His dismissal annihilated. Justine (1), 28, with endometriosis, was a team leader in a mechanical laboratory for three years, when she received a letter from her employer on February 14, 2017. She is thrown out. The reason? Disorganization of the service. "A false pretext"says the young woman, who lives in Lorraine. Behind this dismissal there is actually a complex medical situation. When she received the mail, Justine had been on sick leave for four months, after a surgical procedure she had difficulty overcoming. "I felt discriminated against because of my illness" said Justine, who decided to pursue the company in the labor courts. "Because we are a woman, we are sick, so we have to be fired as a disaster? No". The audition will take place in September. According to the patient associations, different procedures would be in progress for similar cases.
To read also our testimonies:"The company is a world in which endometriosis has no space"
The endometriosis, which is characterized by the presence of cells of uterine origin outside the uterus, would affect between 2 and 4 million women in France, according to patient associations. It develops differently in women who suffer from it (chronic fatigue, very severe pain, risk of infertility …) Sometimes asymptomatic, it can also take a very disabling form. The specificity does not facilitate the diagnosis: it counts on average from seven to ten years of medical peregrination.
"I felt sick in the presence of a child"
Endometriosis has a direct impact on the working life of those most affected. And this, at different levels. The disease can cause severe pain, especially during menstruation. Intestinal disorders, difficulty walking, vomiting, discomfort are the daily quantity of these women in times of crisis. Marie-Cécile, 25, had to interrupt her profession as a maternal assistant for this reason: "I had several worries because of my pains. I felt sick in the presence of a child. I had to interrupt this job because it was becoming too risky."
The difficulties of holding positions are often accompanied by regular and sometimes long work interruptions or by a part-time job to manage pain, medical examinations or operations. A medical marathon that is not without consequences on the evolution of professional careers. Yasmine Candau, president of Endofrance and former head of a communications department, says: "One morning, I wasn't able to get up, my body hurt too much. From there, I was in regular, multi-operated stops. I had to abandon my career and take a less interesting position. It was really hard for me to make this decision, but I had no choice, physically I was no longer able to accept my job ". Like other long-term diseases, endometriosis is an undeniable source of job insecurity. Cécilia, 29, part-time therapist in the cultural sector, fights against payment delays. He is still waiting for those of January and February. As for the daily allowances, they were divided by two. "This drop in budget falls badly because I have to continue to take care of myself, including a specific pill at 67 euros a month, not backed by social security"she worries.
"A female disease"
These sawtooth quarries are more or less well accepted by the professional entourage. Many of the women with endometriosis interviewed by release describe the misunderstanding of colleagues who are powerless in the face of an intimate affection they have never heard of. "Some colleagues live it well, others scare them because they don't know the disease", Testifies Marie-Rose Galès, employed in a town hall in the Paris region and author of the blog Endometriosis my love. A lack of indulgence is not necessarily a prerogative of macho colleagues: Virginie Durant, author of the book Barbed in my body (Editions du Rocher), published at the beginning of this year, reports that he was violently attacked by a former boss after announcing his departure from the magazine where he worked. "He said:" You won't keep your stomachache, I'm a woman, I know it's a pretext to do nothing "." Justine, who attacked her former employer at the labor court, was also confronted with colleagues without "No compassion", in front of what they saw "A female disease". "They didn't want to listen to me, to understand that it is the endometriosis, what it implies"regrets the former team leader. "If he had been a man with prostate cancer, he wouldn't have done it", believes the young woman, who believes she has been a victim of sexist prejudices around the disease. Prejudices that can be assimilated to a double sentence for some patients already victims of other discriminations (because of their skin color, their sexual orientation …).
A dilemma often arises: whether or not to disclose the nature of your illness to your employer? The associations agree that there is no good solution, especially since there is no legal obligation to talk about it.. "It is double-edged. We worked with Air France, which wanted to raise awareness about the problem of endometriosis. And we realized that women dared not talk about their illness for fear of having an impact on their careersexplains Nathalie Clary, president of the Endomind association. For example, a long-range flight attendant may fear that his or her range of action is reduced to medium range. "
Bouillote in a meeting
Faced with the risk of being marginalized or fired, these women can resort to various aids and ask for adjustments to positions if they wish. Yasmine Candau designs different scenarios: "Some women choose to reduce their work time, go part-time and take time to listen to their bodies and their illnesses. Others choose to change jobs, or even to work, to find a job more in line with their disease. " A possibility that some refuse, preferring to rely on painkillers. "When I have convulsions, I will work anyway. I go every day with pain, throat and narrow jaw because otherwise I spend the day in bed", details Aurélie, 35, production manager in the cultural sector. "I prefer to absorb the pain and keep working. I don't want to let the endometriosis take over." Some organize themselves in their own way, like Marie-Rose Galès, an employee of a Parisian town hall, which she hiresgo to a meeting with a bottle of hot water on your stomach " : "This does not prevent me from making my presentation, they are small adaptations."
