While one in ten women is affected by endometriosis in France, the consideration of this disease at work remains a subject that is too often forgotten in the daily lives of employees.
Yet, the impacts are high, both for individuals and for the organization, and position women's health as a major issue for companies.
Valérie Desplanches, president and co-founder of the Foundation for Research on Endometriosis, explains.
The impact of endometriosis on women...
Among women suffering from endometriosis, 65% of them say that the disease has significant consequences on their well-being at work. Valérie Desplanches also reveals that "a majority of employees don't talk about it to anyone around them. Neither to the Human Resources representatives nor to the occupational physician and even less to their manager. However, the subject has its place within the company. First of all, because of the demographic reality it encompasses.
And there, it is difficult to minimize the figures. "The disease affects 10% to 20% of women, 70% of them have very significant pain and the symptoms are the most disabling between the ages of 30 and 35, i.e. in the middle of a professional investment, when careers are starting or accelerating," says the president and co-founder of the Foundation for Research on Endometriosis. So many difficulties experienced in the shadows. "Women come to hide, to hide their condition for fear of being penalized... deplores Valérie Desplanches. And this self-censorship obviously becomes penalizing for them. »
… But also the organization as a whole!
Faced with the obstacles encountered, nearly a quarter of women with endometriosis preferred to give up their position or career because of the pressure of daily life or a hostile environment. "There is therefore a real issue of loss of talent, but also of loss of productivity," says the specialist. And contrary to what one might think, this decrease is not due to absenteeism but rather to presenteeism! More than 80% of the women affected say they force themselves to come to work despite the pain, knowing that they will not be able to be operational in these moments because of the pain or fatigue. "Fatigue is one of the most prevalent symptoms.
Not to mention the anxiety generated by the disease, and the mental load that comes with it. "As it is a chronic disease that comes back constantly, women are constantly anticipating, organizing their lives around the disease," confirms the specialist.
But that's not all. It is also necessary to take into account the family and friends because the impacts on the organization and life of the homes are numerous. Valérie Desplanches notes that 10% of employees are spouses of women suffering from endometriosis. They also need time to be present at medical appointments, look after children, and manage the increased mental load. If we want to provide better care for women, we must therefore take into account the entire health value chain (caregivers, relatives, etc.) and treat the disease as an aspect of social life, and not as a single medical matter.
The power of companies to act
There is no doubt that endometriosis is a real factor of inequality in the world of work. And makes the company a significant player in the daily support of employees.
A necessary awareness
Adapting work to the needs of affected women starts with understanding what they are going through. Therefore, the first essential step is above all to make as many people as possible aware of the reality of the disease, employees, managers and especially managers, so that the professional entourage can properly meet the expectations of the employees concerned. By setting up awareness-raising and communication mechanisms, etc.
But also by listening! Today, the younger generations feel more concerned than their elders by this subject. "We see it when we intervene in high schools, it is the boys who ask the most questions because they need to understand, because they feel they are part of the solution," says Valérie Desplanches. But before these young people take the reins in companies, it will take time. And it is this state of latency today that must be addressed, without detour.
A layout of the workspace and space-time
The good news is that these dialogues can give rise to different key forms of accompaniment. "I am thinking, among other things, of the development of premises to offer better equipped sanitary facilities, the creation of safe spaces to isolate and rest at certain painful moments, the possibility of offering adapted mutual insurance packages to relieve the heavy expenses related to the disease... ", notes Valérie Desplanches.
So many actions to be put in place, the signals of which can play on the freedom of speech. But for the co-founder of the Foundation, it is above all the organization of working time that will have to be rethought to really relieve women's physical and mental health. "Because the latter need flexibility above all," she says. In the way of teleworking on the one hand - in particular with the number of days that can be requested and the ease with which it is possible to do so - but also in the adaptability of the schedules.
However, these issues directly affect the culture of the company. "It is therefore crucial to co-construct these policies with employers and employees," recommends the specialist. And this is all the more so in the current context.
If we broaden the issue of women's health, there are 10% of women who suffer from polycystic ovary syndrome, between 15 and 40% of women who suffer from pelvic congestion, an increase in ART pathways due to a decline in fertility... "And with the impact of factors related to the environment, particularly with endocrine disruptors, it is a safe bet that it will continue to worsen with increasingly severe forms, younger and younger," concludes Valérie Desplanches.
So how can we think about the overall performance of tomorrow's companies to avoid such a large number of individuals being excluded? By inventing, together, today, a world of work adapted to the vital requirements of those who make it up.
