Joseph scrolls through Twitter, his feed refreshing over and over again, but he doesn’t read the words. He puts on television shows like “Breaking Bad,” but he doesn’t watch them. Instead, he fixates on the next cosmetic procedure he’ll undertake. Maybe it’ll be his chin or his eyes or his nose; the location is less important than the possibility of him obtaining some relief and, as he says, “undoing the things that make me feel ugly and different from other people.”
This routine has been Joseph’s mainstay for years. In fact, Joseph, now 44, started to feel consumed by relentless thoughts about his appearance when he was in high school and developed a severe case of acne.
“I spend a lot of time just trying to zone out by staring at my phone or watching things online,” Joseph said. “The thoughts, the obsessions, really are intense, so I’ve got to find something to zone out pretty strongly.”
Joseph is one of millions of people worldwide who have body dysmorphic disorder, a mental health condition defined by a preoccupation with perceived physical flaws that disrupts daily living.
Before the coronavirus pandemic, many people with BDD developed ways to cope with the disorder, including attending in-person therapy sessions, going to the gym, hiding the mirrors in their homes and working. When they couldn’t effectively distract themselves from the intrusive thoughts about their appearance, some engaged in exposure therapy, a form of treatment that helps them confront the fear and anxiety that others will respond negatively to their appearance. For some people with BDD, this can include going out without makeup or wearing clothing that reveals a part of their body that may be the focus of their emotional distress.
Although social distancing has proven to be an effective way to curtail the coronavirus spread, for some with BDD, the isolation is triggering worsening symptoms, according to experts and people with the disorder.
Dr. Katharine Phillips — a professor of psychiatry at Weill Cornell Medicine, attending psychiatrist at New York-Presbyterian Hospital and author of the book “The Broken Mirror: Understanding and Treating Body Dysmorphic Disorder” — said she’s observed intensified symptoms among her patients with the disorder in the last few months. She also warned that “for those who don’t currently have BDD but are at risk of developing it, the stress of the current situation might trigger the onset of full-fledged BDD.”
Stuck at home with mirrors and social media — two common triggers for people with BDD — and cut off from some of their usual outlets, many are struggling more than usual, she said. Even a Zoom or video call, where participants see a thumbnail of their own face, can inspire an unhealthy thought spiral for people with BDD. On top of that, the financial recession may also be making it more difficult for people to access the help they need.
But there’s a major cause for hope: As people grapple with BDD, some have started their own transatlantic support groups and are learning to lean on others living with the same condition, whereas before they may have simply dealt with it silently out of reluctance to disclose their symptoms.
Most of the people with BDD quoted in this article asked not to be identified by their full names to maintain their privacy.
What is BDD?
It’s not immediately evident that Joseph, a 44-year-old white man living in the Midwest, would have anything in common with Amal, a 22-year-old Pakistani girl residing in the U.K., but both highlight the reach of BDD, a condition that transcends borders, race, ethnicity, age and gender.
The latest estimates from the International OCD Foundation suggest that 40 percent of people with BDD are men and 60 percent are women. The estimates, written by Phillips, also say BDD is “significantly underdiagnosed.” Available data suggests it’s more common than schizophrenia and anorexia nervosa and likely as frequent, if not more frequent, than obsessive-compulsive disorder. About 1 in 50 people are thought to have BDD, which was first described in the Diagnostic and Statistical Manual of Mental Disorders in the 1980s.
Amal and Joseph’s shared diagnosis also foregrounds what is perhaps one of the most misunderstood aspects of BDD: It is a spectrum disorder, meaning that although people who experience it can share feelings of shame, self-loathing and emotional distress over nonexistent or minimal defects, their BDD can manifest to different degrees. Some may be dealing with BDD so severe that they are unable to integrate into society to the extent they’d like. Others are relatively high-functioning, despite living with overwhelming repetitive thoughts and behaviors, and are able to sustain relationships and employment, according to experts.
When the coronavirus began spreading and lockdowns were underway, some people with BDD weren’t fully thrown by quarantine; they had already isolated themselves during various periods of their lives because they didn’t want to be negatively judged for their appearance.
