2023-11-18 12:00:00
In the psycho-oncology unit of the Institut Curie, in Paris, in 2010. LAURENT VILLERET/PINK/SAIF IMAGES
This morning, Maria (who wishes to remain anonymous), 68 years old, is supposed to join Anne-Marie Benharoun for a video interview. In a tired voice, she explains that she can’t get the software to work: “Since my operations, my brain no longer works”, whispers the retiree. The appointment will therefore be made by telephone.
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In a somewhat disjointed manner, Maria recounts the three years of treatments, pain and anguish that have passed since the announcement of her breast cancer. “It’s normal to be exhausted: you’ve had three general anesthetics in a very short time, it’s very traumatic for the body. I experienced this too, for reasons other than yours. It’s hard to get back on track.”, assures his interlocutor. Anne-Marie Benharoun is neither a doctor nor a psychologist: as a “patient partner”, her knowledge comes first and foremost from her experiences, from the ordeal of breast cancer that she went through in 2014. For an hour conversation, she draws on her story to forge a bond with Maria and try to understand the consequences of the illness on her daily life.
Value their experience
Still little known in France, patient partners emerged in the Anglo-Saxon world, particularly in Canada, at the end of the 20th century. In France, they began to appear at the beginning of the 2000s. Volunteers or employees, they are mobilized in associations and in the oncology or diabetology departments of private or public establishments in Lille, Bordeaux, Lyon or Paris to inform patients, lead workshops or help caregivers prepare certain announcements. Since 2009, there has even been specific training, the University of Patients-Sorbonne, associated with the Pitié-Salpêtrière hospital in Paris. Each year, seventy-five students suffering from a chronic illness learn to use their experience to benefit other patients.
Since her cancer, Anne-Marie Benharoun, 52 years old, with large round glasses and close-cropped red hair, still lives daily with fatigue and pain. By listening to patients’ problems, she created the service she would have needed at the time: “When I had my breasts removed, I was completely unprepared for the terrible shock of the visual result. I would have liked to speak to another patient beforehand to be able to find out”remembers the former professional support trainer, who gradually gave up her job to devote more time to patients.
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