People With Dermatillomania Are Turning To TikTok To Spread Awareness – BuzzFeed News

For months, Jaylin Scott had picked at her armpits. She would dig at her skin any time of the day — even in her sleep — until it bled and burned. These episodes would make her scream and cry in pain, drained by the compulsion to level out her skin.

“In my mind I’m screaming at myself to stop picking, stop picking, but I just couldn’t,” Scott said. “I had to have someone physically pull my arm away.”

The dry heat where she worked as a lifeguard in Las Vegas was intense, but she couldn’t wear deodorant because picking made her skin raw, so she constantly worried about body odor, too.

“It felt really shameful,” Scott said. “I became disgusted with myself.”

Then she found videos on TikTok about people struggling with the same thing, which made her feel seen. That was the first time she’d heard about skin picking disorder, a mental illness related to obsessive compulsive disorder that involves repeatedly picking at skin on the body, resulting in emotional and physical damage.

About six months ago, a dermatologist finally diagnosed her with the condition and prescribed an ointment called triamcinolone acetonide. The medication healed the scabs that formed in her armpits, which helped Scott avoid the urge to pick at her skin, a feeling many with the condition experience due to emotional and physical factors.

Receiving a diagnosis helped her immensely; now Scott is in recovery and has joined the many people with the illness who have posted about their journey on TikTok.

“Beyond proud of myself,” Scott wrote in a TikTok caption in August 2021. “I’ve kept this a secret for a long time and i feel it’s time to share my journey so others don’t feel alone!”

Why people pick their skin

Skin picking disorder affects as many as 1 in 20 people and is a form of self-soothing to handle emotional distress. It was informally called dermatillomania (a term still commonly used) or compulsive skin picking until 2013, when it was classified as excoriation disorder by the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5).

Research on the disorder is in its “infancy,” but awareness around the illness has grown, especially in the past five years, according to Karen Pickett, a licensed psychotherapist in California who has researched the condition for 20 years.

The disorder goes far beyond popping pimples or removing dry skin. It can cause conspicuous lesions on the body. People with the disorder often miss out on normal life or suffer emotional distress because of the compulsion.

Pickett said that someone with the disorder can simultaneously want to stop and seek the satisfaction of checking the skin for areas to work at. The behavior sets off synapses that produce dopamine and endorphin hits in the brain.

“Skin pickers can talk about the ‘reward’ as a feeling of accomplishment or relief or a way to self-soothe,” Pickett said.

According to Lauren McKeaney, CEO and founder of the Chicago-based Picking Me Foundation, triggers depend on the person but can be anything from a stressful day to a comment about your appearance.

The primary kinds of skin picking are scanning, a process of unconsciously searching the skin for something to smooth out, or focused picking, honing in on a perceived imperfection for an extended period of time before “coming to” and realizing what damage has been done, McKeaney said. She likened skin picking to an unavoidable “signal” from the body about an emotional state; to find a solution to picking, it’s important to recognize the emotion behind the behavior, she said.

Based on research about closely related disorders, Pickett said that about 80% of people with skin picking disorders have other psychological conditions, such as depression, because of its emotional regulation component.

Lauren Brown, 26, said she thinks her family’s history of addiction and depression, and her own “addictive personality,” set her up to potentially have dermatillomania.

For her, skin picking was a normal habit exacerbated to dangerous levels by a change in her environment. Brown, who wrote a memoir about anxiety and skin picking called Hands, said the behavior gave her solace after she moved to a new city and felt lonely. After a while, she couldn’t resist looking at herself in the mirror for extended periods of time, picking at her skin, and savoring the reward of clearing perceived irregularities. It’s hard to explain to someone who doesn’t have the disorder, she said, but she felt a sense of “achievement.”

“You think, It’s just a habit and I can stop whenever I want,” Brown said, adding that skin picking can be motivated by a sense of wanting to improve skin or a desire to release a feeling. For her, she wanted to get away from negative feelings about her new life. After picking, the emotions would briefly go away, but then she’d be jolted back into reality.

“You go into this mindless state of almost enjoyment. … You all of a sudden wake up to realize time has passed — that can be a shocking moment,” she said.

