My illness took a very long time to be diagnosed. A little before I turned 30, one weekend, while chatting with a friend, I felt half of my face go numb. After a call to the emergency services who feared a stroke, I did a battery of tests that did not give anything. The hemiplegia disappeared as it had appeared. The next year, I was driving to my parents’ house, and suddenly I started to see double. I was almost there, so I managed to park. Back to the emergency room. We did a lot of tests: scanner, MRI, to try to find what I was suffering from, which did not give anything.
In 2014, while at work, I was reading a table of numbers and couldn’t see with my right eye. I went urgently to an ophthalmologist. He first noticed my lack of vision on the right side and said bluntly: “I studied neurology and for me it is a symptom of multiple sclerosis.” I collapsed in tears. The image that came back to me was the armchair, the fact of not being able to walk. I cried for 5 minutes, but then I felt some kind of relief. I felt that yes, I finally had the correct diagnosis. The emergency room neurologist confirmed that I did have this disease. I surprised her by answering: “Okay, what next?” “Tit for tat. For me, it was important not to mope, but to go straight to what I could put in place. She gave me a treatment which I stopped four months later in agreement with her: I felt worse with than without, because of the side effects.
Shortly after this announcement, I got into a relationship with the father of my child. At no point in my head did I consider that my illness should interfere with my desire for a child. For me, nobody knows what the future will hold: a healthy mother can be run over in the street, be in a wheelchair or die. With me, the desire for a child was stronger than anything. As soon as I got pregnant, following my numerous work stoppages, I was pressured at work to leave. I was fired and then attacked my employers at the Labor Court. During pregnancy, the symptoms of MS are often less present. I felt very tired and often had ants in my fingers. The delivery did not go well: I was induced and the epidural did not work. I suffered a long time before an emergency cesarean was decided. I was so high that I fell asleep and didn’t see my son until the next morning.
From the start, it was a wonderful love story. After five days, back home, I had to be operated on. I had a huge abscess on my scar. Nobody wanted to listen to me when I said I was in great pain. I spent a week in surgery, separated from my baby who could not be hospitalized with me. It’s one of my worst memories: in the middle of postpartum, I was crying, without moral support from the nurses. It was my mother who took care of my son because the dad refused, not feeling capable of it. When she was 4 months old, we broke up. I am raising him alone, helped by my mother, because the father has not seen him since.
The disease has kept me away from a lot of people, especially my old friends. It’s hard for others to understand this sometimes invisible disease: I feel tired, my knees and ankles are tight, I have severe migraines or vision loss. But I know how to listen to myself. If my child wants to play football and I don’t have the courage, I suggest playing cards. But most of the time, I try to do everything like other moms. I also joined a patient association (SEP Avenir association), it feels good to feel understood! A piece of advice that I would give to women who have a desire for children and who have multiple sclerosis: go for it! My son is my best remedy for my illness.