“I have lived with Crohn’s disease for thirty years and I have always hidden it from my employers”, recognizes Hélène (at the request of the witnesses, the first names have been changed). At the start of her career, while working in the banking sector, the young woman managed pain crises and received remarks such as: “You look really shot. » Then, when she reoriented herself towards a master’s degree in education, her director of education refused to excuse her absence from the exams, due to the complications of her pathology. “After all, it’s not cancer!” », he throws at her. Not enough to encourage her to confide when she joins the national education system.
But recently, the Covid-19 crisis has pushed her to expose herself more. “During the first confinement of 2020, I was asked to teach the children of caregivers and I had to refuse because I was at risk, due to my immunosuppressive treatment”, she explains. Her manager was delicate enough to welcome her refusal, without being intrusive. Hélène will not say more about her pathology, like millions of people hiding a disabling problem or a sensory, cognitive, psychic and even motor handicap that can go unnoticed for a while.
The pandemic could be at the origin of a new invisible handicap, also difficult to evoke: the famous long Covid. “It manifests with multiple lasting symptoms, such as overwhelming fatigue, mental fog, headaches, shortness of breath and chest tightness, pain, loss of taste and smell, etc. It rather affects people under the age of 60, therefore still in activity, having not even developed a serious form and who feel guilty for not going up the slope fast enough. », explains Doctor Laurent Uzan, cardiologist at the Sport Health Medical Institute and co-author, with Doctor Nicolas Barizien, of Covid long, how to get out of it (Marabout, 2021). Some do not assume it, like Matthieu, a biology researcher in a Lyon laboratory. “After my contamination last year, I felt like I was thinking in slow motion for months. I didn’t say anything to my colleagues, but I had a hard time coping and got myself into trouble on a project. »
“Not in my place”
Many want to escape stigmatization, whether in office or when hired. Louise, a young 26-year-old engineer, recognized as dyslexic since primary school, also wanted “to test oneself” in the professional world. She does not breathe a word about her handicap to the managers of the start-up where she landed her end-of-studies internship. “They quickly blamed me for my spelling mistakes and I had to reveal my dyslexia to them. They didn’t really blame me, but I felt out of place.” confides Louise. Ditto for his first CDD in a research laboratory. “The first documents I wrote attracted attention, but fortunately my managers just encouraged me to concentrate on my research and took care of finalizing the writing. » Louise is now preparing to embark on a thesis. And after ? “I still don’t know if it’s in my interest to talk about my situation to my future employers, I don’t know anything about my rights, the advantages or the risks of recognition. » And even if her handicap is invisible, she knows that it will be difficult to hide it for long, at the risk of exhausting herself to compensate.
What to do ? To be silent… or to say everything? If yes, when? “It is difficult to answer this question, each situation being different, recognizes Doctor Rodrigue Deleens, pain specialist at the University Hospital of Rouen and author of Living better with fibromyalgia (Leduc, 2018). With equal disease, people are more or less severely affected. It is therefore not necessary to systematize the recognition of a disability, because the label can imprison in the disability. But minimizing – even denying – a problem leads to overcompensation, which exposes you to physical, psychological or relational breakdown. » It is unfortunate to come to this, when there is aid granted to people benefiting, for example, from recognition of the status of disabled worker (RQTH).
Still, it is sometimes psychologically unthinkable to associate one’s illness with a disability. This is what Véronique Bustreel, Director of Innovation, Evaluation and Strategy at the Association for the management of the fund for the integration of people with disabilities (Agefiph), notes. “While disability has been better recognized since the law of 2005, support solutions are not always adapted to the sensitivity of people and the reality of their disorder. We must get out of the silo logic where we are either sick or in good health, or disabled or not. It is for example possible to modulate a therapeutic part-time over time. This would allow the greatest number of people to use it without embarrassment, and to eventually move towards an uninhibited recognition. »
Awareness
Because in the end, “The main thing is to be able to work like anyone else despite your handicap, says Dr. Laurence Lévy-Amon, occupational physician. It is not a question of labeling anyone, but of arranging the position, by adapting the working time and the tools, in order to compensate for a difficulty”. All this is only possible after recognition of the problem, of course, and only on the decision of the employee, the occupational doctor being bound by medical secrecy. The latter can however be alerted by a person in charge to the difficulties of a person who does not recognize his own handicap, following a neurological disorder or heavy treatments, for example. “We then offer assessments carried out by external experts, which promotes awareness”, says the doctor. And in case of persistent denial? “Incapacity can be declared if the employee loses his footing. »
This is precisely what Jacques fears for his son Julien, 24, who has suffered from autism since childhood. For the young man, it is only difficulties of concentration. “By dint of help and perseverance, he won his baccalaureate, an IUT in electronics and a job in a small company which more or less knows his problem. But it won’t last forever worries his father. He should ask for the status of disabled worker to be protected, but he opposes it. After all, he is happy for the moment. » The time may come, thanks to a meeting with a HRD or an occupational physician who will open his eyes to the advantages of recognition.
This article was produced as part of the 3and edition of the University of the network of disability referents, in partnership with Agefiph.