“Skin picking can actually help a person soothe themselves through uncomfortable thoughts and feelings,” Pickett said, adding that skin picking is a common way for someone to deal with difficult emotions if they are already in recovery from another mental illness. One emotional regulator replaces another.

For McKeaney, it was a way to pacify herself any time she felt too anxious or excited. “It really developed into a repetitive ingrained behavior I used to regulate stimuli,” she said. The disorder affected many of her childhood experiences; she quit figure skating, a sport she loved, because the healing scabs on her legs made it difficult to pull her tights off. She couldn’t stay the night at a friend’s house out of fear she’d have a picking episode; her parents only allowed her to have black bedsheets because they masked the little blood marks she’d leave in her sleep.

A lot of what is known about skin picking disorder is based on research on the closely related trichotillomania, or hair pulling disorder, which is also a body-focused repetitive behavior, Pickett said. People may pull their hair or pick at their skin for similar emotional reasons, or even do both things, so scientists study the disorders closely.

One 2006 study concerning trichotillomania concluded that two mutations in the SLITRK1 gene were linked to hair-pulling disorder. Given the similarities of hair pulling and skin picking disorders, Pickett said it’s possible to assume that a genetic marker may cause skin picking disorder, too, although she said no research has pinpointed one yet.

Pickett said she works with parents with skin picking disorder who fear “giving” it to their children.

Simone Kolysh, 38, a sociologist based in Maryland, has noticed their 15-year-old son is scratching on his shoulders and arms, the same areas they do. They point it out to him and provide a fidget toy to replace the urge to pick, without trying to make a big deal about it.

“I’m a lot kinder to my kids than I am to myself,” said Kolysh, who has four children and said seeing their child picking at his skin has made them feel ashamed and blame themself for his behavior.

How the pandemic raised awareness of skin picking disorder

The pandemic was a pressure cooker for many people with skin picking disorder, Pickett, the psychotherapist, said. Some people with dermatillomania who spoke with BuzzFeed News said the pandemic exacerbated their anxiety and depression, leading them to double down on their behaviors in search of some form of relief. Lockdown meant there was also a reduced likelihood of other people seeing their skin.

McKeaney of the Picking Me Foundation said she began picking her skin when she was 5 years old. Her body is covered in scars from sores she created as a child “anywhere [her] hands could reach,” she told BuzzFeed News.

Now 35 and in recovery, McKeaney said the pandemic was triggering; suddenly the CDC was saying “Don’t touch your face,” something her parents used to say to stop her picking. But more time in front of the mirror also meant new opportunities for self-reflection, she said, and she has also noticed a major uptick during the pandemic of people seeking support from the organization.

As people were isolated and experienced uncertainty during the pandemic, interest in understanding these symptoms increased: Google Trends shows a growth in queries in the US for “dermatillomania” and “skin picking” after spring 2020.

Now an otherwise little-known community is speaking up: Advocacy organizations, bots, apps, TikTokers, and Instagram accounts are spreading awareness about the disorder, debunking myths, sharing personal experiences, and offering support and resources.

Aaron Jeanfrancois hasn’t picked the skin on his palms since June 27, 2020. The 18-year-old first-year student at Brooklyn College, who is autistic, started creating lesions on their hands around the age of 5 as a form of stimming, a term that refers to self-calming behaviors. He couldn’t stop, sometimes targeting the area for 30 minutes at a time. Embarrassed by the look of their palms, which became red and raw from the picking, Jeanfrancois avoided giving high fives or would position his hand so only the top was visible.

But in the first summer of the pandemic, Jeanfrancois decided to make a change. His mother had told him that when she was younger, she had picked her skin too, and her recovery motivated him to try to stop. By focusing on other actions such as meditating, playing video games, or exercising, Jeanfrancois has been able to fill the gap. They have since posted about his disorder on TikTok, sharing how he stopped picking and achieved significant recovery milestones.

Why it can often take years to get a diagnosis

For decades, medical professionals failed to find a solution for McKeaney or even diagnose her condition. Dermatologists and psychiatrists said she had eczema or psoriasis, not a mental illness.

