Identity

'In the Mirror, What I Saw Was a Monster': Living with Body Dysmorphic Disorder

Those who suffer from body dysmorphic disorder (BDD) fixate obsessively on one or more perceived flaws in their appearance, resulting in depression and social anxiety—and, in extreme cases, thoughts of suicide. But despite the severity of the condition...

by Stephanie Dubick
Nov 22 2016, 4:10pm

Illustration by Vivian Shih

At age 26, Natalie* tried her hand at acting. But after a series of unsuccessful auditions, she began to lose confidence in herself. "I blamed not getting gigs on my appearance," she recalls. "I began to feel ugly, and I started to hate everything about me. I hated my waistline, how my hair looked, my complexion, my height. It was horrible." As her negative thoughts became more intrusive, Natalie fixated obsessively on her perceived flaws.

She began to experience intense feelings of social anxiety. On the occasions that she could bring herself to leave the house, she dressed in baggy clothing and tried to hide her face. "I was convinced everyone else felt the same way that I did about my appearance," she explains. "It got to the point where I wanted to commit suicide. I said to myself, 'I am depressed, I hate my body. I need to see a doctor. And if that doesn't work, nothing will. I'm not pretty enough to live.'"

It was at this point that Natalie called a suicide hotline; the operator recommended she see a therapist. Soon after, she was diagnosed with body dysmorphic disorder (BDD).According to the Body Dysmorphic Disorder Foundation, nearly two percent of the US population suffers from BDD, a body-image disorder characterized as an excessive fixation, or preoccupation, with an imagined defect in appearance. In many cases, it can lead to severe emotional distress and difficulties in day-to-day living. Common behaviors among BDD patients include skin picking, excessive tanning, a constant need for reassurance from others about their looks, and hair concerns.

Read more: When Does 'Clean Eating' Become an Eating Disorder?

Though studies have concluded that BDD affects men and women roughly equally, there are differences in the types of preoccupations: Women are more likely to be occupied with their hips, their weight, their skin, and camouflaging perceived flaws with makeup. With men, there's a large focus on body build (often resulting in muscle dysmorphia), genitals, and hair thinning. In the most extreme cases, people with BDD are rendered incapacitated—unable to work, attend school, socialize, date or even walk outside due to an overwhelming anxiety that they'll be judged or ridiculed based on their appearance.

"When people with BDD feel like they have a day when they look better or they look good, the world seems safer to them," Scott Granet, director of the OCD-BDD Clinic in Northern California, tells Broadly over the phone. "That's one of the things that I talk about with a lot of my patients: that in some ways, BDD is about safety. The effort that people put into looking better is often a way for people to feel safe."

Although BDD causes people to obsess over their appearances, experts emphasize that the condition is far from superficial. Those who suffer from BDD may have difficulty maintaining relationships, and tend to cover up a body part, or several body parts, that they deem defective with makeup or extra layers of clothing (also referred to as "safety behaviors"). These rituals, or compulsive behaviors, are time-consuming, repetitive, and result from a need to diminish negative thoughts about their appearance. "It really has nothing to do with vanity," says Granet. "It really has to do with survival. Most people with BDD don't want to look perfect—they want to look good enough to fit in."

Dr. Ari Winograd, the founder and director of the Los Angeles Body Dysmorphic Disorder & Body Image Clinic, believes that people with BDD suffer not only from a need to fit in, but also from profound shame in their perceived flaws. "In my opinion, BDD is not an anxiety disorder," says Winograd. "There is anxiety, but it's a very shame-based disorder. People with BDD have anxiety because they don't want to be humiliated."

I am depressed, I hate my body. I need to see a doctor. And if that doesn't work, nothing will. I'm not pretty enough to live.

For the majority of people who suffer from BDD, this lack of safety and shame often develops during adolescence and early teen years, when kids are most susceptible to judgment from their peers. While the root cause of BDD has yet to be determined, doctors cite brain abnormalities, genes, and environmental factors such as media images and a cultural fixation on appearance as contributing factors to low self-esteem and fixation on one or more flaws.

Matt*, a former psych technician from Utah, experienced hair concerns as a teen in the early 90s. Common in males with BDD, hair concerns stem from a fear of hair loss or going bald and can drive patients to cover their hair with caps, hairpieces, wigs, and scarves, while some undergo cosmetic procedures and hair transplantations. Patients also focus excessively on facial hair, or having too much or too little body hair, and go to extreme lengths to remove it by shaving, waxing, or plucking in order to reduce anxiety—which can be a very time-consuming ritual that can result in infection, disfigurement, and scarring.

In his senior year of high school, Matt started to fixate on his hair, spending hours examining it in the mirror, feeling uneasy when it was out of place, and adjusting it until it felt perfect. But once he graduated high school, and moved back to his home state of Utah, Matt's symptoms manifested into a full-blown obsession. "When I started looking in the mirror, what I saw was a monster," he says. "It was a real distortion of my actual appearance. I kept noticing that I would go back to the bathroom and fixate on it. I couldn't pull myself away from the mirror."

Soon, things started to get worse, and eventually Matt's life started spiraling out of control. "It got to a point where I was late to work," he recalls. "I couldn't go to school, and I had to withdraw from college. It was just really paralyzing. I couldn't hold a job for a number of years. I was simply tied up in the bathroom. It's embarrassing. I spent so much time fixating on my appearance that it dominated my waking hours. I wasn't able to function." Matt eventually sought help from a local psychologist, but without recognizing the signs of BDD, the doctor was unable to treat him at first. "I wasn't giving him a ton to work with. I was holding back a lot," he says.

