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This is part 3 in a series of 3 articles. Part 1 focused on obsessive compulsive disorder (OCD) in children, while part 2 addressed that condition in adults.
Could concern about body odor be at the center of a psychiatric disorder?
It can be, and it is.
While body dysmorphic disorder (BDD) causes some people to fixate on some slight or even nonexistent flaw in their appearance, olfactory reference disorder (ORD) is all about a person’s misperception that they smell bad.
“People with ORD fervently believe that they emit a foul odor that others find disgusting, even though other people don’t actually smell it,” says Dr. Katharine Phillips, professor of psychiatry and attending psychiatrist at Weill Cornell Medicine.
Thanks to her efforts, however, ORD won’t remain in the shadows much longer. Her expertise in BDD has allowed her to meet the challenges of a related disorder that deserves to be better known and better understood.
It isn’t obsessive compulsive disorder (OCD), psychotic depression or schizophrenia, Dr. Phillips says. It’s a distinct syndrome in which a person believes they have horribly bad breath, or that they emit a sweaty odor, genital odor, fecal odor or some other bodily odor. They’re usually 100 percent certain that they smell bad and that others find them repellent. This belief is at the heart of the disorder.
Some have speculated that cultural factors may play a role in ORD—especially cultures that emphasize cleanliness, like our own. Social media, too, may amplify these effects. But Dr. Phillips thinks that the cause is more complex.
Descriptions of the disorder have been around since the 19th century, she says. “It has been reported in such dissimilar cultures as Japan, Nigeria, Saudi Arabia, Brazil and Western countries. That means it’s probably a worldwide phenomenon.”
“Some patients describe having been told in childhood or adolescence that they smelled bad, whether they did or not. That could trigger ORD, but it’s unlikely to have been the only cause. Like other mental health conditions, ORD is a multi-causal brain disorder, rooted in both genetics and environmental factors,” she says.
Referential thinking, Dr. Phillips says, is central to ORD. It’s all about thinking that other people are taking special notice of you in a negative way, even though they actually aren’t. For example, if someone opens a window, sniffs, or makes a comment like “it’s stuffy in here,” people with ORD mistakenly think that their body odor is the cause. If you have ORD, it’s all about the way you supposedly smell (but don’t).
ORD can cause a lot of shame, leading to social isolation. “People with ORD don’t want to go out and don’t want to spend time with other people. They believe others will be disgusted by their bad breath, stinky sweat or other vile odor.
“Many people with the disorder are quite impaired,” she continues. “They can become extremely isolated, and they may even quit their job because they think people are making fun of them, even though that isn’t actually happening. It’s all a misperception.”
To counter their “bad” odor, a person with ORD may shower for three hours a day, change their clothes seven or eight times or brush their teeth excessively. They may try to camouflage their odor with soap, perfume, deodorant or mouthwash to hide the smell.
Although ORD is not the same as OCD, it shares some aspects of that disorder. For example, people with ORD spend a lot of time on rituals that are designed to remedy a problem they believe they have—one characterized by obsessive, erroneous thinking.
Instead of seeing a mental health professional, a person with ORD may ask their dentist for prescription mouthwash. They may try to have their axillary glands removed from their armpits to eliminate their “bad and sweaty” odor. Or they may even seek to have their anus removed via a procedure called a proctectomy if they think that they emit a fecal odor.
“The data that we have, while limited, suggest that these treatments don’t work,” she says, “the way cosmetic treatments don’t work for people with BDD. For obvious reasons, we don’t recommend these treatments, which may do far more harm than good.”
In treating ORD, Dr. Phillips usually prescribes the same medications that have proven effective for people with OCD and BDD. “I start with an SSRI (selective serotonin reuptake inhibitor) to ease the obsessional thoughts that characterize both of these disorders. And if needed, I use a higher-than-usual dose.”
Later, adding a neuroleptic like Abilify (aripiprazole) can be helpful if the SSRI alone isn’t working well enough, she adds, but neuroleptics can sometimes cause side effects. She typically adopts a policy of “wait and see” before considering that option, unless her ORD patient is severely ill or more highly suicidal.
But medication alone may not be enough for people with severe ORD, who tend to do well with a combination of medication and therapy—the same type of therapy that‘s effective for those with BDD.
“We’ll start with cognitive strategies to address the mistaken ideas; for example, that others are taking special, negative notice of you,” Dr. Phillips says. “We aim to make you aware of your cognitive ‘errors’ along these lines, such as your putative ability to read others’ minds.”
Then, she’ll move on to exposure and response prevention (ERP). Patients undergoing ERP deliberately expose themselves to their fears without performing the usual rituals that may bring short-term relief.
Here’s an example. Let’s say you’re a student, but you’ve been avoiding going to class, because you think you stink. “We’ll have him attend school and engage with social situations more often,” she explains, “without dashing into the bathroom beforehand to apply a little extra deodorant. The process is very gradual.”
Self-esteem work also figures into treatment, with the help of cognitive techniques. That approach helps to downsize the sense of shame that comes with ORD and BDD.
Although ORD is still under-recognized and under-researched, Dr. Phillips points to resources that are educating psychiatrists and other mental health professionals about the disorder and guiding their decision-making process with respect to diagnosis and treatment.
As well, the World Health Organization has included ORD in the most recent issue of its publication, the International Classification of Diseases (ICD)—a worldwide standard for classifying diseases and health conditions.
She also refers patients to the Merck Manual. “You can find a consumer version online. It’s published in more than 14 languages. And it’s free.”
With greater awareness, ORD will be better recognized as a unique disorder that can and should be treated as such. Hopefully, it will no longer be misdiagnosed as a psychotic disorder, and that means people who have it will be able to find the treatments they need. The right treatments!
Learn more about ORD through our On the Mind podcast. Make an appointment with a mental health professional at Weill Cornell Medicine here.
