WILKES-BARRE — It’s not a scientific survey, just a question a grieving father asks people now and then.
“Do you know,” Leo Ellis will ask, “what body dysmorphic disorder is?”
“Nine out of 10 people say they’ve never heard of it,” Ellis said.
That lack of knowledge has given Leo and his wife, Sharon, a mission. The Hanover Township couple want to spread the word about the disorder, which tormented their daughter, Jessica, for years, until she took her own life in September, at age 31.
“I miss her every day,” Sharon said. “She was the sweetest kid.”
“Sometimes I feel like she’s still giving me hugs,” Leo said, wiping moisture from his eyes.
“I hope she won’t want to hit me on the back of the head now,” he said with a wan smile, explaining Jessica was a private person, and might not appreciate having her parents share her story.
“But if it can help one person …” Leo said.
“We want people to know help is out there,” Sharon said.
Body dysmorphic disorder is a mental condition in which a person becomes obsessed with body image, fretting about a perceived flaw for hours every day and shunning social contact. Friends and family typically assure them they look just fine, even beautiful, but they seem unable to accept that.
“It’s often confused with vanity, which it isn’t. It’s a brain-based, psychiatric condition,” said Dr. Katharine Phillips, a psychiatrist in New York City who has written several books on the subject.
Some patients with BDD believe their nose is too large or their muscles too small. They might think they have too much hair on their body, or too little on their heads. They might fixate on acne or freckles, a scar or a mole.
In Jessica’s case, though most people who see her photograph describe her as beautiful, she saw her face as not symmetrical.
“She thought she was hideous,” Leo said. “She thought she was unworthy of love.”
So, how can you help a person who looks into a mirror and sees ugliness where others see beauty?
“If you suspect someone you care about has BDD, you should listen sympathetically. Don’t dismiss their concerns. Don’t ridicule them,” said Phillips, who is on the faculty at Weill Cornell Medical College and on the staff of New York-Presbyterian Hospital, both in New York City.
“This is kind of like anorexia, but different. It’s like obsessive compulsive disorder, but different,” Phillips said in a telephone interview. “Encourage them to see a professional who is familiar with BDD. Don’t just tell them to ‘stop worrying.’”
“We do have effective treatment,” Phillips said, explaining some people are helped by cognitive behavior therapy, in which a therapist guides patients into new patterns of thinking and into facing social situations without trying to hide the “flaw.” Others are helped by medications such as serotonin reuptake inhibitors, and some by a combination of therapy and meds.
“For people with very severe BDD, I always recommend both,” Phillips said. “Someone with more moderate symptoms can choose one or the other.”
One strategy she would not recommend is cosmetic surgery, Phillips said, explaining patients typically are dissatisfied with the results and/or transfer their fixation to another part of the body.
The psychiatrist, whose has devoted most of her practice to BDD since the 1990s, estimates between 2 percent and 3 percent of the population has some degree of BDD. The cause is unclear, she added.
“There’s never any one thing that causes any mental illness,” she said. “It’s most likely a combination of factors. You could be born with genes that cause you to misperceive yourself. Twin studies suggest genetics play a role.”
“Our culture’s focus on appearance probably does play a role, but that’s not the only explanation. Some people report being teased a lot, and that kind of makes sense. They could be at greater risk. We can theorize, but there’s no way to answer with any certainty.”
There could be an evolutionary basis to the disorder, Phillips said, pointing out that BDD usually starts during adolescence, when people begin thinking about whether or not they’re a desirable mate. In the animal kingdom, Phillips said, attractiveness can signify greater health and ability to reproduce.
“BDD is more common than anorexia and more common than obsessive compulsive disorder,” Phillips said. While some cases are mild, serious cases cause “a lot of emotional distress, and people think life is not worth living. It interferes with day-to-day functioning, work and school.”
For Jessica, a talented artist whose work won awards at Wilkes-Barre’s Fine Arts Fiesta when she was a teenager, the disorder led to increased isolation. She had earned a degree in painting and illustration from Luzerne County Community College in 2007 and continued to create “wearable art” that was sold at local stores, but she abandoned her plans to continue studying art at Kutztown University.
At one point, her mother remembers, Jessica confided her feelings to a pair of friends who exchanged a glance with each other and “never called her again.”
“She said, ‘See what happens when I’m honest?’” Sharon said, adding sadly, “You really find out who your friends are.”
Her parents assured Jessica of their love. In fact, Leo said, it’s comforting to remember “I love you” as the last message they exchanged with their daughter. “It’s so important to say that,” Leo said.
The Ellises took Jessica to various doctors and therapists, wishing with all their hearts that she would get well, but it was not to be. “I asked one doctor if she had ever seen a case more serious than Jessica’s, and she said ‘no,’” Sharon said.
But Phillips, speaking in general about the disorder, said she has seen many people with BDD improve.
“Serotonin reuptake inhibitors (which act as anti-depressants) have now been shown to effectively treat BDD,” Phillips said. “They help stop mirror checking and excessive grooming. They’re helpful for depression and suicidal thoughts. Cognitive behavioral therapy helps patients develop more accurate ways of thinking.
“Once you learn the skills, if you really weave them into day-to-day life, you’re likely to continue to do well. A majority of people do substantially improve.”