“I wasn’t really going out much anyway. It’s strange in some ways because it’s not much different than the way I normally live,” Joseph, who is unable to work because of his BDD, said of socially distancing. “I don’t go out to eat ever. I don’t go to bars. I don’t go to the gym, so those places that have shut down weren’t really affecting me at all.”
Amal, a psychology student training to become a BDD therapist, was also dealing with relatively disruptive BDD before the pandemic.
While working at a hospital, she would frequently rush to the bathroom to check her makeup and make sure her nose was perfectly contoured. Although she had undergone rhinoplasty in the past, her nose was still a major source of insecurity and fixation for her. She wondered whether people thought it was too big for her face or if it was the only feature others could focus on when they looked at her — even though many have told her that her nose looked fine. When she went home for the day, she’d take selfies in an attempt to understand how people viewed her.
Despite the fact that both Joseph and Amal had isolated themselves on occasion before the pandemic, they found that the more time they spent inside during lockdowns, the more they felt trapped by their thoughts.
“I had less people to talk to and there was nothing else for me to concentrate on,” Amal said. “I was on social media a lot more, mostly Instagram, comparing myself to other girls and taking screenshots of pages that show what people look like after they’ve gotten various surgeries or fillers, and I thought to myself, ‘I need that.’”
She said her family tends to view her BDD as an issue of “vanity,” another common and damaging misconception that gives people license to write the disorder off as a superficial condition.
But that assumption couldn’t be farther from the truth, said Phillips, who in a 2007 study found that 80 percent of individuals with the disorder experience suicide ideation.BDD is also “associated with a very high suicide attempt rate and completed suicide rate,” she said, although data on both counts is limited.
“We think one of the reasons for BDD is that patients have some aberrations in visual processing,” Phillips said. “When they look at their face, for example, they may notice that little scar at the bottom of their nose that no one else would ever see. Their brains pick up the detail excessively and they have trouble contextualizing it and realizing it’s a tiny detail in the context of their entire face and body.”
The thoughts were so painful and the feelings of isolation so strong that both Amal and Joseph, who do not know each other, joined the Body Dysmorphic Disorder Foundation, a United Kingdom-based organization dedicated to fostering community and providing resources for people with BDD, along with spreading awareness about the condition. Since the pandemic began, the group has moved its operations online, hosting virtual mindfulness sessions and other workshops, group therapy and meet-and-greets for its members.
“In a way, me joining an English group to get support through the BDD Foundation when I live in the U.S. emphasizes the isolation caused by BDD and how difficult it can be to get access to resources,” Joseph said. He added that he was once misdiagnosed with gender dysphoria, a medical disorder in which a person’s physical or assigned gender is contrary to their gender identity, by a psychologist who had never heard of BDD before.
Kitty Wallace, head of operations at the BDD Foundation, said she’s observed a marked increase in the number of people joining the organization since March.
“There’s still this huge lack of awareness and knowledge. So many people are stuck in silence, and that’s what we want to change,” Wallace said. “I have had more people than usual dealing with suicidal thoughts reaching out to the foundation, and that’s a huge concern. We want them to know we do care, there is help and that it can get better. We hear you, we know it’s difficult. Please reach out for more support and help.”
Coping with BDD
Ben used to stand in front of the mirror, a scissor and comb to his head. If he could just snip off the perfect amount of hair, he’d “blend in,” he thought, which is all he ever wanted. The 38-year-old began giving himself “in-between haircuts” as a teenager and at one point, he was giving himself 10 microhaircuts a day.
For so long, this “mirror dance” was a part of his life, leading him to get chin augmentation surgery at 20 years old and causing him to feel depression and anxiety. He began what he called his “healing journey” in 2012, which included stints in sober living (he did not rely on alcohol or other substances to cope with BDD, but thought the structure of the setting could help him) and other outpatient programs and rehabs. At one such program, he joined a body image group, where he met another man with BDD.
“For me, to find another guy I could talk to this about was huge,” Ben said. “He became my BDD sponsor. For one of the first times, I was hearing somebody say verbatim what I was going through.”
Ben experienced relief from BDD symptoms through the combination of these therapies. Upon leaving the last program in 2015, he felt confident that he could implement the strategies he learned to cope with BDD.
