Dermatillomania people use tiktok to raise awareness of their condition

Those who suffer from dermatillomania are constantly scratching sores into their own bodies. What also helps those affected: to talk openly about the illness.

For months, Jaylin Scott had been picking at her armpits. She dug into her skin at all hours of the day – even while sleeping – until it bled and burned. These episodes left them screaming and crying in pain, worn out by the compulsion to make their skin "smooth". "In my head, I was screaming at myself to stop scratching and plucking, but I just couldn't," said Scott. "I needed someone to pull away my arm."

The dry heat in which she worked as a lifeguard in Las Vegas was very strenuous, but she could not wear deodorant because her skin became rough from the picking. This is why she was constantly worried about her body odor. "It was really embarrassing," Scott said. "I was disgusted with myself."

Dermatillomania on TikTok: Jaylin is not alone in suffering from the disease

Then she found videos on TikTok about people struggling with the same problem, which made her feel seen. This was the first time she heard of "skin picking disorder". This is a mental illness related to obsessive-compulsive disorder in which people repeatedly pick at the skin of their bodies, resulting in emotional and physical damage. About six months ago, a:e dermatolog:in finally made the diagnosis. Prescribed her an ointment called triamcinolone acetonide. The medication healed the scabs that had formed in her armpits and helped Scott avoid the urge to pick at her skin, a feeling many sufferers experience due to emotional and physical factors.

The diagnosis helped her immensely. Now Scott is on the road to recovery and has joined the many sufferers who share their journey on TikTok. "I am very proud of myself," Scott wrote in a TikTok message in August 2021. "I kept this a secret for a long time. Now I think it's time to share my journey so others don't feel alone!"

Dermatillomania: why people pick at their skin

Up to 1 in 20 people suffer from the plucking disorder, which is a form of self-soothing to cope with emotional stress, according to the International OCD Foundation. Until 2013, the condition was informally referred to as dermatillomania (a term still in common use) or compulsive skin picking. Then it was classified as an excoriation disorder in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-5).

Research on the disorder is still in its "infancy," but awareness of the disease has grown, especially in the past five years, Karen Pickett said. She is a licensed psychotherapist in California who has been working with this condition for 20 years. The condition goes far beyond lancing pimples or removing dry skin. It can lead to noticeable lesions on the body. People with the disorder often miss out on their normal lives or suffer from compulsion.

Pickett said sufferers could simultaneously desire to stop and still find satisfaction in examining the skin for areas to be worked on. The behavior sets off synapses that release dopamine and endorphins in the brain. "Skin pickers talk about the 'reward' as a sense of accomplishment or relief or a way to self-soothe," Pickett says.

There are many triggers for the mental disorder

According to Lauren McKeaney, CEO and founder of Chicago-based Picking Me Foundation, triggers depend on the individual, but can range from a stressful day to a comment about one's appearance.

The main types of "skin picking" are scanning, a process of unconsciously searching the skin for something to smooth out, or focused picking, where you concentrate on a perceived imperfection for an extended period of time before "coming around" and realizing what damage you've done, McKeaney said. She compares "picking" to an inevitable "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 told BuzzFeed News US.

Based on research on closely related disorders, Pickett said about 80 percent of people who suffer from "skin picking" also have other mental disorders such as depression because of the emotional regulation component. Lauren Brown, 26, said she believes the history of addiction and depression in her family and her own "addictive personality" predisposed her to dermatillomania. At what age are people first depressed? New study yields important findings.

Dermatillomania – a perceived sense of accomplishment

For Lauren, picking at her skin was a normal habit that was made dangerously worse by a change in her environment. Brown, who wrote a memoir about anxiety and skin picking called "Hands," said the behavior gave her comfort 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 eliminating perceived imperfections. It's hard to explain to someone who doesn't have the disorder, she said, but she had a sense of "accomplishment".

"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 desire to beautify the skin or a desire to get rid of a feeling. She wanted to rid herself of negative feelings in her new life. After picking, the emotion would disappear for a short time, but then it would snap back to reality.'You get into this mindless state where you almost enjoy yourself'. Suddenly you wake up and realize time has passed – it can be a shocking moment," she said. Here are the accounts of 5 young people who suffer from "Dissociative Disorder." They too, in moments of illness, "feel the world is not real".

