I developed allergic contact dermatitis as an adult, resulting from a fragrance and formaldehyde allergy. This is my story of living with a fragrance, formaldehyde and hair dye allergy.

On March 14, 2019, I discovered I had a fragrance and formaldehyde allergy. I shared the story of being diagnosed and accepting that I had allergic contact dermatitis in a previous post. This is part two of that story. The story of living with a fragrance and formaldehyde allergy, and letting go of my black hair.

When I finally accepted I had a fragrance and formaldehyde allergy, I was desperate for information. I didn’t know much about avoiding formaldehyde, and needed to find good fragrance-free products that I could use. Reading stories about other peoples’ experiences helped, so I want to share my story, too. If I can help one person deal with this, and not feel completely alone, this post will be 100% worth writing.

I need to add a disclaimer here. This post is not intended as medical advice, or as a way to help someone else diagnose an allergy. It’s just a story of my experience, and my discoveries. If you are questioning whether or not you have an allergy, you should contact a health-care professional for help. 

What Products Contain Fragrance?

I’m not going to lie, living with a fragrance allergy is not easy. Fragrance is in everything, and is everywhere. I’ve never been one to use lots of fragrance-filled body washes and perfumes, so I didn’t think it would be a huge transition. Boy, was I wrong. Every single product that I used had fragrance in it. My shampoo, conditioner, hair serum, soap, make-up and of course my Chanel’ perfume. It was also in every cleaning product I used – from carpet cleaner to laundry detergent and even the window cleaner.  I literally had to change everything.

When I was first diagnosed, my dermatologist emailed a 50+ page packet of safe products I could use. The list came from the American Contact Dermatitis Society. Members of the society, such as dermatologists, have access to CAMP, the contact allergen management program. The system is designed to help patients with allergic contact dermatitis find personal care products that are free of the ingredients responsible for their allergic reactions. My dermatologist put in the three substances that I reacted to – fragrance, formaldehyde and imidazolidinyl urea – and it compiled a comprehensive list of products that are free from all three substances.

The packet was enormous, and included everything from cosmetics and household products to medications and toothpaste. Under each category, it listed the brand and the exact product name that was safe for me to use. Some categories, like glass cleaner, only listed one product. Other categories, like nail polish, listed lots of options.

At this point, I had already switched some of my products to fragrance free.  ECOS free and clear became my new laundry detergent, and Free & Clear became my new brand for shampoo, conditioner and deodorant. I had also bought a case of Biokleen dish liquid, though I wasn’t using it exclusively.

It was a slow transition to all fragrance free products. Check labels before making any purchases became my normal , and all room fresheners got tossed in the trash. The only product that I continued to use, was my hair dye. It did contain fragrance, but since my patch test didn’t react to PDD,  I decided the small fragrance expose was worth the risk. The truth is, I wasn’t ready to accept anything but black hair.

How To Avoid Fragrance (In A Fragrance-Filled World)

What I found through this experience, is that switching to fragrance-free products is the easy part. It’s dealing with all of the fragrance around me that’s the real challenge. Even with all of the changes I made, I was still exposed to fragrance daily. With my allergy, if fragrance touches my skin, I become itchy. If it stays on my skin, I get a horrible rash.

I didn’t realize how many public bathrooms use air-fresheners, until I had to pay attention. One day, I remember going in the gym bathroom before starting my work out. They had one of those plug-in room deodorizers pumping fragrance into the air. I could literally feel it landing on my skin. I started to cry right there in the bathroom. Another day, I was running on the treadmill, when a woman started walking on the one next to me.  She had washed or dried her clothes with so much fabric softener, that within 10 minutes, I started reacting to it. My skin became so itching, I had to leave the gym.

Even in my own home, it’s hard. My daughter is a typical 14-year old who loved to experiment with make-up, body spritzers, hair products and room fragrances. My son used men’s products loaded with fragrance – deodorant, body wash, shampoo. And, so did Brian.

All clothes in my house are washed in a fragrance free detergent, and I don’t use fabric softener. But, my kids spend 50% of their time at their dad’s house. When they come home from spending time there, I can literally smell the fragrance in their clothes as they walk through the door. I have to be very careful to wash their clothes separate from mine, or else it will leach into my clothes in the washer. Then, I become itchy.

