What Is Olfactory Reference Syndrome (ORS)?
Olfactory reference syndrome (ORS), also known as olfactory reference disorder, is an underrecognized and often severe condition that has similarities to obsessive-compulsive disorder (OCD) and body dysmorphic disorder (BDD). People with ORS think they smell bad, but in reality, they don't. There's a profound mismatch between their own perception and the perception of other people.
People with ORS may worry, for example, that they have bad breath or bad-smelling armpits, or that they emit a foul odor from their genitals, anus (often flatulence), feet, skin, or other body area. People with ORS may worry about emitting a bad body odor from any part of their body; the types of odors and body areas listed here are just some examples. People with this condition are usually ashamed of and embarrassed by the foul body odor thatthey believe they emit, and they feel self-conscious around other people.The odor concerns cause significant emotional distress or interfere with the person's day-to-day functioning (usually both).
Some people with ORSactually smell the bad body odor(s) that they believe they give off (that is, they experience olfactory hallucinations,smelling something that other people don't smell). Others with ORS don't actually smell the foul body odors(s), but they mistakenly believe that they smell bad because they misinterpret the behavior of other people. For example, if someone says "It's stuffy in here," sniffs or coughs, or opens a window, theperson with ORS misinterprets these comments or behaviors as being a negative reaction to them, signaling that they smell really bad. In reality, the comments or behaviors have nothing to do with them. Many people with ORS experience both -- they smell the odor and also misinterpret others' behavior.
It's worth mentioning that olfactory hallucinations sometimes reflect a neurological problem such as temporal lobe epilepsy (a type of seizure disorder) or migraine headache, rather than ORS,especially if the person has other symptoms of these disorders.In these neurological disorders, the odors usually aren't perceived to emanate from one's own body (unlike in ORS), and they tend to smell like burning rubber or other non-bodily odors. In addition, the person doesn't typically have other ORS symptoms that are described on this page.
What Are Some Other Symptoms of ORS?
People with ORS perform repetitive behaviors (also called "rituals" or "compulsions") because their body odor preoccupations are upsetting, so they want to check, fix, cover up, or get reassurance about how they smell to try to feel better. The problem is that these behaviors don’t help. In fact, they keep ORS going and can even make it worse. Common excessive behaviors (and the percentage of people with ORS who do them at some point in their life) include:
- Smelling one's self: 80%
- Showering (to try to get rid of perceived odor): 68%
- Changing clothes (so the perceived body odor doesn't make clothes smell bad, or to remove clothes that the person thinks smell bad because the clothes have been in contact with the perceived body odor): 50%
- Seeking reassurance about body odor (for example, asking "Do I have bad breath?"): 45%
- Dieting/unusual food intake (for example, to decrease perceived flatulence): 45%
- Brushing teeth (to minimize perceived bad breath): 40%
- Laundering clothes (to get rid of perceived odor): 30%
- Comparing one's body odor to that of other people: 30%
Other common symptoms of ORS include:
- Camouflaging the perceived odor - for example, by using lots of perfume or fragrance, gum, deodorant, mints, mouthwash, or toothpaste
- Embarrassment and shame
- A belief that other people take special notice of the person in a negative way because of how they smell (for example, talk about them or move away from them)
- Social anxiety and social avoidance
- Low self-esteem
- Anxiety and depressed mood
- Use of alcohol or street drugs to try to cope with ORS symptoms
- Suicidal thinking and behavior
How Is ORS Different from More Typical Body Odor Concerns That People May Have?
Here are some of the key differences:
- Body Odor: First, people with ORS don’t actually have a bad body odor, even though they think they do. They misperceive how they smell.
- Preoccupation: People with ORS are preoccupied with body odor; they obsess about it. Typically, they think about their perceived body odor for at least an hour a day (and usually for many hours a day).
- Emotional Distress and/or Interference in Functioning: The preoccupation with perceived body odor causes significant emotional distress, such as depressed mood, anxiety, or even thoughts of suicide. Or, the odor concerns interfere with the person's day-to-day functioning -- for example, they may make it hard to be around other people and participate in social activities, go to school or work, or do other activities. Some people with ORS think they smell so bad that they won't leave their house because they don't want other people to smell the odor they believe they emit. For most people with ORS, their ORS symptoms cause both significant emotional distress and significant interference in functioning.
How Common Is ORS?
Good prevalence studies haven't been done. It's likely, however, that ORS is much more common than generally believed. But ORS often goes unrecognized and undiagnosed.
Who Gets ORS?
Anyone can get ORS. This condition occurs around the world. It affects people of all ages, genders, races, and ethnicities. ORS usually starts during adolescence or young adulthood.
How Serious Is ORS?
ORS is a serious psychiatric disorder. It's associated with high rates of psychiatric hospitalization, suicidal thinking, and suicidal behavior.
What If I Or Someone Else Thinks I Might Have ORS, But I Believe I Really Do Smell Bad?
This is a common situation: a person obsesses about perceived body odor, which causes them emotional distress or interferes with daily functioning. Yet, the person thinks they don't have ORS because they think they really do smell bad (even though they really don't). These individuals actually do have ORS.
By definition, people with ORS have a distorted perception of how they smell. ORS isn't a problem with how the person actually smells; it's a problem with how they perceive themselves. Most people with ORS think that their view of how they smell is definitely or probably accurate. But in reality, it's inaccurate.