McKeaney was finally able to identify her disorder in 2014 when an area she picked on her upper right thigh became infected. She was in severe pain and felt ashamed her disorder had progressed so much. Doctors had discussed with her the possibility of amputating her leg because the bacteria were resistant to several antibiotics, but then a young nurse in the room saw her skin and said, “It looks like dermatillomania.”

“Having a term for this disorder, I felt armed,” McKeaney said. “It felt so awesome to have something to share.”

Jennifer Hollander, a nurse practitioner at the Beverly Hills Center for Plastic & Laser Surgery, helps hundreds of patients nationally with cosmetic skin concerns and said people rarely know they have skin picking disorder when they come to her.

“I would say it’s underreported because there’s a lot of shame around it,” Hollander said, adding she’s seen an “uptick” in patients with skin picking disorder and is treating them “now more than ever.” But she focuses on having a conversation with patients about how common the condition is.

Hollander said it can be difficult to tell if a patient has skin picking disorder or another skin condition, such as acne, because picking creates “secondary” wounds on top of those caused by other conditions. Because medical research into the disorder is lacking, she said, she’s glad to be able to connect patients with support groups or share her expertise on social media.

Talking about the condition, both with their family and online, has helped a lot, said Kolysh. “Once I started posting pictures of it and just talking about it in general, I got a bit more of a handle on it,” they said. “I became more in control of the behavior because I brought it into my conscious sphere out of my subconscious.”

“Talking about it and sharing photos of my skin and not blurring it out or editing it helped normalize it,” they added.

Many of the people who are publicly sharing their experiences with skin picking disorder are white women like herself, said Pickett, the psychotherapist. One reason for this is that white women are more likely to seek out therapy in the US than other groups. Another is that while Black and other nonwhite groups may experience more emotional trauma than white people, there’s a gap in receiving a diagnosis or getting therapy, according to Mental Health America. (In 2018, over half of Black and African American adults with a serious mental illness did not receive treatment.)

Jeanfrancois, who is Black and bisexual, said he is inspired to spread awareness about skin picking disorder among people who are not white women. This is especially important, he said, because symptoms like bloody wounds show differently on nonwhite bodies.

Scott, who is Black, said the disorder resurfaced existing insecurities about her skin color. Before she started picking at her armpits, she said, she was already self-conscious about the area because of dark spots caused by shaving, something Black women experience due to higher melanin levels.

“White women are overrepresented in the research,” Pickett said. “Hopefully that will change with more awareness and acceptance.”

What it’s like to have skin picking disorder

Skin picking disorder is complex because it feels good in the moment, but shame and remorse often follow.

Scarlett, 20, an online personal coach in Northamptonshire, England, is in recovery from depression and an eating disorder but has struggled with skin picking since she was 12. Skin picking served as a way for her to avoid self-harm caused by depression or deal with emotions she had after eating.

Scarlett (who did not want her last name mentioned for privacy reasons) said people should avoid saying “stop picking your skin” or “your skin is looking better” to those with the disorder.

“[If] someone [mentions] anything to do with my skin … I end up just making it worse,” she said, adding that comments like these fail to address the root of the behavior, and sometimes compel her to focus even more on her face. “It’s just understanding that it’s difficult to not do it.”

Pickett added, “Shame is a huge part of skin picking disorder largely because of lack of information. It’s not their fault.”

“That’s the inner conflict — I want to skin pick and I want to stop,” Pickett said. When she treats people, she talks about the behavior, its “addictive quality,” the emotional regulation needed to calm her brain, how to stop, and finding other techniques for dealing with thoughts and feelings.

Pickett said it’s not clear to researchers how the brain is able to basically zone out, but self-reported data shows that it can be a form of the mind soothing itself.

She said that the disorder is a pendulum of reward and shame: “You feel bad about yourself, and it precipitates all these emotions, which you then deal with via the behavior. … Breaking that cycle can be quite difficult.”

