Olfactory Reference Disorder (ORD): An Under-Recognized Syndrome

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鈥檚 misperception that they smell bad.

鈥淧eople with ORD fervently believe that they emit a foul odor that others find disgusting, even though other people don鈥檛 actually smell it,鈥 says Dr. Katharine Phillips, professor of psychiatry and attending psychiatrist at 91探花.

Thanks to her efforts, however, ORD won鈥檛 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.

What is ORD?

It isn鈥檛 obsessive compulsive disorder (OCD), psychotic depression or schizophrenia, Dr. Phillips says. It鈥檚 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鈥檙e usually 100 percent certain that they smell bad and that others find them repellent. This belief is at the heart of the disorder.

What causes it?

Some have speculated that cultural factors may play a role in ORD鈥攅specially 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. 鈥淚t has been reported in such dissimilar cultures as Japan, Nigeria, Saudi Arabia, Brazil and Western countries. That means it鈥檚 probably a worldwide phenomenon.鈥

鈥淪ome patients describe having been told in childhood or adolescence that they smelled bad, whether they did or not. That could trigger ORD, but it鈥檚 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,鈥 she says.

What is the 鈥渞eference鈥 part of the disorder?

Referential thinking, Dr. Phillips says, is central to ORD. It鈥檚 all about thinking that other people are taking special notice of you in a negative way, even though they actually aren鈥檛. For example, if someone opens a window, sniffs, or makes a comment like 鈥渋t鈥檚 stuffy in here,鈥 people with ORD mistakenly think that their body odor is the cause. If you have ORD, it鈥檚 all about the way you supposedly smell (but don鈥檛).

Potentially severe impairment

ORD can cause a lot of shame, leading to social isolation. 鈥淧eople with ORD don鈥檛 want to go out and don鈥檛 want to spend time with other people. They believe others will be disgusted by their bad breath, stinky sweat or other vile odor.

鈥淢any people with the disorder are quite impaired,鈥 she continues. 鈥淭hey can become extremely isolated, and they may even quit their job because they think people are making fun of them, even though that isn鈥檛 actually happening. It鈥檚 all a misperception.鈥

Repetitive and camouflaging behaviors

To counter their 鈥渂ad鈥 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鈥攐ne characterized by obsessive, erroneous thinking.

The wrong treatments

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 鈥渂ad and sweaty鈥 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.

鈥淭he data that we have, while limited, suggest that these treatments don鈥檛 work,鈥 she says, 鈥渢he way cosmetic treatments don鈥檛 work for people with BDD. For obvious reasons, we don鈥檛 recommend these treatments, which may do far more harm than good.鈥

The right treatments

In treating ORD, Dr. Phillips usually prescribes the same medications that have proven effective for people with OCD and BDD. 鈥淚 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.鈥

Later, adding a neuroleptic like Abilify (aripiprazole) can be helpful if the SSRI alone isn鈥檛 working well enough, she adds, but neuroleptics can sometimes cause side effects. She typically adopts a policy of 鈥渨ait and see鈥 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鈥攖he same type of therapy that鈥榮 effective for those with BDD.

鈥淲e鈥檒l start with cognitive strategies to address the mistaken ideas; for example, that others are taking special, negative notice of you,鈥 Dr. Phillips says. 鈥淲e aim to make you aware of your cognitive 鈥榚rrors鈥 along these lines, such as your putative ability to read others鈥 minds.鈥

Then, she鈥檒l 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鈥檚 an example. Let鈥檚 say you鈥檙e a student, but you鈥檝e been avoiding going to class, because you think you stink. 鈥淲e鈥檒l have him attend school and engage with social situations more often,鈥 she explains, 鈥渨ithout dashing into the bathroom beforehand to apply a little extra deodorant. The process is very gradual.鈥

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.

Still under-recognized

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)鈥攁 worldwide standard for classifying diseases and health conditions.

She also refers patients to the . 鈥淵ou can find a consumer version online. It鈥檚 published in more than 14 languages. And it鈥檚 free.鈥

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 . Make an appointment with a mental health professional at 91探花 here.

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