One day, you go to have your morning coffee and it tastes like sewage. It tastes so disgusting, so foreign and unlike coffee that you want to gag. Welcome to the world of parosmia: the distortion of smells.
In 2012 I lost my sense of smell after a virus. Total smell loss, as I had it then, is called anosmia. This is a little-known condition that struggles to get airtime. It’s invisible. Many do not even know it has a name. Doctors, if they have heard of it, tend to disregard it because until recently there has been little that can be done for people who are affected. Doctors want to fix things, and if they don’t have a tool in their toolbox that will help, they are at a loss.
My anosmia came suddenly after a bad virus. That morning, I woke up to a world that felt two-dimensional. I quickly made a tour of my bathroom to see if I could smell the toothpaste, the soap, the shampoo. Nothing. My food was tasteless. Every meal was like eating cardboard. I was divorced from a beautiful spring day or a day at the seaside. As the weeks turned into months, my lack of smell came to dominate every moment of the day. Life was dispiriting and the color drained from every aspect of my human experience.
Smell loss is a quality of life issue. Unlike certain conditions that you might be able to forget about on a good day (I also have a chronic condition called Sjögren’s, which I manage carefully), smell loss is with you 24/7. So much remains unknown about human olfaction and the role it plays in our experience of the world. Most people have never given it much thought. In fact, a recent study in Australia among university students showed that more participants would prefer to sacrifice their sense of smell than their telephone! It is an invisible and undervalued sense.
We are just learning about the important role smell plays in brain function. Smell is located in the same part of the brain where emotions and memory are processed. If I ask you to recall an important smell memory, say for instance the smell of your grandmother’s kitchen, it will conjure up a vivid image. A holiday like Christmas or Thanksgiving, for instance. These kinds of early smell memories, that are so strong and evocative, survive because they were forged both by a smell and an emotion. The two go together and are intrinsically linked in the brain. You won’t remember your license plate number by attaching it to a smell in your mind. For a smell memory to stick, you need to have been feeling something at the time.
After a period of months with anosmia, I started to get inklings of smell. At first these smells were disorganized and didn’t tell me a lot about what I was smelling. I compare it to the sound of static instead of music on the radio. After a while, I was able to pick up several different “static” smells — still unmeaningful and quickly becoming disgusting. This smell disorder is called parosmia. People describe smells of burning, sometimes cigarette smoke. The smells can be foul, rancid, sick-making. Some people feel the urge to vomit when the problem is severe. For me, the problem was so bad that I couldn’t be in the room when certain foods were being prepared. For me, the main culprits were coffee, fried foods, onions, browning meat (roasts, frying bacon), eggs, artificial flavorings and certain perfumes. Not only were these smells disgusting, but they would get “stuck.” I’d catch a whiff of something awful that would stick with me for the day, repeating in my mind over and over the same way tinnitus repeats in the ear.
I started to lose weight. I couldn’t bear to go near food. I also couldn’t bear to cook or be in the grocery store. I felt like a ghost in my own home — my family expected me to be my own self, and I tried hard to carry on but I just couldn’t. Outwardly I appeared the same, but inwardly every day became a terrible battle. Add to this was the utter impossibility of describing what was happening to me. People just didn’t understand. My family and friends were at a loss to see why this should be such a big deal. When I tried to describe this new, disgusting world of smells called parosmia, people looked blank. No, really, this smells like sewage to me.
Curiously, the one thing that should have smelled like sewage — feces — didn’t smell like sewage at all. This is a mystery that is well known to parosmics. Why is one of the smelliest things no longer so awful when you have parosmia?
After about a year I started to get some more definition to my new smell-world. The constant sewage smells seemed to recede somewhat, although the distortions remained. I easily recognize the smell of an orange or a poppy-seed bagel now, but neither of these things smell the way they used to. They are “new” smells. Almost all of my smells are “new.”
All this was seven years ago. Today I am the founder of a charity called AbScent which operates in the U.K. but serves a membership, through the website and Facebook group, that is all over the world. My drive to start the charity rose out of my desire to create the kind of resources for people with smell loss that I did not have available to me when I was in my greatest hour of need. We provide educational resources for smell training, a scientifically proven therapeutic technique to assist people who are recovering from olfactory nerve damage.
We also have started two important research projects with internationally recognized olfactory researchers. The first is a survey that will look at both at quantitative smell loss (a reduction in your ability to smell) as well as qualitative smell loss (an alteration in the way you perceive smell — parosmia). Known as the Sense of Smell Project, it also drills down into the way people have adapted to their smell loss and smell dysfunction and their long term outcomes. But the most crucial mission of AbScent is to provide a forum where we can share our knowledge of this chronic condition. We have something to offer the research community.
This concept is beautifully illustrated in the second research project started by AbScent. Through a chance meeting at a conference last year, I met Dr. Jane K. Parker of the University of Reading, and when she heard my story, she wanted to help. Jane is a chemist working in food science. When I shared the many stories that had been told in our forum about the kinds of foods we find so disgusting, she saw a pattern. We are now five months into this exciting project with interesting, and surprising, results.
Smell loss is bewildering and parosmia can be unbearable. It wasn’t until I spoke out about it that I realized the power of many voices together. My role model remains Sharon Terry of the Genetic Alliance, who says in her wonderful TED lecture: “together we have the answers in us.” We won’t change the way smell dysfunction patients are treated, and raise awareness, unless we open up and contribute our stories so new priorities in our health care can be set.