When scents become dangerous:
Her hair is cut outside
by Arne Sorgenfrei (translated from Danish)
photo by Britt Lindemann
Jette Frederiksen is proud of her ability to see the positive side of everything. She has enough limitations with her MCS: A minute amount of perfume sends her into a week-long poison reaction.
You have to interview me outside, she starts. Right to the point and without any trace of seeking sympathy.
The temperature is near freezing, but Jette Frederiksen is used to taking her precautions when she meets new people, regardless of the weather, or others’ sensibilities. If other people wish to spend time with her, they’ll have to adhere to certain fundamental conditions.
She later even asks what laundry product I use. I respond: “Just a regular one, Omo, I think.” “That won’t work. I will pass out, even outside. Then it’s best we do it over the phone,” she replies.
So we did that. The photography had to be done in person, but then Jette can use her respirator most of the time. That is her life line when venturing out in public.
The 43-year-old woman from Gadstrup near Roskilde, Denmark, has now been stricken with Multiple Chemical Sensitivity (“MCS”) for ten years, to the degree she has been awarded the highest level of disability pension by the government social agency.
She is hypersensitive to a whole basket of smells, foods and chemical compounds and must live a life which would make most people descend into a deep depression.
Jette does admit that it was hard to accept it the first years, when the illness developed to the point that a normal life was no longer possible.
“I had the feeling that life was at its end. I had no contact with anyone outside my family for a whole year. It was very lonely.”
“But I am equipped with a very strong sense of survival. I have learned to find something to be happy about every day, to focus on what I can do, instead of what I cannot”, she says.
The center of her life is her husband Finn (46), whom she has been happily married to for twenty years. And their two children, Michelle (18) and Marc (15).
Finn recently made her very happy by saying “it is a small price to pay for our marriage that I cannot use fragranced deodorant.”
“I know the family must live with much larger limitations than that”, comments Jette. But her community has been amazing. The parents of some of her children’s friends have changed their laundry products, so their children can visit. Some staff members at the local grocery store are fragrance-free and the manager has removed the fragrance dispenser from their restroom.
“And my hairdresser, Lotte’s Hairdesign, cheerfully cuts my hair outside and does not put on any fragrances that day. Things like that probably only happen in a small town like ours.”
Jette is convinced that her disabling hypersensitivities are inherited. Many in her family have been stricken with asthma and allergies. She didn’t notice any problems herself until 1993.
“In those days, I was kitchen manager for a Rudolf Steiner institution and slowly realized that I became sick when around fragrances and fabric softeners. I had asthma attacks, red eyes, heart trouble and shortness of breath. When I stayed away from people, the symptoms disappeared.”
“I wondered about it, but thought it was just in my mind.”
Jette did go to her doctor and brought along bottles of perfume, but all that happened was a slight irritation. The symptoms first really showed up once she was home again. Still, she just thought it probably wasn’t anything to worry about. But the symptoms continued and got worse. Then Jette also became allergic to foods she ate.
“Nobody really believed me, not even myself. It was probably something psychological, I told myself.”
No matter what she ate, she would get diarrhea, throw up and cough. Her life became more and more unbearable. “Fortunately, a friend who is allergic to chromium told me to go to a specialist and have a skin test. I did, and the doctor was surprised to see that I reacted to both chromium, nickel, fragrance, formaldehyde and cobalt.” Later, she went to another doctor, who determined that she was allergic to eighteen types of food and four food colorings. A special diet helped her feel better. At that time, they had already converted their home to be allergy-friendly, because of their daughter’s allergies. No carpets, only furniture in solid wood, glass and steel, with leather upholstery. The radio and TV were free of flame retardants, which is pure poison. She used fragrance-free laundry detergent and almost all cleaning was done with a fragrance-free dish soap.
She also removed all flowering plants, bought bed linen in pure cotton without formaldehyde and ate mostly organic food. All bread was baked at home.
Today, Jette Frederiksen has full blown MCS. A doctor told her recently that for most people in her situation, things would continue to go downhill. But she now has contact with a German treatment center, which she has great hopes for.
“My daily life is very limited. I wear a mask when I need to go shopping. The least exposure to fragrance sends me home with severe symptoms, which can last up to a week and turn into muscle spasms, even in the jaw, memory loss and inability to concentrate.”
“I can’t tolerate places that are recently painted, normal candles, alcohol, tobacco smoke, the odor of garlic, shoe polish, curry, gasoline, plastic trash bags, cardboard, etc.”
“I still have a good quality of life, especially because of my family. I make sure to spend much time with them and keep myself active. To have something to be grateful for every day. I read newspapers over the Internet because I can’t tolerate the ink fumes and I am now in contact with others who have MCS. That has expanded my social network a lot.”
“I have not been in my childhood home for two years. My mother smokes, so I can only visit her outside, as the smoke hangs in her clothes. I have not seen my brother for two years, but have made peace with that.”
“On the other hand, I have found new friends whom I can hike or bicycle with. And talk politics.”
“I always focus on the positive things I can still do. And live with what I can’t. The most fantastic thing is all the people who help out so I can have a life outside the home. The other day, I was allowed to bring my own tomato sauce (without garlic) to the local pizza parlor and throw my own pizza. Such experiences make me happy. They make my day nicer,” says Jette Fredericksen.
This article was first published in the 2004/8 issue of the Danish weekly magazine SĮNDAG (www.soendag.dk). Translated and republished with permission.