I

was 33, a stay-at-home mom with four kids, and life was busy, when I first started to have these strange episodes. I’d feel dizzy or lightheaded, my pupils would look dilated, I’d get tingling and flushing on my skin, or I’d have nausea and vomiting and other gastrointestinal symptoms. Sometimes these attacks would last 30 minutes, other times they’d last hours.

I had no idea what was going on. I made an appointment with a gastroenterologist. He did some testing, and everything came back normal. My internist did some blood tests, and everything was normal as well. I was sent to neurologists, cardiologists, and rheumatologists. I did blood tests, CAT scans, MRIs. In all, I spent six years searching for a diagnosis.

In my experience as a patient in the medical system, doctors all have a specific specialty, so they have a deep, but not a broad knowledge. Once you have a diagnosis, you can find a knowledgeable doctor, but until then you’re shuttled from doctor to doctor until, with enough time and Hashgachah pratis, you end up at the right specialist. I learned that it’s important to tell your doctor all your symptoms. In the beginning of my journey, I would think, Should I tell my neurologist my GI symptoms? What does one have to do with the other? I learned it’s very important to share everything to save yourself a lot of time, energy, and doctors’ appointments.

It was really hard being sick and not knowing what was wrong with me. The doctors were concerned it was Lyme disease or multiple sclerosis. Having young kids at home was also challenging. My husband was a big help, especially since he works from home, and I’m also a really organized person. When I was feeling well, I would cook a lot of dinners and freeze them, so that when I got a flare-up, my family would still have a home-cooked meal. I also davened a lot during this time. We took on mitzvos as a family. I’d say, “Hashem, please help me.” I knew I was doing everything I could, and the rest was in His Hands.

Finally, after years of doctors and testing, a rheumatologist diagnosed me with Sjögren’s disease. It’s a systemic autoimmune disease that causes dry eyes and mouth. Now I knew why my eyes were so dry all the time that I had to switch from contacts to glasses. With everything I had been dealing with, that had been the least of my worries, but it was an important clue. Sjögren’s left my immune system in a constant state of activation, and that lead to a secondary immune problem — mast cell activation disorder, or MCAS.

Mast cells are immune cells whose job is to detect threats and release chemicals to protect the body. With MCAS, mast cells release these chemicals too easily, misinterpreting everyday chemicals such as fragrances as a threat, and triggering extreme immune responses to them, with a range of reactions from headaches and dizziness to breathing problems and heart symptoms. Not everyone who has Sjögren’s disease will go on to develop MCAS, but it raises the risk.

I was thrilled to get a diagnosis because now I was able to put a label on it, and take steps to try to minimize flare-ups.

On the other hand, a whole new challenge was just beginning. I went through all my personal care products — makeup, lotions, toiletries, cleaning supplies, laundry. I did my research and I bought all new fragrance-free products. It was hours and hours of work, but that was still the easy part.

The hard part is other people.

“Would you mind not wearing any perfumes or lotions or anything when we have appointments with you?” I asked my son’s speech therapist. “I have an allergy to fragrances.”

She nodded, but I could tell she wasn’t committed enough to be on top of it. And she wasn’t. She’s completely entitled to wear whatever she wants, but being around her made me lightheaded. In the end, I had to switch therapists.

When there’s a Chanukah party at the community center, the little kids want to go, but I can’t, so I have the older kids take them. I’d love to be there together with my whole family, but I know that place uses fragrances.

Even normal, everyday activities can cause havoc. I want to go to the mall and take my teenage daughters shopping, but almost every clothing store has fragrances, as does the air in the mall lobby, so I do all our clothing shopping online. When I go to my family and friend’s houses, they know my situation, and, of course, they’re careful not to use perfumes or fragrances, but still I need to ask, “Did you just clean your house?” Because if they just used Mr. Clean, I could have a reaction.

It’s all been very frustrating and isolating. I’m a social person, a real extrovert, and I’ve had to reduce my social interactions and simchah attendance to a bare minimum.

