Essential
When she was just 23 years old, Ludivine began to feel small pain, fatigue and other slightly strange signs. But, like all the students who juggle between courses, revisions and exams, she put her little inconveniences on stress.
Then the day before the Christmas holidays, between the painful joints, the migraines gastroesophageal reflux, the pasty mouth, the impression of swallowing glass, the woman from Alsace could no longer. “It was very bad, I was at the end of the roll. My attending physician was absent so I made an appointment with his replacement. After explaining my symptoms, she said to me: I think you know what you have, but I am not a specialist. I prefer to entrust you to a competent doctor. And, she made me an appointment with Pr Sibilia, specialized in immunology”, she recalls.
It was this meeting that allowed Ludivine to put words on his troubles.
Lupus: “Autoimmune diseases generally arrive in cohort”
At first, the professor revealed that Ludivine suffered from a gougerot-sjögren syndrome, a systemic autoimmune disease affecting the salivary and lacrimal glands. The latter, also nicknamed dry syndrome, leads to an eye and oral drought. But other symptoms, not sticking with the disease, appeared later. Additional examinations then showed that the young woman suffered from a lupus.
“You should know that autoimmune diseases generally arrive in cohort. When I was also diagnosed with Raynaud syndrome, I recognize that I wondered when it was going to stop”explains the patient.
“If Gougerot-Sjögren’s syndrome was the first to be spotted, it was above all the lupus that bothered me a lot. I had squams on the cheeks in the shape of a Venetian mask, painful redness on the bodice, frostbite on feet, crevasses with hands, very strong pains, migraines, phlebites, a weight loss, dryness, dry loss …”
Lupus: “We live with a sword of damocles on the head”
The causes of the lupus are poorly known. But for Ludivine, they could well be in his DNA. “Normally the lupus is not hereditary, but the lottery of genetics has brought us its share of surprises on the maternal side. Autoimmune diseases are present there”says the woman who will be 45 years next month. If her grandmother – which had several distinctive symptoms of lupus – could never be diagnosed, his mother was some time after Ludivine, and especially after years of unexplained pain. And the disease was particularly aggressive at home.
“Mom made an extreme lupus push of extreme violence: nephropathy, pericarditis, gastroesophageal reflux, very disabling dry syndrome. Then some time later, she developed a lymphoma, a possible suite of lupus. She died in six months. The lupus was discovered late at my mother, but he was of extreme violence.”recalls Ludivine.
“My cousin was also diagnosed with a lupus. It was well judged by corticosteroid therapy, but it quickly developed severe renal damage and eye complications. In February last year, it had a severe hemorrhagic stroke. We were afraid to lose it.”
Faced with her family history, Ludivine realized that the lupus leads her to “Living with a sword of damocles on the head “. However, she can count on the help of her husband and her 10 -year -old son to face her troubles.
“I am very lucky, because I have an extremely helpful husband. If there is someone to admire, it is my husband. My pains appear mainly at night. I am forced to get up and get in motion, to put hot on my pain. He is always there to hold my hand, tell me a nice word. He has very short nights because of my lupus. The caregivers are really essential.”
Lupus: “fatigue turns off”
In addition to pain, one of the most difficult to manage symptoms on a daily basis for Ludivine is fatigue. “It impacts everything: social life, friendly life, parental life, family life, couple life, professional life … fatigue turns us off”she explains.
Meal with friends, outings … “I had to learn to say no. I was, in fact, forced to decline certain invitations, because I was sick or tired. It was not always well understood by everyone. But I have a small sincere friendly core and which understands.”
If Ludivine was able to take advantage of the great adaptability of her relatives and his family, it was more difficult for the former librarian to reconcile disease and work. “I lived a life as a fulfilled librarian. I was passionate about what I was doing, I was a trainer and lecturer at the university. I was not afraid to take my car, to make kilometers and to wear bags of books. I participated in conferences and university research. I really had a fulfilled professional life for many years”. But as the disorders and pain have been more present especially in recent years, holding this position has been increasingly complicated.
Difficulties sometimes ignored by the professional entourage
“I was the subject of a professional reclassification 3 years ago. I became an executive assistant in a theater. On paper, it was perfect. However, in the end, I realized that events was a universe not very suitable for my illness. It is very stressful, we work in the evening, there are not really hours, there are a lot of stairs. The life of a theater, it is a real bubb autoimmunes like me “recognizes Ludivine.
It is all the more difficult that the difficulties are not always perceived by the professional entourage. “In the universe of the event, we are very often well dressed and dressed, so people do not imagine that I am sick. But whether we are in a jeans or in a sequined dress, we always have a painful body.”
There have of course been several attempts at occupational medicine and the employer to adapt the position, but that was not enough. “I dug my fatigue and I chained the thrusts”explains the former librarian. “”In addition, I was unlucky: at the same time, I had to undergo 4 surgical interventions in just 8 months, while we normally leave 3 months between each intervention. Fatigue has accumulated, the body has exhausted. I am currently on long sick leave. “
“We must communicate more on invisible disabilities in the world of work”
“Carl Jung says that the disease never happens by chance, that it makes us take different life trajectories. I think there is that, indeed”. And the new trajectory for Ludivine could go through the sharing of her experience and help other patients. She has just submitted her candidacy to integrate the training of an expert patient at the Sorbonne. “”The educational commission will meet in May “. She also provides with the agreement of all her doctors, to start training in aid and relational care relationships in a referral aim.
“I’m going to need time, I know it. But I’m going to take it. Even if it ultimately leads to a disability. You have to agree to find yourself at a time of vulnerability to perhaps bounce better. These new experiences are singular, but they are also a source of strength and motivation.”
If Ludivine is starting to consider a new trajectory, it however calls for better consideration of employees affected by disabling diseases in the world of work. “In general, there is progress to be made on a professional level. It is necessary to communicate more on invisible disabilities in the world of work, in particular by informing and forming more employers. “
“We can work with a lupus or an autoimmune disease, we just need positions adapted to our capacities”, she adds.
“This lupus day is a gift: it makes a pathology visible that is invisible”
This Saturday, May 10 is World Lupus World Awareness Day. “For me, this day is important, and it will be all the more this year since May 9, it is the anniversary of the departure of Maman who died of a lupus. I think of her who is no longer there to see the advances. She always asked me to fight to make this disease known so that there is no one who leaves under the same conditions as she. Thus, this lupus day is a gift: it makes it visible.
And for people who have just learned that they have a lupus, Ludivine has some advice to limit disorders: watch out for a healthy life, eating balanced by avoiding ultra-transformed products as much as possible, turn to suitable physical activity that “Do good for morale, physically and protect the joints” as well as towards meditation.
She also adds: “The therapeutic education workshops are also useful, even if you think you know your illness. We always learn something about pathology, and on a human level, it’s also beneficial. Drinking coffee with someone who has the same disease, that is good. We don’t need many words to understand each other.”
