Invisible Illness: Anosmia

When you think of a sense that is absolutely necessary to function, your mind immediately jumps to hearing or sight or touch. Not smell. And while smell may not be completely necessary for us to live, the loss of smell can have an incredible impact on how you live your day-to-day life. A student at Westwood, who has chosen to go by Harper, experienced this first hand.

“I was diagnosed with anosmia, which roughly means a loss of your sense of smell, a chronic loss, no longer than a period of six weeks,” Harper said. “The symptoms that rose from that almost exactly mirrored those of anorexia even though I never got an official diagnosis.”

Anosmia often goes undiagnosed due to its varying causes. This loss of smell can lead to serious effects on taste, among other things, and a significant decrease in quality of life. In Harper’s case, all food she ate tasted awful, which lead to her loss of weight and appetite.

“[Anosmia] was not only not allowing me to taste food, but it was making everything that I ate and smelled taste rotten,” Harper said. “I couldn’t smell to make sure something was good. Everything tasted bad; the only way I could know that I wasn’t eating something rotten was by looking at it.”

Harper’s anosmia was caused by a bone growth in her nose that blocked her sinus cavity. Other common causes range from sinus infections to certain medications and even more significant causes like cancer.

“Anosmia is a very common issue. Often times when people get a cold or a fever or the flu, you’ll notice that you get congested and then you lose your smell for a short period of time,” Harper said. “Chronic anosmia is rarer. It can be an indicator of cancer, but often times it’s harmless and it’s not very well known.”

Harper’s anosmia began at a young age and without warning. The bone growth led to a prolonged sinus infection of sorts, and removed her sense of smell completely. Because of the condition, she went from being a happy, active child to having a serious problem with food.

“From the beginning, growing up, I always ate everything. I loved food, I loved trying new things, wasn’t picky,” Harper said. “Between the age of 10 and 12 years old, very slowly, I started having issues with eating. I became very picky, that was the external view. It looked as though I became a fussy eater.”

From her reluctance to eat food stemmed social issues and conflict. To some, her lack of eating around people raised blunt questions that Harper was not necessarily willing to answer or explain, and the insensitive comments damaged her self-esteem.

“Growing up I was an active member of the church and when it started really being a problem was we would have dinners at church and every single adult would comment ‘Why aren’t you eating, you never eat here, why aren’t you eating?’” Harper said. “It was really uncomfortable, so then I made a decision: I’m not going to eat around people.”

Harper’s problems did not stop there. Her aversion to eating led her eat very little every day, and what she did eat, due to her lack of taste, was unhealthy. Her poor diet only magnified her problems, and she was never quite sure if what she ate hadn’t gone bad. As a result, Harper took to heavily scrutinizing her food to assure its freshness.

“If you’ve ever had a sinus infection, the only things you can taste are stuff that is really salty or really spicy or really sweet, so I ended up having a this really poor diet when I wouldn’t eat anything because everything made me feel nauseous,” Harper said. “There was one time more recently when I was 16, when I was eating a turkey sandwich and I got like three quarters of the way through before realizing that it was rancid.”

Her eating habits also caused Harper to lose a large amount of weight. At the start of freshman year, she was abnormally underweight and created a case of anorexia that went undiagnosed due to her already small size and the fact that her dislike of food did not stem from body image.

“I weighed 70 pounds freshman and sophomore year of high school,” Harper said. “[We thought] it’s not anorexia because anorexia means that you want to be thinner. That’s not necessarily true. I don’t want to discredit that for many people, it is body image. I don’t want to say that that experience is any less valuable, but I do want people to know if you have a neurological issue with eating, even if it’s not related to body image, that can still be anorexia. I didn’t realize that for a really long time, so we discounted that.”

Another problem that Harper encountered with having the condition was a difficult diagnosis. While doctors determined that her loss of smell was causing her taste problems, there was no way to treat that. She was often turned away with little to no help and no further to finding answers on the cause of her anosmia.

“We went to the doctor and we were like ‘Hey I think I have anosmia,’ and they were like ‘Yeah, well, can’t do anything about that,’” Harper said. “So we did a ton of googling, we looked through a very long list of doctors, I went through four doctors before we found one who said ‘I want to do a CT scan.’”

The bone growth in Harper’s nose was extremely unusual, and created a blockage because of the strange shape it grew in. And while there was a procedure to remove the bone and expand space in her nose, the surgery was risky and had a barely one percent success rate.

“There’s a bone in the bridge of your nose that keeps your nose upright and for most people, it goes outward in kind of an L shape on either side from the bridge inside your nose,” Harper said. “For me, having this genetic anomaly, mine was like an O shape, it was a full loop. For me, being already a small person and having developed that at such a young age, it was blocking my sinuses.”

The surgery removed part of the bone that was blocking Harper’s nasal cavity and causing her anosmia. For her, it brought back her sense of smell immediately.

“We didn’t expect anything to come from it, I was totally prepared for that,” Harper said. “I woke up in the hospital, and the nurse came up and she put chapstick on me and I remember smelling mint. And I started crying in the hospital.”

The road for recovery did not stop there. Her newfound sense of smell and taste created a new host of problems: regaining the weight she had lost over the seven years, and dealing with the continuous comments from other people.

“[It’s] been a little bit over a year now,” Harper said. “I have gained 30 pounds, I am at 92. I’m in the healthy weight range but I’m at the bottom end. I’m trying to get up there. You know, the first 30 came really quick, like it always does. Now the last 10 is an uphill climb. But I’m healthy.”

Despite regaining most of the weight she lost back, Harper still has to endure comments from her peers about her food intake. Still maintaining a small stature, she has found people on occasion who offer their opinion on her weight and health.

“You know, someone will ask how I’m doing and I’m like ‘Great, I had this surgery, and I’m trying to gain weight now because I was unhealthy,’” Harper said. “I can’t tell you how many times I’ve had adults, kids too, but I’m mostly horrified by the adults, saying ‘Why? I wish I was as thin as you.’ No you don’t, you don’t want to be cold all the time, you don’t want to feel like you’re going to throw up after you put water in your mouth, you don’t want to have to go to the doctor every month because you’re bleeding irregularly.”

After dealing with anosmia for seven years, Harper wishes that there was more information and accommodations for people suffering from anosmia.

“I don’t think people understand just how much little things like that can have on your quality of life,” Harper said. “I think that we, as a culture, need to learn how to accept people for the differences they have in the ways that they do eat. And we need to respect people’s boundaries. I think a large part of that comes down to not commenting on things that another person can’t change in under five minutes.”

For Harper, anosmia controlled seven years of her life. She was forced to eat barely anything, suffered every day because of breathing problems and feeling ill, and over a year later, she has finally felt like recovery is here. But many others are still struggling with anosmia, and she hopes that her story will raise awareness to the condition.

“You can’t prevent anosmia, it’s just something that happens to you and it’s terrible,” Harper said. “What you can do is you can make a safe space for people who do have it and who are struggling with it. And you can monitor what you say, what you think, and you can ensure that those thoughts and those words are in the other person’s best interests and that they are not harmful.”