She says it herself. His illness earned him “a somewhat atypical life course”. Handicapping, the illness from which Stéfanie suffers cannot be seen. But he is there. Everywhere. All the time. At 41, this Niçoise is still learning to deal with obsessive compulsive disorder (ocd) which has conditioned her daily life since she was 7.
A constant fight that she chose to tell this Monday evening, at 10:55 p.m., on France 2, in a new issue of the show In Olivier’s eyes. And that she also wants to advance for all those who, like her, have to deal with it. The young woman has just launched an association, Toc to mefor the sick.
You explain that you have suffered from ocd since the age of 7. How did things materialize?
In fact, when we have ocds, we are predisposed. Research was done and a physiological problem was identified. We identified areas of the brain that were dysfunctional. It is not something that happens by chance. We can all have little ocds when we are children, but it passes. With us, it gets worse. My parents saw that there was something wrong and sent me to a doctor. I was lucky enough to be received at the time by a psychiatrist who knew about ocd, so we were able to put a name to the disease. What followed was more complicated. I did not have a really adapted therapeutic follow-up. And unfortunately, if we do not treat early, it settles permanently. We must talk about it, as soon as possible and act. There are treatments that exist.
What does obsessive compulsive disorder mean?
The anxiety is really very strong, generalized. There is a deficiency of serotonin, a substance that allows you to fight this anxiety a little bit and to regain the upper hand. With us, it becomes so unmanageable that we find countermeasures, techniques to be able to reduce it. Ocds are only for regaining control. A permanent control. And once you start getting into that, especially when you’re a kid, you firmly believe that’s the solution. I compare it to religion. If, someone who has been praying since he was a child, you tell him at 40 to stop praying, he will feel bad, completely lost. For us, stopping fakes is the same.
Would you talk to yourself about this disease as a handicap?
Completely. It can only be disabling. The brain is sick. Moreover, people who suffer from it are entitled to an allowance. It starts with not being able to go to high school, not being able to study. Me, I even had ocds with the writing. I repeated a year. I have always tried. But it was hard. And then there are physical ocds, which cause pain. In fact, it’s exhausting. And then, drug treatments also add fatigue.
What are the treatments ?
As far as I’m concerned, it’s a high-dose antidepressant that somewhat limits the effects of the disease. Medicines allow us to maintain ourselves at a livable level, to be able to take a step back. And we see it as soon as there are treatment interruptions. Me, I stopped for my pregnancy. It was a fall into depression and it is the combo that must absolutely be avoided.
Today, your son is 16 years old. Is family life easy when you suffer from ocd?
It’s a challenge. All the time. I always wanted to protect him as much as possible from that. I internalized my ocds a lot to preserve it, but it’s hard. Even in the life of a couple, there are times when things are very, very complicated. I was at least lucky to have succeeded in founding something that is solid and that also helps me to move forward. In people who are alone, the disease can progress and worsen towards depression. There are many things that can come into play in this disease.
Is a professional life possible?
We live with constant occs. For me, it starts as soon as I get up. I have rituals. And the more we are stressed and anxious, the more the tocs are accentuated. If, one morning, I find myself having to hurry, it will be catastrophic. I tried odd jobs. I always wanted to push myself. To the extreme. In the end, I pulled too much on the rope. Today, immediately, I couldn’t. I’m trying to get out of my house and it’s already a huge job. So, I try to do as many activities as possible at home. Why not, eventually, I would like to develop a business around the Web. I work on Internet sites, and in particular that of the association that I launched.
What does it consist of?
I have been with Aftoc, which was the first association in France, since 1994. I run a discussion group on Facebook, with around 2,000 people. With two other people, we wanted to go further to further destigmatize this disease, to talk about it as much as possible. People who suffer from it are often very sensitive with a developed artistic fiber. So the idea of Toc to me is also to help them get out of the disease a bit by trying to do things around that, culture, which will bring them well-being. History of not remaining confined to stories of psychiatrists and drug treatments. We hope that the association can work in collaboration with Aftoc. We already have several projects, including setting up a photo exhibition and making a documentary. I got into it all the way when I additionally developed contamination ocd [autour de la méningite, qui a touché des membres de son entourage]. I stayed locked up at home for about three years.
Was the Covid period very complicated for you?
Since childhood, my anxieties have been fixed on death. I live with it all the time, all the time. So when the Covid arrived, of course, I got scared. But it wasn’t really an inordinate fear. My husband being a school teacher, so in contact with children, I had to get used to the idea. And then another feeling took over. I was angry because I said to myself: “there, [avec les confinements], they are doing something that will cost some people dearly”. And we see it today with young people who have developed certain disorders.
It also led to a certain awareness around mental health…
The Covid has at least boosted that. We understood that anyone could suffer from depression or anxiety. It brought sanity back a bit to the topics to be covered. So yes, in a way, it was positive. It can get things going.