Posted Jan 18, 2022, 7:00 AM
It's official: endometriosis has been recognized as a long-term condition (ALD) since January 13. Two days earlier, Emmanuel Macron unveiled a “national strategy” to fight against this disease, the name of which has only recently begun to be mentioned, although it has always existed.
Taboo, because linked to female intimacy and above all, to menstruation, endometriosis is due to the implantation of endometrial cells outside the uterine cavity, thus likely to cling to organs such as the ovaries, the bowel, bladder, etc. Result: intense and chronic pain can irradiate the whole body, and lead to various operations, even to the complete removal of the uterus.
“My resistance to pain has become enormous”
Laura, 28, was diagnosed in June 2021. A few months later, she started her career as a hotel butler. Accustomed to living with attacks of acute pain, she says: “I always tell myself that I will be able to overcome them, because the pain comes gradually, and sometimes ends up going down again”. In a daily service to customers, always on the alert, how to continue to work? “You're so adrenaline pumped, you don't even feel the pain anymore. You can see me serving, when I'm in great pain… but I'm deceiving. My resistance has become enormous”, she explains.
Only sometimes, a certain tolerance threshold is reached: “I once had to leave my team two hours before a very important event, because I was in too much pain. I was then arrested for a week”, remembers the young woman.
10% of women concerned
Vastly underdiagnosed, and buried in false beliefs (“It's normal to have pain when you have your period! »), this pathology affects almost 10% of women. There is bound to be one of your colleagues who is concerned… and who will be happy that the ALD status is finally recognized.
This recognition gives patients rights such as 100% coverage by Medicare and facilitates certain work arrangements (in particular for going to medical appointments) as well as sick leave by reducing the deficiency which is only retained for the first work stoppage for 3 years, according to the text voted at the Assembly.
How to manage endometriosis at work? Like Laura, many women have responded to our call to testify on social networks. They remind us that if the pain is permanent, it often peaks at the time of menstruation.
For Marine, a speech therapist in Brussels, this translates into severe pain in the back and lower abdomen. “I'm lucky to be a liberal, which allows me to anticipate. If my period comes on Thursday, I don't work from Thursday to Sunday”, she explains. Which necessarily means a loss of income for the young woman, depriving herself of working days because of her illness.
Office rules: a nightmare
In the office, during normal working hours, menstrual days are sources of stress. Myriam, product owner, fears long meetings, which she has to leave to go and change. Forced to justify her need to be absent in front of colleagues, she says: “It makes everyone laugh, and the thought ‘bah, put on a tampon' is almost instantaneous”, she writes to us.
In addition, complications related to endometriosis are still poorly understood and can be very disabling. Johanna, 28, with deep digestive endometriosis, wrote to us on Instagram: “Before my operation, I had attacks such that I sometimes had to empty myself in the toilet for several hours. I let you imagine when you are at work… Bleeding could also occur suddenly”.
A few companies have opted for the creation of menstrual leave. This recourse only exists today in a few countries, such as in Japan, since 1947… but very little used; or even experienced as stigmatizing in South Korea. In London, it does not exist, but in April 2021, a cooperative society in Montpellier, introduced it for the first time, after an anonymous questionnaire revealed that 9 employees out of 16 had painful periods.
A wall of misunderstanding
This Montpellier company is an exception in its concern for women's well-being. Most of the time, the misunderstanding of others is quasi-systematic. Laura, for example, had only disclosed her illness to one of the hotel managers, a woman: “To the men, I said nothing. It would have taken me too much energy to explain to them, because the gentlemen don't understand what I'm talking about.”. For Johanna, on the contrary, it was the women who were the most critical: “Those who don't have endometriosis go wild on thoughts like ‘I have my period too and I'm not complaining like that'”.
Passing for “whispers”, or in bad faith, the victims of endometriosis are, on the contrary, very resistant to pain. It is up to them, however, to make do with a superior who is not very understanding… or even to feel guilty about having to be absent, so much is the ignorance of this disease that its effects are minimized.
“Endometriosis is a permanent mental burden”
Endometriosis is therefore now recognized as “a disease whose severity and/or chronic nature requires prolonged and particularly costly treatment”, after a unanimous vote of the National Assembly. Physiotherapy, osteopathy, acupuncture, naturopathy… various treatments can reduce pain by helping to improve the patient's lifestyle.
“In fact, it's a permanent mental load. You have to have an anti-inflammatory routine: good sleep and a special diet, with meals at fixed times”, explains Laura. Today office manager, she has regular schedules which make it easier for her to take treatment at very fixed times. However, she will return to the profession of butler: “I don't want endometriosis to affect my life”, she points out. Same determination at Marine, our speech therapist: “I decided that this disease was out of the question to limit me”.
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