On a Sunday morning, you wake up to the sound of your growling stomach and head to the kitchen to prepare a delicious breakfast. As you start cooking, you notice an odd metallic smell lingering in the air, but you can’t quite pinpoint its source. Regardless, you continue and eagerly dive into your meal, only to realize something is terribly wrong. The eggs taste off, and the smell has intensified to an unbearable degree. As the day progresses, the stench becomes even more powerful, leaving you feeling nauseous and sick, you realize this is not a temporary inconvenience. Within a few hours, you find that every food you have ever known & loved in your entire life now has the same rancid, putrid taste. And the simple act of enjoying a meal would soon become an unattainable dream. 

For the past 2 years and 4 months, living with long covid has been my new reality and what was once the pleasure of eating has now become a daily torment.

In January 2021, my world was turned upside down when I was diagnosed with parosmia, a rare neurological disorder that affects a small percentage of COVID-19 survivors. Parosmia is characterized as olfactory nerve damage that alters your perception of taste and smell. It is as if the wires that typically transmit sensory information to the brain, have become crossed and distorted, resulting in an unpleasant series of smells. Picture your favorite foods smelling like rotting garbage or chemicals. This is the reality for those living with parosmia.

“Imagine walking into a restaurant and it just smells like they’re burning trash. Imagine going out during a rainstorm and the rain smells like chemicals. There’s no joy associated with any kind of smell at all anymore,” Ashley Zibetti, a parosmia patient, said. 

I was among the many who tested positive for COVID-19. While the symptoms were moderate, I experienced a loss of taste and smell. Eventually, all senses returned to normal, but this was only the calm before the storm, the sense of normalcy would soon be shattered by this terrifying illness. 

One day, my mother stumbled upon an article on social media titled “Parosmia: ‘Since I had COVID, food makes me want to vomit,” and my entire world changed. As I skimmed the page, a sense of tranquility washed over me, finally providing an explanation for the experience I had been enduring. While I hoped this new knowledge would lead to a solution, the reality was far from ideal. Despite all efforts to explore the internet for answers, the research on parosmia was surrounded by ambiguity. Doctors offered no solutions, and even Google could not provide an answer to the simplest question: How long would this issue last? Everyone was equally in the dark with no clear end in sight.

“The problem is even if you have a diagnosis, what does that get you? Not really anything, Parosmia can’t be cured. Parosmia is subjective. It’s like a nothing diagnosis,” Chrissi Kelly, founder of U.K. charity AbScent said. 

Dealing with this disease has been a challenging journey, one that has brought valuable lessons about perseverance. Regardless, it also came with a slew of setbacks and issues that demanded a shift in mindset, yet despite the difficulties, there were lessons to be learned. Perhaps the most challenging aspect of parosmia was adjusting to a new diet. I had to eliminate all protein sources, fruits, sweets, and most vegetables. Pasta was the only food that tasted normal, and so it became my go-to meal for the next 27 months. However, over time, this monotony became unbearable. Eating the same thing every day led to fatigue and frustration, and my hopes for healing began to dwindle.

The impact of this condition extended beyond a diet. Within a few months, people & places started to smell nauseating. This made it challenging to maintain connections and balance a social life while navigating in a world that doesn’t smell, taste or feel the way it once did. Holidays and social events were particularly difficult, and it would signify the struggle to feel a sense of belonging. I never realized how much food could impact my life until I was seated at a large table, watching everyone pass delicious-looking food and smiling broadly. It felt as though a part of my identity had been taken away from me. 

“I’ve had to learn to deal with feelings of anxiety and frustration…Locked away in my bedroom hiding under the duvet to block out the bad smells at dinner time, avoiding the kitchen at work, and eating alone in a separate part of the building,” ​​Abbie, a parosmia patient, said. 

Dealing with this condition has been an intense and ongoing mental battle. My anxiety has been overwhelming, and there have been times when I have had to force myself to eat, even when the thought of food made me feel sick. Parosmia is a condition that few people are aware of and those who have not dealt with it may not fully understand or appreciate the seriousness of the situation. In all honesty, I may not have either, if I had not lived through it myself. Unfortunately, people’s responses to this condition have often been disheartening. Phrases like, “That’s all in your head,” “Just force yourself to eat,” and “I wish I had that so I could be skinny.” are a daily occurrence, and hearing these remarks repeatedly has taken a significant toll. 

Despite all efforts, none of the known remedies seemed to work and the light at the end of the tunnel was nowhere in sight. However, this time I refused to let despair take over. I was determined not to let this disease drain my energy or deprive me of opportunities. With it came a course of action; finding the silver lining. I looked for online support groups, developed a cheerful attitude, and learned to navigate my way through the challenges, I resolved to use this experience as a way to learn and grow. By training my mind to see the good despite the obstacles, I found that my perspective on life began to change, and so did I.