“With this video, I felt less alone in my journey”. Emma, 26, was 6 when she was diagnosed with attention deficit disorder with or without hyperactivity (ADHD). Last December, she posted on TikTok a video about ADHD symptoms in women, which has since peaked at nearly 850,000 views. “I wanted to make people understand what causes this disorder, because we are still often singled out for things for which we are not responsible. »
This video, which does not represent the tone of his TikTok channel, earned him many messages around the issue of diagnosis. “People need to identify themselves. I’ve also had a lot of comments like ‘if that’s it, everyone has ADHD’, because the symptoms can be stress-like. For me, it shows above all that we don’t talk about it enough! »
Problem, when we don’t talk about it enough, patients can wander for a long time. Like Chloé, followed by psychologists since childhood and whose diagnosis was only made in adulthood, after personal research. “I had to come across a traumatologist, with whom I first worked on the symptoms, so that ADHD and C-PTSD (complex post-traumatic stress disorder) were finally recognized”. In question, the “psychophobic” side of French society: “It is seen as a weakness to need a psychiatrist follow-up”. Yet the official recognition of the disorder opens the possibility of adequate medical care, including medication.
“We feel alone to live this kind of experience”
Often, the late diagnosis sheds light on a sometimes traumatic life experience. “It’s very complicated, especially during school, when everyone agrees that you are a weirdo, but no one knows why, not even you! “. Chloe fumbles, reads “The Body Language Handbook” or “Getting Appreciated in 3 Minutes” without understanding how other people work.
“Since then, I have developed very good social skills, but I have learned to ‘mask’, to hide my particularities in order to be accepted. » Chloé is a tattoo artist and share their work on the networks. At the mention of his troubles, the remarks were not all positive. “I was told I was doing this to gain attention. But, I just wanted to share my experience to help other people. It was the need to form a community that motivated me, because often you feel alone in living this kind of experience. »
In France, obtaining official diagnoses can be like an obstacle course. For psychologist specializing in digital practices, Vanessa Lalo, the success of TikTok videos responds to a “state bankruptcy” on the management of mental health. “There is a lack of prevention, detection of weak signals, a cruel lack of access to care. There are not enough professionals, nor places of consultation. »
In the public sector, which allows coverage by social security, there are often long waiting lists before obtaining an appointment in a hospital, a CMP (medico-psychological centre) or a CRA (Centre autism resources). Many patients, discouraged by the delays, opt for liberal medicine. Just one diagnosis of ADHD can cost several hundred dollars. On the networks, the communities exchange the names of specialized practitioners.
“I thought talking about autism and ADHD could help other people”
As a child, Lev, too, fell under the diagnostic radar. It took a traumatic professional experience to finally understand, at 26, why she felt so different. “I started working as a trainee teacher after my studies. But I was doing very badly and I could see that it was beyond the difficulties of the job that my colleagues were also experiencing. Intolerant to noise, the days at college are unbearable for her. She ends up consulting a psychologist and resigns from the National Education. He was eventually diagnosed with ASD (autism spectrum disorder) combined with ADHD and dyspraxia, a motor disorder.
What motivated her to talk about this experience on social networks is that she had, like all those who are not spotted early, to do a long personal investigative work. At the time she started, Lev was coming out of a depression, which followed his professional difficulties. She first wanted to “talk about mental health” and share tips that have helped her get better. “I thought that talking about autism and ADHD could help other people. »
Its community, founded around well-being content, reacted positively, “even if there are still a lot of prejudices”. Lev uses humor to talk about health. In her most viral video, which reached one million views, she dances on a pole dance bar, with the caption “when you want to break the clichés about autism”. But this process is not always understood: “I notice that it is difficult to make people hear that you can be autistic and happy”, but she hopes to “plant seeds” for a better acceptance of society around these questions. .
On TikTok, “I have the impression of doing for others what I would have liked to be done for me”
TikTok, unlike expensive diagnostics, is free. “A diagnosis saves lives, and it’s not normal that it’s reserved for people who can afford it,” points out Theo, angrily. Diagnosed with ADHD at the age of 28, Théo has been psychologically monitored since the age of 7. “I’ve spent my whole life looking for answers, I’ve seen lots of shrinks, and none have ever told me about ADHD! “. It is finally his companion, neuroscientist, who will put him on the track.
Since then, his TikTok account has been used to share information about ADHD: “I feel like I am doing for others what I would have liked to be done for me”. On his videos, we talk about the diagnosis, the official criteria, we share resources… So much data that can then allow his subscribers to ask themselves the right questions. . For Théo, knowledge of the subject can allow “to fight intelligently, against a medical body that is not always trained on these issues”.
The release of the word of the people concerned lifts the taboo around mental health for Vanessa Lalo who has seen this movement become generalized since the pandemic, demonizing the subject while “psychiatry has always terrified people”. This is the case of Oscar, whose click took place during the first confinement. Before becoming @1simpleconseil on Instagram, he has long been “in denial” about his disorder, even though he was diagnosed since childhood with ADHD and HPI (high intellectual potential). During confinement, he began to be passionate about personal development and self-knowledge.
“I never imagined, at 11 or 12, talking so openly about my disorder and giving advice to others about it.” Oscar, who was ashamed of his difference during his childhood, advocates acceptance: “We still too often wait the drop too much to get help. Expressing himself on the networks is also a way for him to take care of his mental health: “I touch people, and it makes me feel good to talk about it”.
Oscar benefits from a psychological follow-up and if he is now at ease to approach these subjects, he recalls that social networks “are a showcase”, which do not show the entirety of a situation. Neither are sufficient for a medical diagnosis. Online tests can at best give a clue. Vanessa Lalo, for whom the popularization of fields hitherto reserved for specialists can ultimately allow better access to care, stresses the importance of “keeping a critical mind”. And then follow this process with the pros.