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medical examiner: Health and medicine explained.

The Nose That Never KnowsThe miseries of losing one's sense of smell.

By Elizabeth Zierah
Posted Tuesday, July 8, 2008, at 5:36 PM ET

Illustration by Alex Eben Meyer. Click image to expand.

Smells are surer than sights and sounds to make your heart-strings crack.—Rudyard Kipling

There was nothing remarkable about the cold I caught. But a few weeks after I was otherwise back to feeling normal, my sense of smell and taste hadn't returned. I went to my doctor, and he said I had a sinus infection, prescribed antibiotics, and told me not to worry. That was three years ago.

Since then, I've been to internists, allergists, and otolaryngologists, none of whom have been able to help me. They provided only a diagnosis—anosmia—the medical term for "you can't smell anything." The specialists thought my anosmia probably originated with a virus but had become chronic due to the severe allergies I developed after moving to Northern California. I began searching the Internet like a cyber bloodhound (at least I could sniff virtually) for the trail that would lead to my missing sense of smell. I tried nasal washes, nose sprays, herbal remedies, steroids, acupuncture, antihistamines, dietary modification, meditation, and visualization. A few worked for very brief periods, but nothing lasted.

In The Scent of Desire, an insightful book about the sense of smell, Dr. Rachel Herz points out that most people don't much value theirs. She cites a study that shows people ranking the loss of various physical attributes and putting smell at the bottom. They considered it equivalent to losing a big toe.

But in reality, Herz writes: "For those with this devastating condition called anosmia, everything changes. Our sense of smell is essential to our humanity: emotionally, physically, sexually, and socially." All you normosmics (that's the actual term for those with a normal sense of smell) might think that's over the top. But Herz is right. I lost normal function on the left side of my body from a stroke when I was 30, and although I've had a strong recovery, I still have limited fine-motor control in my left hand, I walk with a limp, and I can't feel much on my affected side. Yet without hesitation I can say that losing my sense of smell has been more traumatic than adapting to the disabling effects of the stroke. As the scentless and flavorless days passed, I felt trapped inside my own head, a kind of bodily claustrophobia, disassociated. It was as though I were watching a movie of my own life. When we see actors in a love scene, we accept that we can't smell the sweat; when they take a sip of wine, we don't expect to taste the grapes. That's how I felt, like an observer watching the character of me.

It's clinically documented that acquired anosmia often leads to anxiety and depression. Just take a look at any online anosmia support group, and you'll see thread after thread discussing how to fight sadness, frustration, and loss of sex drive. In extreme cases these distressing emotions can become overwhelming. The Scent of Desire begins with the story of Michael Hutchence, the lead singer of INXS, who hanged himself in 1997. Herz makes the case that Hutchence's anosmia, which he developed from a blow to the head, contributed to the severe depression that ultimately led to his suicide.

According to the NIH, more than 200,000 people visit a physician each year for help with smell disorders or related problems. Although there are no hard numbers, doctors in the field conservatively estimate that 2 million Americans suffer from smell loss. The lack of treatments or cures, despite the prevalence, reflects anosmia's many causes: viruses, head trauma, disease, aging, or psychological issues. Also, the sense of smell has only recently become the subject of serious scientific inquiry. Research began to take off after Linda Buck and Richard Axel received a Nobel Prize in 2004 for the discovery of the gene sequence for olfactory receptors. But consistently effective treatments for smell disorders remain elusive.