Brian and my kids don’t have these allergies, and I didn’t want my problem to impact them. Is it really fair to ask them to stop using all of their favorite products, just because I have developed an allergy to them? Or, should I avoid them – stop hugging my kids, sleep in a separate bed than Brian and avoid going into their rooms?  The alternative, was to say nothing, and just spread steroid cream all over my body for the rest of my life and deal with the itch.

Luckily, my family is fantastic. After seeing what I was going through, Brian made the switch to my fragrance-free shampoos and conditioner, and, other than regular deodorant, which I tell them they must use, my boys have transitioned to fragrance-free, too. My daughter stopped using perfumes and body sprays, and she’s sure to give me a head-up if she’s experimenting with her hair and using hair spray, so I don’t enter her room.

Nothing about living fragrance free is easy, but having to ask those around me to make changes was by far, the hardest part.

What Is A Formaldehyde Allergy?

I thought switching to all fragrance-free was hard, but it was nothing compared to finding formaldehyde. Pretty much everything that doesn’t have fragrance, has formaldehyde.

It’s a chemical used so widely across products in our environment, that it would be nearly impossible to list all of the possible sources.

According to DermNet NZ, formaldehyde resins are what provide the unique qualities to fabrics labeled permanent press, anti-cling, anti-wrinkle, waterproof finishes, suede and chamois – among others. It’s also found in paper products, building materials, paints/primers, cosmetics and toiletries (such as fingernail polish and mouthwash), household cleaners, disinfectants and polishes, medications ad building material. It’s a long list, and that’s not even everything.

Formaldehyde is also released in the smoke from burning wood, charcoal, cigarettes, natural gas and kerosene. For me, that means being very careful if I plan to sit around a campfire.

The hardest thing about having a fragrance and formaldehyde allergy, is trying to pin-point what bothers me and what doesn’t. Keeping a journal helped me recognize that sweating made my skin extremely itchy, especially my scalp. Some days, after I would finish exercising, I would sit and scratch my head so hard, my scabs would break open. Once I realized it was sweat, I made sure to shower and wash my hair immediately after I worked out.

I couldn’t figure out why my sweat would cause me to itch, until I read about formaldehyde clothing dermatitis. Apparently, sweat can leach free formaldehyde from formaldehyde resins, and cause allergic dermatitis. It has not been confirmed, but I suspect this was happening to me.

I read that Formaldehyde clothing dermatitis tends to affect parts of the body where there is friction between the skin and the fabric. I know for sure there’s something in clothing that my skin doesn’t like. Clothes that I had worn for years started causing me problems – even ones that have been washed many times. Jeans and sweaters have been the biggest culprits. I had to get rid of most of my sweaters, and when I do put one on, I tend to get a rash on my forearms. I’ve also noticed that, if I keep jeans on too long, a rash appears on my lower stomach.

I still wear jeans, but I am careful to shower as soon as I take them off. All my new clothing gets soaked for hours before washing it, and then, I wash it twice before wearing.

What Is An Imidazolidinyl Urea Allergy?

The third substance that I reacted to was imidazolidinyl urea – a formaldehyde- releasing preservative used in many cosmetics and pharmaceutical preparations. It’s a common ingredient in facial make-up, but it can also be found in other random products like sunscreen, make-up remover, cuticle removers, burn remedies and prescription topical medications.

The interesting thing about this substance, is that it’s not a common cause of contact allergy. For that reason, it is found in products specifically made for sensitive skin and even those labeled “hypoallergenic.”

It’s been about a year, that I’ve been learning to avoid my allergens. Throughout that time, I’ve had many skin rashes pop-up, but nothing like the one I described in my first post. I still experience exposure, but now I act immediately.

How I Learned I Was Allergic To Hair Dye?

Now, onto the hardest part of my allergy journey. My hair dye discovery. I already mentioned that I didn’t give up my hair dye, even though I knew it had fragrance. My patch test did not show a reaction to PPD, the active ingredient that causes most people problems, so I rationalized that the small exposure was worth the itch.