Her parents allowed her only black bedding because it didn't leave blood stains on it

"Skin picking can actually help a person calm themselves through unpleasant thoughts and feelings," Pickett, a psychologist, said, adding that skin picking is a common way for someone to deal with difficult emotions when they've already recovered from another mental illness. One emotional regulator replaces the other.

Dermatillomania people use tiktok to raise awareness of their disorder

Left: Lauren Brown; right: Jaylin Scott © Courtesy of Lauren Brown and Jaylin Scott

For McKeaney, it was a way to calm herself down when she felt too anxious or upset. "It really developed into a repetitive, ingrained behavior that I could use to regulate stimuli," she said. The disorder impacted many of her childhood experiences. She gave up figure skating, a sport she loved, because the healing scabs on her legs made it difficult to take off her tights. She couldn't stay overnight at a friend's house for fear of having a pick attack. Her parents only allowed her to wear black bedding because it hid the small blood stains she left behind when she slept.

Trichotillomania is a similar condition

Much 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, recurring behavior, Pickett said. Humans may pull their hair or pluck their skin for similar emotional reasons, or even do both, so scientists:inside are closely studying the two disorders. Another disorder with a fancy name is alopecia. Here, 5 people with alopecia tell us how they feel about Chris Rock's joke at the Oscars.

According to WebMD, a 2006 study on trichotillomania concluded that two mutations in the SLITRK1 gene were associated with the hair-pulling disorder. Given the similarities between hair-pulling and skin-pulling disorders, Pickett said it's safe to ame that skin-pulling disorder is also caused by a genetic marker, even though researchers have yet to find one.

Pickett said she works with parents who are afraid of passing on the disorder to their children. Simone Kolysh, 38, a sociologist from Maryland, had noticed that her 15-year-old son was scratching his shoulders and arms, the same places she did. She pointed it out and offered him a fidget toy to replace the urge to scratch without making a big deal out of it. "I'm much nicer to my kids than I am to myself," said Kolysh, who has four children and is embarrassed when she sees her child picking at his skin. She blames herself for his behavior.

How the pandemic raised awareness of dermatillomania

The pandemic has been like a prere cooker for many people who suffer from skin picking, psychotherapist Pickett said. Some people with dermatillomania who spoke to BuzzFeed News US said the pandemic exacerbated their anxiety and depression, which led them to increase their behavior in search of some form of relief. Lockdown also eventually meant other people didn't see their skin as often.

McKeaney, of the Picking Me Foundation, said she began picking her skin at age five. Her body is littered with scars from wounds she sustained as a child "wherever her hands went," she told BuzzFeed News US. Today she is 35 years old. Is in the process of recovery. The pandemic, she said, was a trigger; suddenly the CDC was saying "don't touch your face," something her parents used to say to keep her from picking it. But more time in front of the mirror also meant more self-reflection, and she noted that during the pandemic, the number of people reaching out to the organization increased sharply.

As people were isolated and experienced uncertainty during the pandemic, interest in understanding these symptoms increased: Google Trends shows an increase in searches in the U.S. for "dermatillomania" and "skin picking" after spring 2020. Now an otherwise little-known community is speaking out: organizations, bots, apps, TikTokers and Instagram accounts are spreading awareness of the disease, dispelling myths, sharing personal experiences and offering support and resources.

Aaron avoided giving a high five

Aaron Jeanfrancois has had dermatillomania since the age of 27. June 2020 no longer scratched in the skin of his palms. The 18-year-old freshman at Brooklyn College, who is autistic, began creating lesions on his hands at age five as a form of "tuning," a term referring to self-soothing behaviors. He couldn't stop, sometimes spending 30 minutes at a time on one spot. Jeanfrancois was ashamed of the appearance of his palms, which became red and rough from plucking, and avoided giving a "high five" or held his hand so that only the tip was visible.

Dermatillomania people use tiktok to raise awareness of their disorder

Aaron Jeanfrancois shared his recovery from "skin picking" on TikTok to raise awareness of the condition. © Courtesy of Aaron Jeanfrancois.

But in the first summer of the pandemic, Jeanfrancois decided to make a change. His mother had told him that she also picked her skin as a child, and her recovery motivated him to stop doing so. By focusing on other activities such as meditation, video games or sports, Jeanfrancois was able to fill the void. Since then, he has posted on TikTok about his illness and shared how he stopped picking and reached important milestones in his recovery (see below).

