disease or multiple sclerosis. First reason cited: the concern to protect one’s professional life (mentioned by almost half of the respondents), especially among executives.
The discomfort of having to announce it to banks and insurance companies is cited in the background, and is cited by 37% of French people.
The taboo around these neurodegenerative diseases seems to be underpinned by a fear of being judged: the fear of being mocked or being looked at by others would justify the fact of hiding one’s disease for 27% of those surveyed. A more pervasive fear among young people (35% of students fear being teased).
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