I’d been dying my roots since I was ~35 years old – that’s 10 years. When I was first diagnosed with allergic contact dermatitis, I started to pay close attention to what caused my reactions. My scalp definitely didn’t like hair dye. After each dye, my head would itch and burn. It wasn’t drastic, and it wasn’t anything I thought too much about – until last summer. That was the time I really noticed a reaction. The burning was getting more intense, and the itching was uncontrollable. I found myself scratching at my head all day – even weeks after using the hair dye. My family noticed it, too. It was time to try an alternative product.

I went back to the safe products list that my dermatologist recommended. It listed three products that I could safely use. I got online, and found one of them on Amazon. A few days later, it came in the mail. I starred at the package in disbelief. The packaging looked like something my mom would have used back in the 60’s.  I didn’t open the package, because I couldn’t bring myself to see what was inside.  It was a few weeks before I had to face that reality.

Over a month later, we were getting ready to leave for a family vacation planned. I decided to wait until the night before to use my new, plant-based hair color. That was a huge mistake!  I hadn’t opened the package, so I didn’t realize it was a 4-hour process. That meant, I would be up until midnight, and we were leaving first thing in the morning. Even worse, it was a 2-step process. I had to mix a powder with water, which resulted in a thick gooey mixture that smelled like marijuana. Then, I had to apply it to my head and cover it with a plastic bag for 3 hours.

After rinsing it out, I had to apply the second application, another powder mixture. I guess that was supposed to set the color. Honestly, I don’t remember all of the details. I remember crying, yelling at my family, and going to bed smelling like plants. I must have blocked out the rest.

The worst part of my new hair dye was that it didn’t work. My roots were not grey, but they weren’t black either. They were brown. I was miserable. I remember thinking that a burning, itchy head was way better than going through that procedure ever again.

I continued to dye my hair. Each time, the burning and itching got worse. I couldn’t see my scalp, but I could feel the scabs everywhere. I was constantly itching my head and picking scabs.They would break open, and the healing process would have to start all over again. It was horrible. Still, I continued to dye my hair. I also started applying a small amount of steroid cream to areas on my scalp. It didn’t make the wounds on my scalp disappear, but it seemed to help.

That went on for months. I had been waiting as long as possible between applications, giving my scalp as long as possible to heal. By this point, it was December, and time to dye my hair again. This time, I decided I would only leave the color on for 25 minutes. I thought, maybe that would reduce the reaction. Within minutes of applying the dye, my head started burning. This time, the burning was much more intense.  I remember feeling as if someone dumped acid on my head. My scalp felt like it was on fire. I dealt with it, waited 25 minutes, then washed it out.

The next day, I noticed liquid oozing from the side of my scalp, right above my ear. I separated my hair and noticed an area of red swelling. My scalp had been burned. I also found burns on the outside of my earlobes and at my hairline, around my face. What in the world was I doing to myself?

February 8, 2020 – Wake-Up Call #2

You would think, after my last experience, I would have stopped using my hair dye. But, I didn’t. Time passed, and even though my head was still itchy, I convinced myself that I would be fine. I feel ridiculous admitting it.

I waited weeks longer than usual to dye my hair again, but on February 8, 2020, I couldn’t wait any longer.  My grey roots were longer than ever.

This time, the burning didn’t seem as bad. I remember thinking maybe the extra time between applications was the solution. I left the dye on for 30 minutes, rinsed it out, fixed my hair, then helped Brian paint Mia’s room.

Later that night, I developed a horrible headache – the worst I ever remember having. I remember laying on the couch with a blanket over my face to block the light. I was reflecting on the day and remembered – paint is a source of formaldehyde, something I didn’t think about when I was painting. I figured my headache must be from the fumes. I took ibuprofen and went to bed early.

The next morning, I knew something was wrong. My hair was stiff and stuck together. So stuck, that I couldn’t run my fingers through it.  I ran to the bathroom to look in the mirror. My head had been burned and the wounds were oozing fluid into my hair. The fluid must have been seeping into my hair all night. I can’t begin to describe how gross my hair was. I immediately went into the shower to wash it. It hurt so bad to touch it. When I got out, I brushed my hair, and noticed all of the burns. They were still oozing, to the point that I had liquid dripping down the side of my face. I also developed burns on my face, all around my hairline.