Dermatillomania: Why it often takes years to get a diagnosis

For decades, medical professionals failed to find a solution for McKeaney or even diagnose her condition. Dermatologist:inside and psychiatrist:inside said she had eczema or psoriasis, but not a mental illness. McKeaney recognized her condition in 2014 when a spot she picked on her right thigh became inflamed.

She was in a lot of pain and ashamed that her disease was so advanced. Doctors had even talked to her about the possibility of amputating her leg because the bacteria were resistant to several antibiotics. When a young nurse in the room saw her skin, she said, "That looks like dermatillomania." "I felt armed when I finally had a name for this disorder," McKeaney said. "It was a great feeling to have something to share."

Dermatillomania people use tiktok to raise awareness about their condition

Lauren McKeaney runs an organization in Chicago that advocates for "skin picking". © Courtesy of Lauren McKeaney.

"Skin Picking Disorder": there is a lot of shame associated with this condition

Jennifer Hollander, a nurse practitioner at the Beverly Hills Center for Plastic& Laser Surgery, helps hundreds of patients nationwide with cosmetic skin problems and says people rarely know they have "skin picking disorder" when they come to see her. "I would say it's underreported because there's a lot of shame," Hollander said, adding that she's seen an "uptick" in patients with "skin picking disorder" and is treating them "now more than ever". But she focuses on talking to patients about how common the disease is.

According to Hollander, it can be difficult to determine whether a patient has picking disorder or another skin condition, such as acne, because picking causes "secondary" sores that are in addition to those caused by other conditions. Because there is a lack of medical research on the condition, she is happy to connect patient:ing with support groups or share her expertise through social media. There is also often a lack of education about physical illnesses, such as Parkinson's disease. Young people have the disease, too – here's what they say about their experiences with Parkinson's: "I couldn't hold my pen anymore".

Talking about the disease, both with family and online, has helped her a lot, Kolysh said. Family often plays an important role in illnesses, including Bruce Willis' aphasia diagnosis, which recently ended his career. "When I started posting pictures of it and talking about it in general, I got a better handle on it," she said. "I had better control of the behavior because I brought it out of my subconscious and into my conscious mind." "Talking about it and showing photos of my skin without pixelating or editing it has helped normalize it," they added.

Rare diagnosis among blacks and other non-white groups

According to Pickett, a psychotherapist, many of the people who publicly report their experiences with "skin picking disorder" are white women like herself. One reason is that white women in the U.S. are more likely to seek treatment than other groups, study shows. Another reason is that while blacks and other non-white groups experience more emotional trauma than whites, there is a gap when it comes to getting a diagnosis or getting treatment, according to Mental Health America. (In 2018, more than half of black and African American adults with a serious mental illness did not receive treatment.)

Jeanfrancois, who is black and bisexual, said he was inspired to spread awareness of "skin picking disorder" among people who are not white women. This is especially important, she said, because symptoms like bloody sores look different on non-white bodies.

Scott, who is black, said the disorder rekindled existing insecurities about her skin color. Before she started plucking at her armpits, she was already self-conscious about the dark spots that result from shaving, which is the case for black women because of higher levels of melanin. "White women are overrepresented in the research," Pickett said. "Hopefully, with more awareness and acceptance, this will change".

What it feels like to suffer from dermatillomania

"Skin picking is a complex problem because it feels good in the moment, but shame and remorse often follow. Scarlett, 20, an online personal coach in Northamptonshire, England, has recovered from depression and an eating disorder, but has struggled with "skin picking" since the age of 12. It served as a way for her to avoid self-harm due to depression, or to deal with her feelings after eating.

Scarlett (who declined to give her last name for privacy reasons) said people should avoid saying to sufferers, "Stop skin picking" or "Your skin looks better". "When someone says anything that has to do with my skin, it just makes it worse," she said, adding that such comments don't address the cause of the behavior and sometimes force her to focus even more on her face. "It's just about understanding that it's hard not to".

