Lung Disease and Fragrances Don’t Mix in My Life

Living with scleroderma requires adjustments to ward off breathing crises

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by Lisa Weber |

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The sweet little boy approached his desk. As I looked up to greet him, a wall of cologne slammed into me like a wave from a tsunami. Immediately, I began coughing and gasping for air.

That may sound like an overreaction, but it’s exactly what was happening. My lungs seem to have a panic attack any time heavy fragrances, smoke, or chemicals replace fresh air. At such times I have difficulty keeping up with my body’s supply and demand for oxygen, especially when oxygen is competing with chemicals.

Living with interstitial lung disease

Scleroderma has scarred the lower portions of both of my lungs, making it impossible for me to take deep breaths. Instead, I breathe faster with short, shallow breaths.

When I was diagnosed with interstitial lung disease in 2015, I lived in a constant state of dizziness and was always gasping for air, similar to hyperventilating. I felt as though I couldn’t get enough air. I had to train my mind to stay calm and retrain my diaphragm to use my lower muscles to slow each breath.

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I fought back against the hardening of my lungs by strengthening the undamaged muscles. Just three years after being diagnosed with interstitial lung disease, I was running 3 to 4 miles a day. Every day, I pushed a little more. And every day, I got a little stronger.

Most people would never know I have lung disease. I’m aware of when I’m reaching my limit and need to stop and rest. As soon as my breath feels uncontrolled or I become dizzy, I drop everything. I make up all kinds of excuses so I can discretely catch my breath.

Unnatural fragrances make breathing hard

But I can’t fake it when good ol’ oxygen is replaced with powerful chemicals. My lungs are always working overtime to keep up, so any time they get irritated, they sound the alarms.

At first, I get a nagging dry cough. But within a minute, the mucus begins to build up, and it’s as if I’m drowning. The sound of choking on fluid and simultaneously gasping for air is terrifying and impossible to hide.

Imagine being that young student sitting in front of a teacher whose face is bright red and eyes filled with tears, and who’s convulsing with gurgling coughs.

In this case, I was lucky that a teacher in the room next to mine came over to say, “Mrs. Weber’s OK! She just swallowed her coffee down the wrong pipe and needs a second.” She gave them what I couldn’t — relief and permission to carry on with their morning routine. I set up my makeshift teaching desk by the window for the rest of the day.

In a world that loves powerful fragrances, it’s challenging to navigate life with lung disease. Air fresheners, candles, lotions — they’re everywhere. As a teacher, I can call parents to explain that I have “allergies” and kindly ask that their children not wear perfume or cologne. But as a guest in someone’s home? Or in someone’s car? Sometimes my only option is to remove myself from the scenario.

Adapting is a way to stay strong

Even in my home, there are struggles. While I use essential oils to add pleasant aromas to our clothes and air, my teenage daughters still crave those trendy, popular body sprays. I work hard at protecting them from scleroderma. I vowed to do my best to keep it from limiting them in any way. Though a body spray is small and unimportant in the grand scheme of life, it’s a normal teenage indulgence.

To keep everyone happy, we set up strict routines. They spray themselves right before leaving the house and are careful to only do it outside. By the time they get home from school, most of it has worn off and I can tolerate the subtle scent that’s left. But if I’m going to be with them, they know to forgo the spray altogether.

Life with scleroderma doesn’t stop; it just changes. I’m much happier now that I don’t fight each challenge, but rather lean into them and find a way to adapt. Anger and worry never helped me solve anything. By putting all my energy into continuing the journey, I found joy again.

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.


Paula Lindsey avatar

Paula Lindsey

Thanks for the information. I will take all this into consideration when attending the Health Equity Summit next week. None of my powerful perfumes are going on the trip with me !


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