This question has upset more than one, and yet the answer often reflects the hope and fighting spirit of sick people. Here is a small anthology of our favorite answers, each more touching than the next …
When it falls on you, the disease is experienced as a tidal wave by the person and by those around him. A storm that turns life upside down and above all, the vision we have of the world around us. Amazement and shock can quickly give way to anger and then acceptance. This phase, sometimes long, is often necessary to feel better and to continue living as peacefully as possible. Obviously, each individual has their own way of living with the disease, and yet there are similarities between those affected by a severe pathology or not. One thing brings them all together: the desire to fight for themselves and for their loved ones.
Surround yourself with caring people
Benevolence is very often evoked by people who testify about their daily life with the disease. Just like Ketsia, suffering from Ménière’s disease who tells us: “I can count on the attentive and benevolent ear of my general practitioner. On the side of my relatives, three people have supported me from the start, including my sister with whom I talk a lot. It makes me feel good.” Ketsia is not the only one to speak of benevolence. Aurélie, who has suffered from Lyme disease for many years, also evokes this quality: “I finally had a clear diagnosis, posed by a benevolent doctor who knew how to listen to me. ” If benevolence is sought from loved ones, it is also sought after by the medical profession, which can sometimes be lacking in tact, especially when the diagnosis of a serious illness is announced. As for the caregivers, they also evoke benevolence. This is the case of Sylvain who takes care of his mother suffering from Alzheimer’s disease: “benevolence, this is the key to taking care of an Alzheimer patient”Explains this former nurse anesthetist.
Combative patients: everyday super heroes
As much as sick people often speak of benevolence, this quality goes hand in hand with fighting spirit. Combat is everywhere in the daily life of a person suffering from an illness. When asked about what they would like to deliver as a message, all of them evoke life as a struggle. Like super heroes, patients sometimes see their pathology as an enemy with which to live, but which must also be fought with all one’s might. This is what Karine Brailly does, suffering from ALS (Charcot’s disease) which fights the disease thanks to painting: “This art allows me to stop thinking about the disease. Along with other patients, we are going to exhibit our works in a cultural center next November. I hope this exhibition will show all patients that even with an incurable disease, we can still create and have projects. ” Karin Tourmente-Leroux, suffering from a very rare blood cancer, also evokes this war which broke out after the announcement of the diagnosis: ““ we must react and fight! ” Fight, yes, but still with the hope that life still offers beautiful gifts …
Believe in your lucky star
Cancer, rare disease, disability … Almost all people affected by the disease have one desire in common: to keep hope. A mantra shared by Mélanie who had 9 breast tumors and had the breast removed: “you have to believe in your lucky star” she confides in us. Hope is also an integral part of the life of Thomas Rodier who is affected by retinitis pigmentosa (he risks becoming blind) at only 20 years old: “I keep hope of not losing sight and I hope that the diagnosis of my illness could be earlier to protect other young people like me ”he testifies. A future focused on their health, but also on the well-being of other patients with whom they forge unwavering links.