Lele Pons is opening up about her battle with mental illness, including Tourette syndrome, depression, ADHD, and severe obsessive-compulsive disorder that at times has left her unable to function.
The 23-year-old Venezuelan star, who has 16.4 million YouTube subscribers and 40.9 million Instagram followers, revealed her struggled with mental disorders for the first time on April 22 with a trailer for her new YouTube documentary, The Secret Life of LeLe Pons.
‘People who think that I have the perfect life: Know that I don’t have a perfect life,’ she said. ‘My deepest, darkest secret is that I have OCD and that I’ve had it for most of my life.’
Candid: Lele Pons is opening up about her battle with mental illness, including Tourette syndrome, depression, ADHD, and severe obsessive-compulsive disorder
Famous: The 23-year-old Venezuelan star has 16.4 million YouTube subscribers and 40.9 million Instagram followers
Real life: But, she recently revealed, she has been secretly battling neurological disorders for most of her life
While Lele named several neurological disorders she suffers from, the premiere episode of the show mostly focuses on her OCD, which she has been struggling with for over a decade.
Obsessive-compulsive disorder is an anxiety disorder characterizing by having unwanted obsessive thoughts, which lead a person to repeat certain behaviors (compulsions).
Obsessions defy logic and usually involve concerns about germs or contamination, a need for symmetry, ‘intrusive thoughts’ of a sexual nature, or fears about death or harm befalling themselves or loved ones.
This can lead the sufferer to commit repetitive behaviors to calm their thoughts. The rituals — like cleaning repeatedly or doing an action a set number of times — can become debilitating and take up much of the day, interfering with normal function.
‘My OCD is very, very powerful thoughts that make me do stuff that I don’t want to do,’ Lele said.
Scary: In one of the earliest manifestations of the disorder began when she was a child, Lele would feel a need to put a pillow over her head and go a full minute without breathing
Looking back: Her mother said that she first noticed something was wrong when she observed Lele’s need to touch three times
‘When I was little, it got to a point where I could not move from the car and I stayed an hour there, doing some rituals … and my dad had to carry me out of the car,’ she said
Stepping in: Her parents realized something was wrong and took her to get professional help
In one of the earliest manifestations of the disorder began when she was a child, Lele would feel a need to put a pillow over her head and go a full minute without breathing.
‘If I made it, I was gonna be happy,’ she explained.
‘When I was little, it got to a point where I could not move from the car and I stayed an hour there, doing some rituals and touching things. And my dad had to carry me out of the car,’ she recalled.
Her mother said that she first noticed something was wrong when she observed Lele’s need to touch three times.
‘I began to know that she had something wrong when she began to touch three times the door of my room, and I [asked] her, why you do that?’ recalled her mom. Lele told her it was one touch for her, one for her father, and one for her mother.
‘I just had to touch everything. Everything, everything,’ Lele said. ‘And if I didn’t touch everything, I thought my family was gonna die.’
She grew afraid to walk through doors and developed several other compulsions, like turning a faucet on and off three times.
‘My OCD is very, very powerful thoughts that make me do stuff that I don’t want to do,’ Lele said in the documentary
Opening up: She gives a surprising look at her struggles in her new docu-series
Diagnosis: Obsessive-compulsive disorder is an anxiety disorder characterizing by having unwanted obsessive thoughts, which lead a person to repeat certain behaviors (compulsions)
She had learning disabilities, too. Because she wouldn’t talk a lot, she would draw pictures to communicate with her parents. For example, a drawing of a girl eating pizza meant she wanted to eat pizza.
All of these difficulties disrupted her life, and Lele said she ‘barely had any friends’ beyond her family, and would mostly play with her cousins. She was ‘really lonely.’
Eventually, she started seeing Dr. Katia Moritz, a clinical psychologist.
‘When I first met Lele, she came in as an emergency situation,’ Dr. Mortiz said. ‘She couldn’t really function and they were struggling to get her to school, eat, sleep, do any of the basic activities that she needed to do.’
OCD sufferers benefit from medication and cognitive behavioral therapy, in which the patient learns to cope with negative thoughts and emotions in a more productive way.
One thing that helped Lele was joining Vine in high school.
‘Doing funny videos was a distraction to OCD, to what was going on,’ she said.
