Edwina is a young woman with fibromyalgia. This illness, which affects the central nervous system, which is not well known, has prevented her from being at 100% of her physical capacities since 2010. She therefore ceased her activities as a household help. Only, however, recognized as sick in 2019, recently, her mutual insurance company decided to drop her, because occupational medicine considers that she is fit to work, despite the pain she feels. She wanted to tell us about her fight by pressing the orange Alert us button.
Suffering from fibromyalgia since 2010, Edwina was not recognized as such until 2019. This disease, which affects the nervous system, has as symptoms considerable pain felt in one or more parts of the body. 85% of people with this syndrome are women.
Recognized by the WHO only in 1992, first as a rheumatic disease, it has been recognized as a disease in its own right since January 2006. Before, it was referred to as simple “chronic pain”. In Belgium, the disease was only recognized in 2011 as a “disabling disease”, but this is not yet the case everywhere: in our French neighbors for example, fibromyalgia is still categorized as a syndrome and not a disease. In our country, about 300,000 people are affected.
I have to be careful with every move
“We are taken for liars, for profiteers of the system, because our disease is not visible on the outside, but we suffer well inside“, explains Edwina. This mother of two children, resident of Durbuy, explains suffering in her everyday life, although her body is completely normal, even after checking with MRIs and scanners.
“Sometimes I feel like electric shocks, sometimes burns. If I stay too long in one place, my muscles will go numb. I have to pay attention to every gesture, to the time each action takes. When I do strenuous activity the next day I feel it all over my body“, she specifies. If the pains are of varying degrees, there are certain days when they are no longer bearable.
“It’s rare, but sometimes I can’t get up. I have to stay in bed all day. Me who loves to move, do things, it drives me crazy“, laments Edwina. If she does not want to affirm that this disease “spoils” her life, she admits to having a weight on her shoulders. “It slows me down in everything, I have to do everything at my ease so as not to rush my muscles, it annoys me more than it saddens me“.
Occupational medicine no longer recognizes it
At the end of 2021, when she was considered unable to work, the mutual backed down. Edwina loses her status as a disabled person, and the aid that goes with it: her health insurance considers her able to work. “I was given a 5-minute exam to tell me that I was fit to work because I had no pain at the time of the exam”, she explains. “I was told that if I knew how to clean at home, I knew how to do it at others’. work“, she is indignant.
Edwina then worked as a housekeeper, which she had to put on hold because of her pain. “While at home, I do my cleaning very slowly so as not to force too much. I couldn’t chain houses, it’s just impossible for my body“.
But this 36-year-old young woman, with an active temperament, therefore decided to take her health insurance to justice to assert her rights and her illness. While waiting for more information, she is training as a wedding planner; a job that allows him not to have to strain his body too much.
“Decision of the Medical Adviser”
To better understand this backpedaling of the Edwina mutual insurance company, we went to meet Christophe De Letter, return to work coordinator at the Mutualité Chrétienne. In particular, he explains to us the process of judging a patient’s work capacity. “The ability to work or not is judged by the medical advisor“, he explains.
“If the doctor deems her fit, then there is a stoppage of benefits. But the doctor must motivate, justify his decision, after having had all the elements in hand“Here, the doctor who analyzed Edwina therefore judged that she was fit to return to her physical work, despite the pain she continually feels.
“You can’t stay on health insurance for life“, explains Christophe De Letter. “In this case of chronic illness, patients have to live with these symptoms. Besides, most people don’t want to be there too long. Autonomy is an important thing for most“.
Here, the doctor judged that the lesions and disorders that Edwina presents do not lead to a reduction in capacity of at least 66%, the scale that must be reached to be judged as unable to work.
A very real disease
If Edwina’s mutual insurance company no longer supports her, Doctor Marianne Parache is categorical: fibromyalgia is a disease, and even if it cannot be cured, it can be treated. “It’s incurable at the moment, but it’s important to treat the disease. Physical reactivation, muscle exercises, flexibility…”
“We can’t do much“, explains Anne, another fibromyalgia patient.I try to stay active, but it still hurts. Especially, during the change of seasons, it sometimes takes me 20 to 30 minutes to get out of bed, to get up.
While waiting to complete her training, Edwina fights with other people for recognition of her illness. “I am in contact with other people on Facebook. We help each other, we try to make this disease known. It’s still very difficult because once again, people don’t believe us, because on the outside, we don’t look sick…“