Violaine, victim of a very serious Guillain-Barré syndrome 4 years ago, tells us about her descent into hell, her long rehabilitation and her return to daily life.
- Guillain-Barré syndrome is a rare condition whose cause is not yet fully understood.
- Most patients recover fully, but a small number may remain disabled or even die from complications related to the disease.
- Victim of Guillain-Barré syndrome, Violaine recounts her journey.
When I discover Violaine’s journey through his book “Patient” (Bold editions), my first reaction will be to put into perspective the problems that mark my daily life as a young mother. At 28, this bank employee with a well-ordered life suffered from Guillain-Barré syndrome (GBS). “We’re not sure of anything, but I probably caught the virus at my workplace,” the young woman speculates in a small, broken voice.
Guillain-Barré syndrome: paralysis spreads throughout the body
In February 2019, Violaine experienced nausea, cramps, nerve discharge in her legs and neck pain. After ten days of continuous suffering and an unsuccessful trip to the emergency room, the designer returned to the hospital a second time, where a series of examinations caused by her lack of reflexes allowed her to be diagnosed with GBS this time. Three months of ordeal followed in the intensive care unit.
“In my artificial sleep, the doctors do a lumbar puncture to confirm the diagnosis, and I am given the immunoglobulin treatment which is supposed to stop the progression of the syndrome. Too bad, I got it too late “, she says. “When I wake up, I’m naked, in a hospital gown, lying down and numb. I have two big tubes in my mouth connected to a noisy machine that continually blows air into my lungs,” she continues. The paralysis gradually spreads throughout his body, requiring a tracheotomy. Endless, “my days are punctuated by visits from health personnel, between the administration of treatments, daily washing (in bed), Guillaume the physiotherapist’s mobilization session and diaper changes. Goodbye dignity”, she writes in her work.
“Without voice, with an inert body and just a moving left eye, I struggle to make myself understood”, still remembers Violaine who, crippled by extreme pain despite powerful sedatives and cut off from her 18-month-old little boy, then feared “to become crazy”.
Guillain-Barré syndrome: the body overcomes the virus and comes back to life
But despite bouts of despair and the desire to put an end to it, the young woman hangs on. Little by little, her sports body overcomes the virus and comes back to life. Then began a very long course of rehabilitation, still ongoing today. Everything must be relearned: breathing, eating, speaking, mobility… Only the brain has not been affected.
“My greatest victory is having managed to leave the rehabilitation center to live at home, where the shower and toilets have been adapted to my abilities. Currently, I can walk around 800 meters with a cane, I ‘take care of my son and I work from home for a communications agency’ with the status of disabled worker (RQTH). But despite all this progress, I still get tired very quickly, I suffer a lot and I take a lot of medication . I’m still progressing, but very slowly. Living with me is a bit like sharing the daily life of grandma Ginette, 80 years old.” the thirty-year-old told me. “For me, the hardest thing was realizing that I will never recover all my abilities, because I clung to this illusion for a long time,” she analyzes.
Guillain-Barré syndrome: separation and new love story
To all these trials will be added that of separation. “We separated last year, because with Sébastien, we were no longer happy together. My life accident accentuated our differences and disagreements. This was an accelerator of problems. Difficult to make a “trouple” with SGB”she sums up with emotion.
Anger, feeling of injustice, disappointment, impatience, discouragement… Experiencing all sorts of trying emotions, Violaine nevertheless retains not only the negative from her tragic story. She particularly salutes the remarkable work of the health professionals who have been, or still are, at her side (some have even become true friends). Despite numerous administrative difficulties* and problems accessing premises, having changed jobs and no longer devoting her time to tasks that she hated is also a source of well-being. And against all odds, Violaine, although convinced of having finished with men, also quickly found love again.
“Florian fell in love with me like that, while he was delivering me a package. At first, I didn’t believe it because I found myself and I still find myself very ugly because of my after-effects, but I got reason to trust him, we are happy together. He understands me, listens to me, consoles me when I get demoralized, massages my legs when my nocturnal neuropathic pain tears through my quadriceps. He supports me, in every sense of the word.” , she rejoices.
Why did she decide to write and draw her journey? “For my son. He’s the one who gave me the strength to fight, I didn’t want him to see a mother who gives up.” replies Violaine straight away.
For more awareness and research on Guillain-Barré syndrome
This Orleans would also like more awareness and research into Guillain-Barré syndrome. “If I had been a little more aware of the existence of this pathology, I would have gone to the emergency room straight away. When I first noticed the symptoms, I thought of everything except that,” she regrets. “Even doctors know little about this disease, especially when it is very severe like in my case. I actually had a lot of trouble finding a general practitioner who was willing to follow me, because I am a bit of an enigma to them . I had the unpleasant impression that they were passing the hot potato on to each other”, she adds.
“More generally, nothing is being done at the policy level to truly include disability in our society,” she also notes.
Finally, the author will address the question of her sexuality. “As soon as you pass into the category of disabled woman, we consider that you no longer fuck, which is completely false. For example, I was never asked if I wanted another child, offered to take the pill or even explained why I still didn’t have my period a year and a half after hospitalization. I had to ask the questions myself”, deplores Violaine vigorously.
What is Guillain-Barré syndrome?
Guillain-Barré syndrome is a condition whose cause is not yet fully understood. In most cases, the disease is triggered following a bacterial or viral infection which will lead the patient’s immune system to attack its own body.
Most patients recover fully, but a small number may remain disabled or even die from complications related to the disease, such as paralysis of the breathing muscles, sepsis, pulmonary embolism or cardiac arrest.
“Although it can affect people of any age, GBS is more common in adults and males,” concludes the WHO.
*Particularly with Health Insurance and Pôle emploi.