Serious: At her worst, Lele has been unable to function properly due to the disorder
How it works: Obsessions defy logic and usually involve concerns about contamination or germs, a need for symmetry, ‘intrusive thoughts’ of a sexual nature, or fears about death or harm befalling themselves or loved ones
In a video she shared, her therapist talks her through an episode as she sobs and clenches her body, overcome with emotion
Can’t help it: She insists that she needs to perform her compulsion one more time to make it three times total
Raw: She shared several candid looks at what it looks like when she is overcome and fighting a compulsion
She had initially joined the video-sharing app to make friends, and it soon helped her find them not just online but in school, where her classmates took notice.
Though her online presence has helped her in some ways, she still struggles with OCD today.
‘In times that I’m sad, in times that I’m going through stuff, OCD is there. It’s just really hard because there’s triggers, and in OCD if you are triggered to do something, you have to do it,’ she said.
‘When you have a condition that controls you most of the time, you wish you didn’t have that.’
Lele still needs to turn the faucet off three times after she takes a shower — a compulsion that’s shown on camera during the episode.
The cameras also capture a particularly rough moment with her therapist, in which she is seen sobbing while fighting off a compulsion.
Some help: Eventually, she started seeing Dr. Katia Moritz, a clinical psychologist, who appears in the documentary
Stilling doing it: One compulsion she still performs is turning off the faucet three times after showering
Fun: Lele first started on Vine as a distraction from her OCD and as a way to make friends
She tells Dr. Moritz that she needs to do the compulsive action one more time, because she has only done it twice and it needs to be three times. Dr. Moritz speaks to her calmly, holding her hand and reminding her that she doesn’t need to do it.
She walks her through relaxing her body, unclenching her hands and uncurling her toes in order to push through the moment.
Dr. Moritz explained that people suffering from OCD turn to compulsions to stop the bad feelings and thoughts creeping in their heads, because doing the ritual quiets it. But the job of therapy is to make the feeling pass without doing the ritual.
Lele also said that she gets help from medication, explaining: ‘If I didn’t take medication, I wouldn’t be where I am.’
Her father, Luis Pons, noted that Lele can do incredibly complicated things with no effort — but might be incapable of doing something as simple as writing a check or turning off a light, because the rituals get in the way.
‘All she has been trying to do all her life is to find a balance between the things that are expected in the world in which she lives and her mind. It’s a struggle that is 24 hours a day,’ he said.
Busy: She has had an incredible amount of success, but says it wouldn’t be possible if she wasn’t on medication
Surprise: She said that she has gone into treatment for a month at a time on several occasions and fans don’t notice she is gone because she has content saved up that can be posted
What is obsessive compulsive disorder?
Obsessive compulsive disorder, usually known as OCD, is a common mental health condition which makes people obsess over thoughts and develop behaviour they struggle to control.
It can affect anyone at any age but normally develops during young adulthood.
It can cause people to have repetitive unwanted or unpleasant thoughts.
People may also develop compulsive behaviour – a physical action or something mental – which they do over and over to try to relieve the obsessive thoughts.
The condition can be controlled and treatment usually involves psychological therapy or medication.
It is not known why OCD occurs but risk factors include a family history of the condition, certain differences in brain chemicals, or big life events like childbirth or bereavement.
People who are naturally tidy, methodical or anxious are also more likely to develop it.
Adding to her struggle, Lele is the subject of hatred and bullying on the internet, as many public figures and social media stars are.
‘People are making hating me cool,’ she says through tears. ‘Sometimes I block out, I just want to end it.’
She also finds herself comparing herself to other people all the time, and that has made the prospect of being vulnerable and talking about her mental illness especially scary
‘Am I scared to tell people? Yes. Am I scared of what they might say? But am I embarrassed? No.’
As the episode debuted on YouTube, Lele spoke to Entertainment Tonight about the sensitive subject matter, explaining that she chose to open up ‘now that I’m not ashamed and embarrassed about having OCD.’
‘When I was little I couldn’t move, I was stuck in one place. I couldn’t move and my dad had to carry me around places,’ she said. ‘There are things that you don’t want to do, but your brain and your thoughts are telling you to do them.
‘I do a lot of touching, a lot of checking, I touch things, everything.’ she went on. ‘I talk to someone but I repeat myself three times and they don’t notice. I touch something three times. Sometimes I even get nervous when I say [or] do something two times and I’m like, I need to go back…
‘Everything is so calculated, it’s insane. When it comes to thoughts, I have fear of, “If I don’t do this three times, something bad is going to happen.” And you really, really, truly believe it. It’s not normal, you know? Because I know for a fact that nothing bad’s going to happen, but the feeling is so there that you actually believe it, it’s just hard.”‘
She said that she has gone into treatment for a month at a time on several occasions and fans don’t even notice she is gone because she has content saved up that can be posted while she is away.