April 4. 2001
Hypersensitive to the world
By Britta Hansen - translated bt Bernard Miller
Most of us don’t even notice that we are living in a world full of chemicals. But Helle Kongevang certainly does. She has MCS – multiple chemical sensitivity – which can be described in Danish as multiform chemical hypersensitivity or chemical intolerance.
MCS is not an easy illness to live with and that’s putting it mildly,. It means that Helle Kongevang reacts to even the slightest trace of chemicals – and they can be found in air, food, clothing, the work environment, the home, and everything else we are normally surrounded by.
Just some of her reactions to chemicals can involve wheezing, memory disruption, rashes, headaches, nausea, and running eyes and nose. Helle Kongevang describes it as like having flu and overwhelming fatigue from even the slightest exertion.
Just as a reminder of all those things she cannot tolerate having in or around her, Helle Kongevang has produced a massive list of substances, materials, food, skin-care products and much else which gives her a range of symptoms. The list starts with turpentine, moves on to newspapers and effervescent pain-killer tablets and ends with common or garden tap water.
That all means that among other challenges, she always has to use special products from [Urtekram] (an ecological brand) to personal care, has to wash clothes with Tusindfryd detergent from Irma, eat organic food and filter her drinking water. And she is afraid of the day that her well-worn old carpet has to be replaced because it will either mean sanding the floors or buying exorbitantly priced pure wool carpet with a special filter underlay.
Friends fade away
When people come to Helle Kongevang’s home, they have to go through a major cleansing process because she cannot tolerate other people using creams, deodorants or washing powders with fragrance in. That’s why we had to conduct this interview by phone.
My husband has to take a shower and change his clothes as soon as he comes home from work. The friends we still have have either changed their detergent or they have special “Helle clothes” they put on to visit me. And they don’t use any fragranced products. “What’s more, they can’t smoke for the whole day before they come” explains Helle.
As a result many of their friends have faded away over time. And Helle Kongevang’s existence is generally very limited. When she goes out, she has to have a mask on, one like professional painters wear when they are working indoors. She can only wear it for a maximum of three hours a day – otherwise she risks a build up of fluid in the lungs. And there are other time when it can be difficult to [kapere] the limitations;
“My niece is celebrating her 18th birthday her in April – just ask whether I’m going. When my father celebrated his 70th birthday, I couldn’t even attend” states Helle.
You can’t track much whining in her. Helle Kongevang focuses mainly on what she can do:
“I can cook, bake bread and cakes, and everyone at my husband’s work enjoys eating them. And I have my computer. It’s my window on the world. On the internet I can talk with loads of people who are in the same situation as me and there’s room to breathe”.
Helle Kongevang has always suffered from chemical intolerance.
The battle for a pension
“Even as a baby I used to get rashes and stomach cramps from certain foodstuffs. And as a child I always reacted to things like paint and turpentine by simply turning round and walking away if I got anywhere near them. I was always sick as a child. I can remember bringing home my school report one year showing I had been off sick for 43 days during the school year. I was exposed to masses of chemical impacts. Goodness knows what they used to clean schools back then.
Throughout her working life which included a stint as a company secretary, she was exposed to vast quantities of chemicals, such as stripper, thinner and photocopier and printer toners. That’s what she guesses now that she knows that there is something called MCS. But Helle Kongevang only found out about that around 1994.
By 1992 she had already been forced to give up work because her body could no longer cope with the various effects. In March 1999 she finally got a diagnosis of severe MCS from Søren Vesterhauge, a senior doctor at the Rigshospital in Copenhagen.
Today Helle Kongevang is 44 years old. She’s fighting for an award of the top level of disability benefit but to date has only managed to get the standard higher level benefit. She has appealed to the decision to the Social Security Board.
“How can they say that I have any residual working capability? I can’t even be in the same room as a newspaper or with anyone who uses perfume. And I can’t work from home because my ability to concentrate and my stamina fluctuate so unpredictably and I sleep for amazingly long periods in the course of a day. I’d just like to see them find me a suitable job”