But the pandemic proved triggering and, as for many others, made him feel isolated and disconnected. He began resuming the routine mirror checks, submitting to nearly daily discussions with himself over whether he should shave and if so, how much hair he should shave off. Leaving the house for work — he manages outdoor spaces and has continued to do so throughout the pandemic — could sometimes take hours because he felt he needed to ply his hair with products beforehand.
“People with BDD aren’t just a bunch of vanity cases,” Ben said. “We need promises and we need to know and understand that a good life can be had, that we can have a loving partner, that we can be happy.”
Ben looked into seeing a therapist who specializes in working with people with BDD, but he said that even though he has insurance, individual sessions would cost him between $300 and $400. Instead, he joined not only the BDD Foundation, but also a California support group called BDD Anonymous, which a woman named Katie created in April in response to her own worsening symptoms of BDD during social distancing. There are about 12 regular members.
“Normally, I would go to meetings for different groups like Sex Addicts Anonymous and when I get out, I see people and get hugs and feel socially connected. These groups weren’t BDD-related, but I was getting the support that was distracting me from my BDD,” Katie said. She is not addicted to sex herself, but she attended these groups because there is no official 12-step program for BDD and she found the established framework useful in approaching her own struggles.
“Being in isolation and not seeing people pushed me to do something to directly address the BDD because I was just alone with it and couldn’t deny it anymore,” she said.
BDD can be treated with cognitive behavioral therapy, which focuses on addressing the disorder's repetitive thoughts and behaviors of the disorder, and serotonin reuptake inhibitors, antidepressants that can help reduce compulsions. While there are currently no medications approved by the U.S. Food and Drug Administration specifically for treating BDD, "clinical experience suggests that SRIs are safe and effective for the majority of people with BDD," the International OCD Foundation wrote on its website.
Jessie, a United Kingdom-based fashion designer, is one of many people who have found relief with medication. When her BDD symptoms worsened at the beginning of the pandemic, she was prescribed fluoxetine.
“I had the stigma of ‘if I go on medication, that means I'm a mad person,’ which is terrible, because when we have a physical condition, we don’t second-guess taking the medication we need for it like we do for a mental health condition,” Jessie, who is also a member of the BDD Foundation, said. “But having this group where I can talk to people who understand and no one would blink an eye at the things you said makes you feel less isolated and destigmatizes BDD and getting treatment.”
Other people — like Amal, who has taken up painting during the pandemic, and Sabra Boyd, who recently wrote an essay for HuffPost in which she detailed her experiences with BDD during the pandemic — have found art and writing to be therapeutic outlets in coping with the disorder.
“I survived child trafficking and incest abuse, but my body dysmorphia has plagued me in ways that I never anticipated during the coronavirus quarantine,” reads the opening line of Boyd's essay, titled “Zoom And FaceTime Are The New Normal, But They’re Literally Making Me Sick.”
“I just try to remind myself that it’s my perception, but with Zoom and social media, you’re seeing your own image reflected back all the time, and it just makes me think of the myth of Narcissus. No one should stare at their own reflections all day,” Boyd, who tries to request phone calls instead of video meetings, told NBC News. “I’ve had a lot of people reach out to me after getting the essay published, telling me that this is also what they’re going through, and it’s heartening to see that sharing my story is helping people feel less isolated.”
Since BDD is a spectrum disorder, there are people who found that some of their symptoms have actually abated during the pandemic.
Joseph, who wore masks outside before the pandemic because he has cold urticaria, which causes him to develop hives when his face is exposed to the cold, said the pandemic has given him “a socially acceptable” excuse to cover his face. Before, if he wore a mask during the spring, people would stare at him, which exacerbated his BDD.
Lindi Ortega, a musician based in Canada, said she’s been able to cope with BDD during this time by rediscovering her love of nature and implementing tools she’s learned through years of therapy. She still pulls on a baseball cap sometimes as a security blanket before leaving her house, but she’s no longer taking hours to get ready.
“I had OCD about putting on tons of makeup, and even after the four hours of getting ready, I would be really dissatisfied with the way I look,” Ortega, who developed BDD after years of childhood bullying, said. “For a lot of people, the isolation is unbearable, but for me it’s been a chance to just simply be.”
If you or someone you know is in crisis, call the National Suicide Prevention Lifeline at 800-273-8255, text HOME to 741741 or visit SpeakingOfSuicide.com/resources for additional resources.