Many doctors aren't trained in recognizing the telltale signs of BDD, leaving those suffering from the condition vulnerable. Dr. Sabine Wilhelm, the founder of the BDD Clinic at Massachusetts General Hospital, and author of Feeling Good About the Way You Look: A Program For Overcoming Body Image Problems, believes that while patients may hold back information about their symptoms, the problem also lies with physicians. "A lot of doctors don't recognize it when they see it," says Wilhelm, "even when they have a patient with BDD right in front of them. Before BDD was as well known, it was very common for patients to just tell me that they had been in treatment for many years and that their BDD was never diagnosed and they were never asked about it."

Even when healthcare providers do possess the tools to identify and treat BDD, the lack of clinics specializing in treating the condition in the US can prevent patients from receiving appropriate care. According to The BDD Alliance, a website devoted to BDD-related news and issues, only a handful of hospitals and clinics in the US specifically treat BDD. On the West coast, there's theOCD Center of Los Angeles, the LA BDD & Body Image Clinic, and the OCD-BDD Clinic of Northern California. On the East coast, there's Mass General, the Bio Behavioral Institute, The Body Dysmorphic Disorder Program at Rhode Island Hospital, and CBT Solutions of Baltimore. In Wilhelm's opinion, widening the network of access is a huge priority. "Even patients who come to Mass General have to wait because we have so few specialty programs," says Wilhelm. "If you live in more rural parts of the country, you probably don't have access at all."

When I started looking in the mirror, what I saw was a monster.

As Wilhelm sees it, one of the most pressing priorities is training providers throughout the country in how to best treat BDD. Since the mid-90s, he has been working with Katherine Phillips, the founder and director of the BDD Program at Rhode Island Hospital and author of The Broken Mirror, to come up with treatment manuals, modules, and therapy studies for providers working with BDD patients. One of their main focuses is Cognitive Behavioral Therapy(CBT), a treatment that, over time, helps patients to pinpoint the source of their anxiety and change their maladaptive thoughts, such as, "I'm unlovable."

"With CBT we're really teaching the patients to see the big picture," says Wilhelm, "and to not get caught up in one detail. We work a lot on self-esteem as part of the treatment, because when patients often come in, their entire self-worth is tied in with their appearance concerns, and over the course of treatment it changes."

For some patients, CBT proves extremely useful: Jennifer* had struggled with BDD for years before undergoing turning to CBT as a form of treatment. When she started therapy, her symptoms, which included depression and bulimia, were so severe that they were keeping her from attending class and work. In her first few sessions, her doctor used perceptual mirror retraining, a technique used for developing a healthier relationship between patients and mirrors, before transitioning her to CBT treatment. "It was a lot of finding the root of why I felt like I need to be in control of things," says Jennifer. "A lot of it is not so much what you look like—it's about being in control. It wasn't so much me realizing, 'Oh, I'm beautiful, I'm a good person.' It was finding the trigger points of why I'd get anxious, why I would get depressed, and finding those reasons and then fixing those parts."

Most people with BDD don't want to look perfect—they want to look good enough to fit in.

Along with CBT treatment, other BDD treatments include exposure response prevention—which places patients in situations that confront their fears until the fear subsides, and works to prevent patients from engaging in avoidance or escapist behaviors—and selective serotonin reuptake inhibitors (SSRIs), antidepressants like Celexa, Prozac, Paxil, and Zoloft that are used in the treatment of major depressive and anxiety disorders. While there are no medications approved by the FDA to treat BDD, studies and clinical trials have shown that SSRIs are safe to use and often lead to patients becoming less stressed, less anxious, and their quality of life has shown to significantly improve over time, especially when paired with CBT. "Hopefully we'll have more medication studies in the near future," says Phillips, "because relatively few have been done. But [the ones that have been conducted] all show that these medications are often really helpful in decreasing the preoccupations, the compulsive behaviors. The urges aren't as strong, and it improves anxiety and suicidality."

Every expert interviewed emphasized the importance of looking at BDD holistically and working to address the root causes of the disorder in treatment. "Every BDDer has a story," says Winograd, "and everyone comes in with very similar looking symptoms, but one thing we make sure we don't do is say there's one cookie cutter method to treat these individuals, because not only is that invalidating their experience, it doesn't work. Everybody's symptoms come from a different etiology, and our job is to find out who the patient is and then treat them based on how their BDD developed."

For More Stories Like This, Sign Up for Our Newsletter

As treatment and research steadily evolves, the need for BDD awareness among doctors and the public is vital. While an increase in media attention in the last few years has led to a better understanding in how BDD develops over time, and how best to treat it, there are still significant gaps in education, both for providers and those suffering from the condition. "I think the biggest problem we have right now is that treatments are not very well disseminated," says Wilhelm. "It's important that this starts to happen."

Like Wilhelm, Phillips believes that not only do clinics providing BDD treatment need to be more accessible, and that more studies need to take place, but that awareness for people experiencing symptoms of BDD needs to improve. "We need to get the word out to people that there are BDD treatments that work and they're likely to help," says Phillips. "If you get the right CBT, or the right medicine at the right dose, you're likely to get better. I encourage people to give it a try."

* Names have been changed