The kids were at their dad’s house that weekend, and Brian was at the gym. I gathered some paper towels and sat at the kitchen table crying. What was I doing to myself?

Once I pulled myself together, I went in my office to work. I had a project that was due Monday, and I wanted to finish it so that Brian and I could watch a movie that night. My head continued to ooze as I worked, and I continued to wipe the fluid. Around 2:00, I went downstairs to check-in with Brian.  I can still remember the look on his face when he saw me. It was a look of terror. He starred at me and held that look for what seemed like minutes without saying anything.

“Babe, your head is swollen. Have you looked in the mirror?”

I remember standing there trying to process what he said. It was seconds, but it felt like minutes. I had looked in the mirror. And, I did notice something different. I even felt something different. My eyelids were starting to droop down over my eyes, blocking my peripheral vision. But, until that moment, I hadn’t thought too much of it.

I went upstairs to the bathroom to see it for myself. My forehead was smooth and the age line that I hate so much wasn’t there. The area around my eyes was swollen, causing the skin to slightly droop over my eyelids. That’s what I had been feeling. I went back downstairs. Brian wanted me to go to urgent care, but I said no. I knew they wouldn’t be able to help me. I decided to call my PCP instead. The answering service took my information and told me the doctor on call would be in touch.

The doctor called me back within the hour. I explained what was happening and waited for his advice. I told him I did not want to go to urgent care, and didn’t think I needed the ER. My biggest concern, was whether the swelling would travel down to my throat, and impact my breathing.  As you might guess, the doctor wasn’t going to give out prescriptive advice over the phone, without seeing me. He didn’t want to prescribe steroids until I was examined, just in case my burns were infected.  He did, however, say that the swelling was unlikely to travel to my throat.

The doctor did say, if I start to notice it doing so, I should immediately go to the ER. He then told me to call the office first thing in the morning, so that I could be seen in person.

As the day went on, the swelling progressed. The area around my eyes got worse and began impacted my vision. The swelling started traveled down my face and the wounds on my head continued to burn and ooze fluid. I went to bed that night praying that when I woke up, I would be able to see. Luckily, I could.

As soon as I woke up, I called the doctor, then went in a few hours later.  As expected, I was prescribed a high dose of oral steroids, which would be tapered over the next few weeks. We also had a long talk about why I hadn’t taken my previously prescribed allergy medication, and was told to follow-up with dermatology as soon as I could get in.

A few days later, I met with my dermatologist. She examined my scalp and told me it needed a rest. Her direction was to stop dying my hair for 6 months so that my scalp had time to heal. She also ordered lots of blood work, increased my allergy medication and suggested I get a more comprehensive patch test.

Letting Go And Learning To Love My Grey Hair

I knew I had to stop dying my hair –  I didn’t need a doctor to tell me. It was time. And, if I was going to do it, I told myself that I wasn’t going to go back.

After making my decision, I started researching women with grey hair. The more I looked, the more the idea grew on me. Turns out, grey is a popular hair dye color these days. Women are actually dying their hair grey. Having to shelter-at-home has made the process easier, too. Most days, I’m able to pull it back and not even look at it.  I guess the timing worked out good for me.

The last time I dyed my hair was February 8, 2020 – over eight weeks ago.  Every Sunday since, I take a picture so that I can track the growth. It’s growing on me, but I still get shocked on occasion when I catch a glimpse of myself in the mirror. I spent 45 years of my life with black hair. It was a huge part of my identity.

Last week, I emailed my 7 weeks of grey growth photo to my best friend.  I hadn’t shared a photo with her in about week 3, so there was a big change. I sat there waiting for her reply.

A minute later, I got her text. “Looks Bad Ass!” she wrote. A let out a huge smile from ear to ear. It was exactly what I needed to hear.

When you see photos or videos of me in the coming weeks, you’ll notice some grey hair. It’s not because I haven’t had time to dye it.  And, please, I don’t need help finding a new allergy-free black hair dye. I made the decision to let my natural color shine through. At 45 years old, that color is grey – and I plan on rocking that shit!

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