May 26, 2010— -- People with Olfactory Reference Syndrome feel they are the elephant man of body odor -- so repugnant to society that no one would ever want to stand near them never mind go on a date.
Often sufferers fall into depression and shut out the world because of their stench. But doctors say the stench is entirely in their head.
Instead of a glandular problem, these people actually suffer from Olfactory Reference Syndrome (ORS).
"A lot of them got to see GI doctors, surgeons, or dentists and dermatologists -- one patient in our study had their tonsils removed because they thought that their breath smelled so bad," said Dr. Katharine Phillips, a psychiatrist at Rhode Island Hospital and a professor of psychiatry at Brown University.
"More than one third of our patients received these types of treatments and in no case did the treatment help the ORS symptoms," she said.
Phillips presented a study on 20 people with ORS -- one of the few studies in the literature -- at the American Psychiatric Association meeting in New Orleans Tuesday.
She found the relatively unknown syndrome wrought havoc on people's lives. Sixty-eight percent of people with ORS) have thoughts of suicide, and 32 percent attempt it.
On average they spent three to eight hours a day obsessively thinking about their various odors that no one else can smell. Forty percent of people in the study spent at least a week housebound for fear that others could smell them.
The imagined source of the smell can come from almost anywhere, but most commonly 75 percent of people thought their stench came from bad breath. Sixty percent of people in the study thought body odor from their armpits would bother others, and 35 percent thought there were odors from their genitals.
Phillips said patients can be so delusional about the smell that they are often misdiagnosed as schizophrenic. Her study found 85 percent of the subjects had delusional beliefs that they had overpowering body or chemical odors. The fact that 15 percent of people had an idea that they really didn't smell convinces many that the problem is a mental one, not an extreme sensitivity to a specific odor.
Delusions About Body Odor Can be Devastating
"A delusional disorder is someone who has absolute conviction, they're 100 percent convinced that they are emitting an offensive body odor," said Jennifer Greenberg, a clinical research fellow at the OCD and related disorders program at Massachusetts General Hospital and Harvard Medical School.
While many delusional patients are treated with antipsychotics, Greenberg said, "What we are starting to think more about is that the disorder presents like disorders that are closer to obsessive compulsive disorder."
The patients who end up at specialized clinics such as Greenberg's, Phillips' and the OCD Center of Los Angeles often receive cognitive behavior therapy designed to retrain them to enter society and face their fears of reeking.
"Attempting to convince a person that they don't smell isn't going to produce great results," said Tom Corboy, a licensed marriage and family therapist and director of the OCD Center of Los Angeles.
Instead, Corboy said therapists might use a cognitive behavioral technique called "exposure and response prevention."
"We will purposely have them eat foods that they are afraid of eating for fear of having bad breath, and then have them engage in conversation with people or approach people," said Corboy. "Likewise, when we get clients who have obsessions with other parts of the body. I will have clients purposefully exercise and then not shower and engage in social activities."
After the "exposure," ORS suffers try not to revert to their compulsive behaviors of showering, brushing their teeth, asking for reassurance that they don't smell or avoiding people altogether.
Corboy said antidepressants such as selective serotonin reuptake inhibitors can help treatment.
Because ORS is not listed in the Diagnostic and Statistical Manual of Mental Disorders -- the so-called "Bible" of therapists -- Corboy said many doctors aren't even aware of the disorder.
"It's pretty rare in my experience in terms of how many people come in for treatment," said Corboy. "But the flip side is it's probably more common than we think because they go to great lengths to cover up the smell and avoid people."
Often the lack of awareness isolates people suffering from ORS even further.
Olfactory Reference Syndrome is Rarely Studied
"A lot of people live with these disorders think that no treatment could possibly work," said Keri Brown, a behavior therapist with the Houston OCD Program.
While there aren't enough statistics to estimate how many people suffer from ORS, Brown said new reports on the disorder should actually give people hope.
"It's important to know that it's more common than people realize and to seek help," said Brown.
People who think they may have olfactory reference syndrome can click HERE to take an online test set up by the OCD Center of Los Angeles.