By means of Veronique Weber
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She keeps laughing. Even if she mentions this one pain that make his days and nights a nightmare. She wants to keep this smile for her family, for her husband, for her two children. “I’m not complaining, I don’t want them to have that image of me,” she says. But she admits that when she is alone, the tears flow…
This woman who decided to testify to what she endures every day is Isabelle de Boishebert. A resident of Dieppe (Seine-Maritime), 51 years old, who wants to make as many people as possible aware of the reality of what she endures, and her friends from Dieppe and Rouen undergo: Fadma, Alexis, Carole, Bénédicte and Mathias .
They are all affected by fibromyalgia. a so-called invisible diseasebut which disrupts their daily lives.
She suffers from fibromyalgia and suffers from chronic pain
“Fibromyalgia is a disease that affects the tendons, muscles, joints… Doctors identify about a hundred different symptoms. For example, this muscle pain gives the feeling of constantly having the flu, with pain, tingling and terrible physical pain,” confides de Dieppoise.
To explain what she feels, Isabelle de Boishebert has an image: “I feel like my skeleton is too big for my body. I’m under pressure, I feel like I’m being squeezed, I’m always tense. I also suffer from vibrations, I have difficulty climbing stairs. These pains are constant. In ten years I have not known a day without pain. »
Initially pain like sciatica
It all started for her with pain in her right leg, “like sciatica,” she says. The treatment is not working, so she increases the number of tests. But the pain continues to spread through his body, without finding its origin.
From doctors to neurologists, from physiotherapist to amazing teacher, she has countless appointments while doing her own research. “A doctor even told me it was in my head,” she protests.
Isabelle de Boishebert found friends on social networks. Friends like her with fibromyalgia, with whom she can talk about her daily life. Mélanie, a resident of Bosc-le-Hard, founded the Fibromyalgia 276 association. On Facebook, Isabelle de Boishebert exchanges with people from Rouen, such as Fadma and Mathias, or with people from Dieppe, such as Bénédicte and Carole. And if these exchanges happen through screens, it is simply because their health conditions do not allow them to meet each other easily. “We never feel good at the same time,” she says.
Ultimately it was a doctor from Dieppe who gave a name to his ailments. “I am classified as having severe fibromyalgia,” she confides. A diagnosis validated by a neurologist from Rouen after two and a half years of wandering.
That may seem like a lot, “but in the end I consider myself very lucky because I have met caring specialists. Some It takes years for patients to be diagnosed, and some not,” Isabelle de Boishebert confides with emotion. Before adding: “We don’t know what causes the disease. »
Cut off from the outside world
Every day is different, with ups and downs. Sometimes so low that she can’t leave her house. Over the months and years she has isolated herself from the world around her. She no longer rides outside Dieppe for fear she will get hurt at the worst possible time. Fortunately, she has the support of her husband. An opportunity according to her: “Many patients lose their partners. I thank him for being by my side,” she says emotionally.
“I have tried every conceivable treatment”
Especially since his social life has diminished greatly over the past eight years. She had to give up her professional activity. She, a saleswoman at a major brand in the Dieppe region, experienced the loss of her job as heartbreaking.
Difficult to find a job
She tried to find work. In vain. “And it’s not for lack of trying. Even if my position was settled, nothing is feasible. I can only work in the morning, a maximum of four hours and with breaks, because I suffer from chronic fatigue. But how do you find a job? ” she asks.
To cope with this pain, she tested all the unimaginable treatments, “which caused me a lot of disappointment,” de Dieppoise confides. She turned to the Dieppe pain center, to a sophrologist, a reflexologist, a psychologist…
“What helped and calmed me today is sophrology. I manage to put myself in my bubble and I feel good there,” she says. She is also monitored by a psychiatrist.
“It’s not in my head”
Isabelle de Boishebert had to have one acceptance work of illness, of pain. But this work is all the more difficult because the path of patients sometimes crosses that of ‘fibrosceptics’. “But it’s not in the head, it’s destructive,” she emphasizes. The look of these people is heavy: “We are not weaklings, people on welfare. I feel guilty enough that I can’t work anymore! »
Now she has decided to fight for it let the voices of the sick be heard just like her, she is affected by fibromyalgia. To recognize this disease as one long-term condition and that patients can be better understood by those around them.
To this end, she promised to write to the deputies – including Sébastien Jumel, deputy of Dieppe, with whom she would have an appointment on November 16 -, to the presidents of the National Assembly and the Senate… So that everyone knows the situation of patients, when the knowledge of fibromyalgia returns to their meetings.
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