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On the occasion of the World Day of Solidarity for Migraine and the Week for the Quality of Life at Work, the association La Voix des Migraineux has published an unprecedented survey on migraine at work. Data that highlights the societal ignorance of the subject.
Can we reconcile professional life and chronic migraine? This is the question posed by La Voix des Migraineux, an association created in 2018 which works to raise awareness and take into account people with chronic migraines.
To answer this, the association, led by Sabine Debremaeker, conducted a study with 741 migraine sufferers, from February 25 to March 10, 2022. And the result shows the impact of chronic migraine on the professional life of patients, since 15% of migraine sufferers surveyed did not no work because of their illness.
Among the 85% who have a job, the lack of recognition of their disease by the world of work, and more generally by society, is undeniable. Only 1% of patients are recognized invalid. 10% of them did the request for an RQTH (Recognition of Disabled Worker Status).
Insufficient means
The quality of life of migraine sufferers at work is very impaired: 42% say they have more seizures during periods worked versus non-worked.
And in the event of an attack, migraine sufferers need a calm environment, without lights and screens, characteristics that are rather rare in the workplace. According to the press release, 90% of respondents have no place to rest in their business. Alone 4% benefit fromspecific arrangements.
Guillaume Leleu, a 29-year-old migraine patient, took part in the survey of The Voice of Migraineurs. He has been off work for a year and a half and notices the lack of autonomy he suffers from because of his illness: “Migraine has always been an obstacle in my school, university and then in the world of work, which is not at all designed for migraine sufferers. Nothing is suitable”.
Consequences on professional and personal life
Migraine has a very real impact on the professional life of patients, which can make them miss several days of work, or even cause them to lose their job.
According to the study, 1/4 of respondents miss at least 1 day of work per month because of illness. Nearly 1/4 also lose vacation days due to illnessto the detriment of the rest of their lives.
When he worked, Guillaume Leleu was often seized with crises. The situation was unbearable: “We had to find a doctor who takes into consideration the migraine and who agrees to stop me”. But after a while, the only solution was to leave.
“Usually I can’t last more than six months in a box because of my migraines. Employers see my CV, they hire me but once there, I have crises at work, absences. They don’t see the point of keeping me. Here is the problem. If I talk about it, no one takes me; if I don’t talk about it, I end up leaving, sometimes under pressure”, observes the disconcerted young man.
The dramatic working conditions of migraine sufferers can play a role in their socio-economic status or even in their self-esteem. Apart from the loss of their job, the possibilities of evolution are often reduced. According to the survey, 1 in 4 people admit to having lost promotion opportunities because of illness.
For Guillaume Leleu, the disease has paralyzed him, professionally and personally: “I had to lower my ambitions and change disciplines several times because of my illness”.
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Migraine, an invisible disease in society
In 2019, migraine was considered the second disabling disease in the world and the first for women by the World Health Organization (WHO). In France, it is estimated that there are approximately 10 million migraine sufferers (15% of the population), to varying degrees.
Migraine has also been classified by the WHO as one of the twenty diseases with the greatest societal impact. Today, migraine sufferers can feel excluded, as Guillaume Leleu testifies: “I don’t even know what my current place in society is (…) In contact with people, there are smells, or lights that can give me migraines. All electric machines that have indicator lights are unusable for me”.
Guillaume Leleu does not want to talk about “invisible disability“. According to him, “people just refuse to see it” with all the consequences that entails. Expensive and rarely covered treatments, invisibility, cause of dismissal, migraine is a real vector of social insecurity.
“In another country, migraine would have killed me. Not because of a crisis or illness as such, but because of all that it engenders. I could have ended up on the street if my family hadn’t taken me in.” admits William.
To help a person in the midst of a crisis, Guillaume Leleu has some recommendations: avoid sensory stimulation and take the person home to allow him to rest.
Guillaume Leleu, a 29-year-old migraine patient, has had migraines since he was 6 years old. At 9 years old, he saw his first violent crises to be diagnosed 7 years later, at the age of 16. He obtained his RQTH (Recognition of the Quality of Disabled Worker) recently and was therefore recognized as a disabled worker. He is currently awaiting professional reintegration assistance.