Inner conflict

Pickett added, "Shame is a big part of skin picking disorder, largely because of a lack of information. It's not her fault." "That's the inner conflict – I want to pick and I want to stop," Pickett said. When she treats people, she talks about the behavior, ndesse "addictive quality," the emotional regulation needed to calm their brain, how to stop and find other techniques for dealing with thoughts and feelings.

Pickett said it was not clear to researchers:in how the brain is able to basically shut down, but self-reported data showed that this can be a form of self-soothing of the mind. She said the disorder is an oscillation between reward and shame: "You feel bad, and that triggers all these emotions that you then deal with the behavior with. Breaking that cycle can be quite difficult."

Personal experience

Kim Mills, a 29-year-old creative who posts on TikTok and Instagram as Kim on Skin, bit her nails as a child, and after puberty it evolved into "skin picking". The disorder was a "cage," she said, and she was frustrated that she wasn't growing out of it. She kept setting goals – once she had a boyfriend or her first apartment, she would stop scratching – but the end never came.

It was isolating. "I felt like the people around me only knew a certain side of me," Mills said. 'I felt like friends and family didn't really know me'."It is important to speak openly about one's own illnesses. That's exactly what Jada Pinkett Smith and 10 other celebrities are doing by talking openly about their hair loss disease, alopecia.

Mills now hosts Dermatillo Diaries: the BFRB podcast, posts content about common misconceptions and triggers, and promotes products like Nudge, a skin picker bracelet that vibrates and lights up when someone raises their hands to their face or head. (Mills said the Nudge device has been out of stock since the pandemic began, but the company declined a request from BuzzFeed News US about when it planned to restock.).

Cognitive behavioral therapy, which teaches sufferers ways to address certain behaviors.

Many skin pickers feel they are the only ones who feel this way. But the Picking Me Foundation has been running a virtual support group since March 2020, which has grown from three participants to about 40 per meeting. The foundation now has more than 800 members, and its email list has doubled since the pandemic began.

There is even an app called "SkinPick"

Mills said she herself had trouble finding useful forums or treatments when she began her recovery three years ago, which led her to create social media content like "Kim on Skin" to help others feel seen and learn more about skin picking disorder herself. She began her recovery by tracking her triggers, writing down when she picked, how long the episodes lasted and how they might relate to other events of the day. There is even an app called SkinPick that she used for this purpose. She offers a self-observation tool and a four-week course to help people understand and reduce their picking.

After collecting this data, Mills found that job stress was often the reason she was picking, so she switched from a career in finance to one in social media. She now has a full-time job, but hopes to eventually focus entirely on "Kim on Skin".

Mills reiterated the importance of not dismissing a person's skin picking as just a habit. "Then they are back to square one," she said, "they are embarrassed and feel even more alone". Investing time in recovery doesn't come naturally to people with dermatillomania, Mills says. "The vast majority have trouble supporting themselves," she said. "That's why a big investment in yourself is really hard for people to justify."

Different options for treatment

Self-directed 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 can't get her face near the mirror. She also keeps the lights off, leaves the door open, marks a boundary on the floor with tape, uses acrylic nails (which are less sharp on the skin), and wears pimple patches to hide the places she'd be tempted to pick at.

Scarlett, the personal trainer from England, has her picking under control by going for walks, keeping a stress ball in the bathroom and covering mirrors with towels. On TikTok, she talked about "skin picking" and sharing stories about DMs with other sufferers, making her feel less alone. She says her "skin picking" has become less intense with each small change. In July 2020, she decided to enter a bodybuilding competition; knowing the event was coming up reminded her to restrain herself from "skin picking".

"I urge everyone who is struggling with this to be equally gentle with themselves"

Pickett advises anyone who meets a friend or relative with "skin picking disorder" to refer to the TLC Foundation's definition, treatment options and other resources, and then ask them if they have heard of the disorder and if they think it might be something they have. This avoids any sense of guilt or shame, as if they have done something to be ashamed of. "I ask everyone who struggles with this to be as gentle with themselves," McKeaney said. "This disease is already tearing us apart and doesn't deserve another minute of our time."

More about health? Since masks are no longer compulsory, high-risk groups are at high risk. Here we talk to a patient who finds: Your Freedom Day is an absolute horror for us.

Authored by Nicole Fallert. The article appeared on 21. March 2022 on buzzfeednews.com. Translated from English by Mine Hacibekiroglu.

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