But the most painful part is the lack of understanding. I told one friend the reason I couldn’t attend her simchah, and she said, “Oh, okay, so I guess you just weren’t interested in coming.” I would have loved more than anything to be able to attend! People don’t believe that I have a real condition and sadly, I’ve lost friends over this. Fragrances are invisible and that makes it hard for people to take seriously. The other issue is that I often get a delayed reaction, so you’ll see me at a simchah smiling and looking fine, and you don’t realize that tomorrow I’ll be sick in bed.

Today, there’s a great deal of understanding about food allergies. Most yeshivos are nut- and seed-free, and if a student has a particular allergy, the school will send out a note to remind their classmates to be careful. Many conscientious parents won’t let their kids take a peanut butter sandwich to a public place where they’re likely to encounter people with a peanut allergy, but they won’t think twice about spraying on perfume before going out.

With food there’s also FDA oversight and the companies have to write all the ingredients on the package. If there’s a certain allergen it says it in bold letters, but with fragrances, it’s still completely unregulated.

We as a community have tackled so many things that used to be taboo in the past, and my hope is that we can get the community to be aware of this issue and make some changes. If a few businesses say, “We’re going to stop using diffusers in our store,” it could start a trend where we all become more aware of what we’re breathing in. This is a lot bigger than just me. I know a woman with a fragrance allergy who doesn’t drive, and she can’t get into a car service because of those little trees with “air-freshener” they hang in the car. Those little trees aren’t natural. They’re not just something nice and sweet smelling. They’re toxic.

Another family I know has a son with MCAS and his yeshivah used a diffuser. They had never heard of a fragrance allergy, and they didn’t believe it was a real thing. He had to switch schools. A friend of mind has a more severe case of MCAS than I do, and she has been in and out of the emergency room from fragrance exposure.

Our way of life revolves around being together, going to simchahs, sharing nachas with our friends and families. Covid was so painful because it forced us to miss those special events that bond us with the community, but for people with fragrance allergies it’s as if Covid never ended. I still can’t dance with you at your wedding, go to your son’s upsheren, or celebrate at your daughter’s bas mitzvah. But you’ve invited me and I’d love to come.

For a long time, people with fragrance allergies were told that it’s all in their head or that they should just hold their nose and go. But fragrance sensitives are real. And creating fragrance-free spaces doesn’t require stripping life of beauty or warmth. It means choosing products labeled fragrance-free, ventilating well, and being mindful that “clean” doesn’t have to smell like anything at all. Because really, who would you rather have at your simchah — a friend or a diffuser?

Not Making Scents

A research study by Dr. Anne Steinemann, a professor at the University of Melbourne, showed that almost one in three people have a sensitivity to fragrance, and those with autism or asthma are particularly affected.

A quarter of those with fragrance sensitivities have lost workdays or a job due to it. She cited an example of a teacher who had to leave her job because the air fresheners in the hallways made her eyes burn, and an office worker who had to quit because her coworkers’ perfume gave her terrible migraines, describing them as “the hidden costs of fragrance.”

On an ingredient label, “fragrance” looks harmless, but it can represent dozens or even hundreds of chemical compounds. Under US law, fragrance formulas are considered trade secrets. Manufacturers aren’t required to disclose what’s inside them.

Scientists analyzed 25 common fragranced consumer products including laundry products, personal care products, cleaning supplies, and air fresheners and found 133 volatile organic compounds in them, 24 of which were classified as toxic or hazardous under US law. The level of toxic chemicals are small, but even low-level exposures add up.

So-called “green products” didn’t do much better. According to Dr. Steinemann, fragrances labeled natural are often found to contain synthetic chemicals when tested in the lab, so switching to essential oils or botanical fragrances doesn’t makes products safer.

“Air fresheners and deodorants don’t ‘clean’ the air,” Dr. Steinemann writes on her website, “but rather add potentially hazardous chemicals to an existing air quality problem.” There are natural ways to make a place smell good, she says, such as through using bamboo or charcoal to absorb unpleasant odors. Another element is that we’ve become concerned about things smelling pleasant, when really they only need to smell neutral, not pleasant. Clean doesn’t have a scent.

(Originally featured in Family First, Issue 978)