Kim Mills, a 29-year-old creator who posts on TikTok and Instagram as Kim on Skin, bit her nails as a child, and after puberty that evolved into skin picking. The disorder was a “cage,” she said, and she got frustrated that she wasn’t growing out of it. She’d give herself goals — once she got a boyfriend or her first apartment, she would stop picking — but the end never came.

It was isolating. “I felt like people around me only knew a certain side of me,” Mills said. “I felt like friends and family didn’t really know me.”

Mills now hosts Dermatillo-Diaries: The BFRB Podcast, posts content about common misconceptions and triggers, and promotes products like Nudge, a wristband device for skin pickers that vibrates and lights up whenever someone raises their hands to their face or head. (Mills said the Nudge device has been out of stock since the start of the pandemic, but the company declined BuzzFeed News’ request for comment on when it plans to restock.)

How to manage skin picking and get help

There’s no single way a doctor may approach treating someone for skin picking disorder. Awareness of the condition is still growing, and the solution is different for every person. Some medical providers may prescribe an ointment like Scott received, while others may send a patient to a therapist for a mental health evaluation. McKeaney of the Picking Me Foundation said she creates information packets to send to physicians — who are often the first point of contact with someone with dermatillomania — and a directory of informed medical providers.

Hollander, the nurse practitioner, gives patients the foundation’s “fiddle packs,” which include tools to keep the hands busy and deter someone from touching their body. She said she can’t speak for the whole medical community but noted that her nursing background gives her a “holistic” approach to skin picking disorder that focuses on the emotional factors behind a skin problem; she also refers patients with skin picking disorder to a therapist for cognitive behavioral therapy, which provides people with ways to approach specific behaviors in the moment.

Many skin pickers feel like they’re the only people doing it. But the Picking Me Foundation has run a virtual support group since March 2020 that has grown from three attendees to about 40 per meeting. The foundation now has over 800 members, and its email list has doubled in size since the start of the pandemic.

Mills said she had trouble finding useful forums or treatments on her own when she started her recovery three years ago, prompting her to make social media content as Kim on Skin to help others feel seen and learn more about skin picking disorder herself. She started her recovery by tracking her triggers, writing down when she was picking, how long the episodes were, and how these might be connected to other events that day. There’s even an app she used for this purpose called SkinPick, which provides a self-monitoring tool and a four-week course to help people understand and reduce their skin picking.

After gathering this data, Mills noticed that job stresses were often behind her picking, so she pivoted from a career in finance to one in social media. She now has a full-time job but hopes to eventually focus full time on Kim on Skin.

Mills reiterated how important it is to not downplay someone’s skin picking as only a habit. “Then they’re back to square one,” she said, “feeling embarrassed and even more alone.”

Investing time in recovery is also not something that may come naturally to people with dermatillomania, Mills said.

“A large majority are struggling with providing self-care,” she said. “Because of that, a big investment into themselves, that’s really hard for people to justify.”

Self-managed treatment depends on the person and their triggers. For McKeaney, avoiding mirrors is important. She splashes water on the sink in her bathroom so she won’t bring her face close to the mirror. She also leaves the lights off, keeps the door open, puts a tape boundary on the floor, uses acrylic nails (which are less sharp on skin), and wears pimple patches to hide areas she would be tempted to pick.

Scarlett, the personal coach in England, manages her picking by going on walks, keeping a stress ball in the bathroom, and covering up mirrors with towels. She spoke out on TikTok about skin picking and connects via DMs with others who do it, which makes her feel less alone. She said her skin picking has become less intense with each little change. In July 2020, she decided to enter a bodybuilding competition; knowing the event was coming up served as a reminder to hold back from skin picking.

Pickett’s advice for anyone who encounters a friend or relative with skin picking disorder is to cite the definition, treatment options, and other resources from the TLC Foundation for Body-Focused Repetitive Behaviors, and then ask them if they’ve heard of the disorder and if they think it might be something they have. This avoids any sense of blame or shame, as if they’ve done something they should be embarrassed about.

“For anyone who is struggling, I ask them to be as gentle with themselves,” McKeaney said. “This disorder already tears us apart and doesn’t deserve another minute of our time.” ●

This story is part of our Body Week series. To read more, click here.