Neurodegenerative diseases remain a subject that is too little discussed in society. Therefore, many would be ready to hide their illness from their 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 – Hôpitaux de Paris (a place of reflection on neurodegenerative diseases in particular) on the occasion of its Summer University which will be held from October 6 to 9, 2014.
There are approximately 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. Yet they are still little publicized compared to Alzheimer’s. This may explain first of all a lack of knowledge of the subject. If 7 out of 10 French people say they know what Parkinson’s disease and just over 5 out of 10 for the multiple sclerosis, this knowledge remains superficial. “Only 18% of French people say they know Parkinson’s disease ‘very well’ and 15% multiple sclerosis”, indicates the study.
We rarely talk about it in face-to-face conversations. But on the Web, it’s the same topo: research on these diseases has been declining since 2007 (in one month: 47,500 queries on multiple sclerosis and 23,500 queries around 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 the sick and the rest of the population.
The fear of being judged
Problem, this segmentation can easily arise fears about how to approach the disease when it occurs. More than 9 out of 10 respondents see at least one good reason not to reveal Parkinson’s disease or multiple sclerosis. First reason cited: the concern to protect one’s professional life (mentioned by nearly half of the respondents), especially among executives.
The discomfort of having to announce it to banks and insurance companies is mentioned 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 ridicule or the gaze of others would justify hiding one’s disease for 27% of respondents. A more significant fear among young people (35% of students fear teasing).
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