If you think you smell bad but other people don't, I encourage you to be open-minded and find out if you have ORS. There's no downside to doing this. If you actually smell a bad odor, depending on the type of odor and your other symptoms, it may be ORS, but it may also be wise to be sure that you don't have a seizure disorder or another medical condition that might explain your symptoms. If you're diagnosed with ORS, I encourage you to try treatment for ORS (see below). Treatment is often effective and can be life-saving.
What Treatments Work for ORS?
Treatments for ORS haven't been well studied. However, clinical experience (including my own) and published case reports and case series in medical journals suggest that treatments similar to those used for body dysmorphic disorder (BDD) and obsessive-compulsive disorder (OCD) may be helpful:
- Medications called serotonin reuptake inhibitors (also known as SRIs, or SSRIs): These are non-addictive widely prescribed medications that help stop obsessive thoughts and compulsive behaviors. They also often alleviate depression, anxiety, social anxiety, misinterpretation of the behavior of others, low self-esteem, suicidal thinking, and other ORS symptoms. In my clinical experience, higher SRI doses are often needed (like for BDD and OCD) than are typically used for conditions such as depression or anxiety.
The SRI medications are fluoxetine (Prozac), sertraline (Zoloft), escitalopram (Lexapro), paroxetine (Paxil), fluvoxamine (Luvox), clomipramine(Anafranil), and citalopram (Celexa). These medications' brand names, which are in parentheses, may differ in different countries. These medications are probably all equally effective for ORS, but I generally prefer the first three medications in this list, and citalopram is not recommended. But the best medication choice can differ for different people and needs to be individualized for each person.
- It's possible that medications called neuroleptics (such as aripiprazole, also known as Abilify) may be helpful when added to a serotonin-reuptake inhibitor.
- Cognitive-behavioral therapy (CBT): This "here-and- now" practical treatment helps change problematic ORS thoughts and behaviors. CBT for ORS helps people develop more accurate and helpful thoughts and beliefs; get better control over their repetitive and time-consuming behaviors (rituals), such as checking for body odor; and feel more comfortable being around other people. A published treatment manual (guide) that is evidence-based (i.e., supported by scientific research studies) isn’t available for therapists to use. However, CBT for ORS appears most similar to CBT for BDD; thus, therapists can consider using the following treatment manual, while adapting it to ORS symptoms: Cognitive-Behavioral Therapy for Body Dysmorphic Disorder: A Treatment Manual, by Sabine Wilhelm, Ph.D., Katharine A. Phillips, M.D., and Gail Steketee, Ph.D. (published by Guilford Press, New York, NY, 2013). In my experience, this treatment manual for BDD can be easily adapted to treat ORS by making only minor changes to the manual. For example, words pertaining to body odor should replace words that pertain to physical appearance, and repetitive behaviors relevant to ORS (such as excessive clothes laundering) should replace repetitive behaviors relevant to BDD (such as excessive grooming). Mirror retraining, which we use when treating BDD, is not needed for ORS.
In published reports in scientific journals and in my clinical experience, these treatments often improve ORS preoccupations and compulsive behaviors such as checking one's body for odor. These treatments also usually help people feel more comfortable in social situations and less depressed and anxious. Some people improve when treated with medication alone or with CBT alone, whereas others benefit from receiving both treatments at the same time. For more severe symptoms, treatment with both medication and CBT concurrently is usually recommended.
Some people with ORS seek treatment of their odor concerns from non-mental health clinicians, such as ENT (ear, nose, and throat) doctors, dentists, dermatologists, surgeons, gastroenterologists, and gynecologists. Some even have surgery, such as a tonsillectomy or removal of sweat glands. Although very little scientific research has been done on the effectiveness of these treatments, they do not appear to be helpful. Thus, non-mental health treatments such as these are not recommended for ORS.
What Causes ORS?
The cause of ORS isn't known. However, it's likely that -- like other psychiatric conditions -- ORS results from a complex combination of genetic predisposition/neurobiologic factors as well as life experiences and sociocultural factors.
Hope for People With ORS
ORS can be severely distressing and impairing, to the point where some people consider suicide. But there is hope for people with ORS! If you're diagnosed with ORS, I encourage you to try the medications and/or therapy discussed above. These treatments can help free you of odor preoccupations and rituals, depression, anxiety, social anxiety, and other associated symptoms. They are often effective and can be life-saving.
For More Information About ORS
Olfactory Reference Syndrome: Demographic and Clinical Features of Imagined Body Odor, by Katharine A. Phillips, M.D., and William Menard, B.A., published in General Hospital Psychiatry.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3139109/
Olfactory Reference Syndrome: Problematic Preoccupation with Perceived Body Odor, by Katharine A. Phillips, M.D., published in the International OCD Foundation’s Newsletter https://iocdf.org/expert-opinions/olfactory-reference-syndrome-problematic-preoccupation-with-perceived-body-odor/
I've also published articles about ORS (also known as olfactory reference disorder) in the Merck Manual. You can read the consumer version here and the professional version here.
Contact Me
I've been evaluating and treating people with ORS for more than 25 years. If you'd like to see me for a one-time evaluation so I can give you treatment recommendations, or if you live in New York State, Connecticut, or New Jersey and would like to see me for ongoing treatment, please call the Weill Cornell Psychiatry Specialty Center at 646-962-2820, email me at kap9161@med.cornell.edu (all lower case), or contact us.
Photo credit: Sander van der Wel. Foter. CC BY-SA (young man)