Telework, although popular with some patients, is still not practiced. "I work from home and see the difference, says Nathalie Clary of Endomind, who worked for years in a travel agency before returning to work at home. Employers would be well advised to find accommodation because it is a pain for the person who is physically forced to go to an office, to keep smiling and not to show that he is suffering. " Sarah Zouak, 29, a social and documentary entrepreneur, says: "Today, being a self-employed person, I can adapt my schedules to my penalties and medical appointments. It was a question of survival for me to have this flexibility, to be able to telework. I was hospitalized several times and I didn't have to tell all my team, since I work mainly from home ". All are in agreement on one point, the world of work "Not suitable".
Many patients change their career path. Options are sometimes reduced due to the many constraints: "Carrying heavy loads, walking, it's complicated. I can't stay in a seated position or stand too long.", lists Michèle Margherite, 32, unemployed, and plans to become a custodian. Reconversions in the field of wellness are frequent. Sandra Tournadre, a former 42-year-old business executive, is preparing to become a sophrologist, and this is no accident: "Sofrology allows me to do according to my state of health and has taught me to live with all his pain."
As for health insurance, endometriosis management is not automatic. This chronic and debilitating disease is not in the list of long-term conditions (ALD). It is however possible with the doctor to perform a "Request out of list", without guarantee of success. "Sometimes one wonders if it is not the patient's head, points to Nathalie Clary, president of Endomind. Women have phase 4 attacks that are supported by ALD in the Paca region, for example, and the patient who will have exactly the same attack in Hauts-de-France is rejected, we don't know why. " Another option for women with endometriosis is to seek recognition of the status of disabled worker (RQTH) from their occupational physician. A relatively unknown approach of the principal concerned. "There is still this vision of handicap necessarily visible, physical, heavy. We cannot imagine all the diseases that can represent an invisible daily handicap", says Yasmine Candau. Patients must face tedious administrative procedures before obtaining this status, temporarily granted. You need to create a highly documented file. The processing times can be very long and the random answers indicate the associations that invoke the institution of «national criteria»Facilitate the process.
The RQTH can provide valuable assistance to women who can no longer combine work and illness. Support for training funding in the event of conversion and post-adjustment is particularly facilitated. "Recognition can be easier than applying it in the field of workHowever, fade the president of Endomind. It is not because we have the RQTH that the employer will agree to adapt the position. Sometimes they can't, for example if they have very few employees ", observes the president of Endomind, adding this "There are other aids when one is no longer able to work, the adult disability allowance or disability pension".
To sensitize its employees to this disease, some companies organize awareness-raising actions in association with the associations. On the initiative of Claire Riolet, 27, alternating with Mercedes Trucks and herself suffering from endometriosis, a sale was organized last February, the profits of which were donated to the Endofrance association. A stand held by volunteers of the association was there to answer questions about this disease. The opportunity for Claire to discover that she is not the only one concerned: "Since then, I have been able to talk to some people more easily without feeling embarrassed." For Mercedes, this first step should introduce the others: "Our nurse will soon be holding a more formal conference on endometriosis. It could also be in the wake of raising awareness among management teams by saying" beware this problem can affect your teams "", anticipates Maxime Provent, executive assistant of Mercedes Trucks, which requires "to awaken consciences.
The Mandarin Oriental hotel in Paris is already in its second action. The first, in March 2017, was organized around the singer Imany, ambassador of Endomind and one of the first French personalities to have included this disease in the public debate. The opportunity for management to discover that some employees have been affected. "This awareness has had significant effects: the enormous involvement of our employees, but also the awareness of human resources. The team will adapt to the status of these collaborators who have taken the first step towards" professional acceptance " of their illness ", ensures Philippe Philippe Leboeuf, general manager of the Mandarin Oriental Hotel (Paris). Actions still rare in companies.
(1) The first name has been changed.
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