Tribune. We feel as invisible as our illness to the world. Epilepsy strikes at any age, upsetting our life plans, shattering our dreams. It deprives us of our freedom of movement, of access to certain jobs, keeps us away from sports and social activities, sorts out those around us. The crisis arises without warning, day or night, at any time. It hurts our bodies and undermines our morale. We think we got out of it, it strikes again, bringing us to the ground.
Once considered a devilish disease, then psychiatric, epilepsy remains today still so little known in the eyes of the general public, while one in ten people is likely to have a seizure during their life! People often have only one reductive image of it: that of an individual who convulses, drools and causes fear in those around him. It is not only on the occasion of the Dépakine scandal, the experimentation with cannabidiol or when there are road accidents that one should be concerned about epilepsy.
Every day, at any time, our disease can occur without announcing itself: absences, falls, hallucinations, incongruous behaviors … To this can be added bouts of fatigue, memory loss, difficulty in staying focused, which make us look like lazy people or simulators … All these life situations seem like nothing, but they constitute a permanent invisible handicap. How to live like the others, to go to school, to study, to have a professional life, to take transport, to go shopping, to have a family life, to join a sports club?
A daily struggle
Many of us hide our epilepsy for fear of losing our jobs, our credibility, the trust of others… Shame and guilt stick to our skin. We fear the look of others, exclusion, stigmatization. It’s a daily struggle!
Because we do not talk enough about epilepsy, because this disease is complex and unknown, over the years we have fallen through the cracks of public health priorities and successive national plans.
“We deserve human and material resources according to the degree of seriousness of our state of health”
We demand the attention of the public authorities and concrete measures for epilepsy. We deserve human and material resources according to the degree of seriousness of our state of health: an organized care sector, with more epileptologists, health professionals trained and dedicated to epilepsy, access to diagnostic examinations and essential follow-up within reasonable timeframes, medico-social establishments that welcome us, informed teachers who can have educational resources to better support our children, access to transport like all other disabled people, adapted jobs that take into account of our disease, equivalent recognition in the territory of the handicap caused by our disease and appropriate compensation.
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