On the occasion of World Lupus Day on May 10, 2023, we met Anne-Sophie, diagnosed with lupus after months of therapeutic wandering. First symptoms, denial, isolation… Testimony of a fighter.
THE May 10 It’s World Day lupus. This chronic autoimmune disease, rarehas support complicated. It affects many more women than men. Among them, Anne-Sophie, 35, diagnosed after months of therapeutic wandering. First symptomsdenial, isolation… Testimony of a fighter.
Le Journal des Femmes: When and how did you discover that you had lupus?
I was diagnosed 6 years ago, in 2017. I came back from a ski vacation and I had tendinitis all over the place.. I did a lot of tests, they told me it was “just” tendonitis. But over time, I couldn’t move my hand, elbow, knees and I suffered more and more. I consulted a lot of doctors, conventional doctors, magnetizers, I must have seen about fifty people. For 8 months, we searched for what I had. I did lots of MRIs but we couldn’t find them. The doctors wondered if it was not the dropthere Lyme diseasea fibromyalgia… I finally saw a rheumatologist who made me pass new analyzes and sent me to a professor of internal medicine at the University Hospital of Reims. He immediately thought it was lupus.
Have you ever heard of lupus? How did you receive this diagnosis?
I had never heard of lupus. The first time when the doctor explains to you what it is, it’s quite vague, we do not understand well.
“I got fired”
At first I was in the denial, I continued to live normally, I was in pain but I did not want to accept the disease. For a long time I hid it because I was ashamed, I didn’t want to talk about it. When I couldn’t walk at all, I isolated myself. I refused going out, parties. I no longer had a job because I got laid off, I had nothing to tell, I spent my days on my sofa taking painkillers. I was isolated and withdrawn into myself.
Have you started treatment? Has your condition improved?
As soon as the diagnosis was made, I started treatment but it was a succession of failures. Even today, my disease is not stabilized. I took some Plaquenil®, the cortisoneof Methotrexate. The first two years, I was bedridden half the time, I couldn’t leave my house. There were days I couldn’t get up, drive ; others where it was a little better. I’ve had a lot of sick leave, temporary at first then continuous, for two years. This is where I lost my job. Today, I am a freelance consultant, part-time. A full-time work is not at all possible.
How does your illness manifest?
The disease can affect several organs, in me the lupus is mostly articular. I can have severe arm pain, for example, and not being able to move it anymore. Disease evolves by spurts. You can be disabled one day and be “very” well the next day.
“We must avoid stress, excesses, the negative, sort it out”
Do you have any ways to prevent these flare-ups?
It’s a bit utopian because we should live in a carefree world since stress aggravates the disease. Having a stressful job is thus prohibited, I know that I can never have a job with a career again. Flares can also be triggered by loss of someone, exposure to the sun and excesses. After the Christmas holidays, because of the excesses, I could no longer move. It is necessary to be in a calm environment and to have a healthy lifestyle.
The disease isolated you, how did you recover?
I have done violence to myself. I started writing, I published my first novel. And then I was offered a pet, a pig. This dwarf pig shared my suffering for years. The impact of an animal that is with you all the time is incredible.. When I wasn’t well, he was there, I didn’t feel alone. And then the animal is right there, he does not ask you for anything. Otherwise, I would have liked to be offered see a psychologist but the doctor I was seeing at the time didn’t tell me about it and I didn’t dare ask him because I was ashamed.
“I think I don’t prefer to know how my disease can evolve”
Have the doctors told you about the causes of your lupus?
No. In conventional medicine, doctors are interested in treating symptoms. They are not interested in the cause of the disease. There is no cases of lupus in my family. The disease is triggered in relation to an emotional shock, that’s why I’m really for Chinese medicine or hypnosis because they can help resolve traumato feel better in addition to the treatment, which also reduces flare-ups.
Do you know how your disease will progress?
Not at all, doctors always say that every patient is different. We have no visibility on how it can turn out or evolve, which is very stressful. I don’t know if it can be good or bad. I went on the Internet, on forums, to inform me but it is very anxiety-provoking what one reads there. I think that in the end I prefer not to know.
Do you have a message or advice for people who suffer from lupus like you?
Buy yourself a pig (laughs). The message of hope is never give up, even when you feel alone, you always have to fight because there is always a solution. And then you have to find a life in which you feel good, evacuate the problems, the negative, sort. It is also important to find a caring doctor. When you have a flare-up, you can feel alone, depressed, you don’t necessarily know how to explain why you are not well. We take it upon ourselves, a lot, and we don’t want to bother our spouse every night with that. This is where the doctor is important because you can talk to him and he is someone from the outside. It’s important to don’t stay alone.
Thanks to Anne-Sophie Hennique for her testimony. Anne-Sophie is the author of the novel “On the fly” published in 2022 by Librinova editions. She is currently writing her second book, this time about her illness, lupus.