You don’t know how I feel

On Good Morning America I saw a report about a lady with MCS who built a shed on her property as a trigger-free zone. It’s made of metal and contains only metal and glass objects and blankets made of organic material. A judge ordered the woman to remove the shed because they didn’t get building permits or inspections.

I’m not arguing about the legal aspect of the story. What upset me were some of the comments calling this woman, and by association all MCS sufferers, insane. To me, it smacks of the medieval folks’ belief that disease was caused by evil spirits, simply because they didn’t know about germs yet.

It’s simple. We are surrounded by synthetic chemicals; thousands of new ones are manufactured every year. MOST of these chemicals are not studied on the human body before they are introduced into products meant for mass-consumption. In fact, a lot of the chemicals we are exposed to in everyday products such as perfume and air fresheners are known carcinogens. It boggles my mind that more people are not at least considering the connection between rising chemical exposure and rising rates of autism, asthma, ADHD, depression, and cancer.

Some naysayers point to lack of research in the area of MCS as proof that it doesn’t exist. A flawed argument. A couple of people said that in a study they read (but didn’t provide the link) that certain MCS sufferers were exposed without their knowledge to substances to which they claimed sensitivity, but incurred no reaction.

First of all, if the study was real, I concur that their symptoms may have been psychosomatic. That changes the nature of their illness, but not of mine, and not of all MCS sufferers. When the symptoms come first, all other treatments have failed, and removal of certain substances relieves the symptoms, that’s about as empirical as a person can get outside the laboratory.

When I’m having a bad sinus day, I might suffer for several hours wondering why, then go outside and realize it’s my neighbor’s laundry day. Her dryer vents right between our houses, and the smell of the dryer sheets she uses hangs in the air. After this happened several times, it became clear to me that the fragrance chemicals seep into my house in low enough concentrations where my nose can’t detect it but my sinus tissue is still irritated by it.

Something that non-MCS sufferers might not know is that the effect can be very subtle. So subtle that even the sufferer herself may not attribute her slight headache or reduced cognitive ability to the trigger. It’s extremely difficult to measure the reactions, because it’s more of a quality of life thing than a yes/no thing. And the triggers can be widely varied, as can the reactions, plus we’re normally exposed to many substances at once so it can be hard to separate them. I could easily see where a person with MCS might attribute her symptoms to a red herring trigger.

Formerly doubted illnesses like chronic fatigue syndrome, fibromyalgia, and depression are now recognized by the mainstream medical community, and I’m certain that as more and more people come forward, MCS will be widely accepted as a legitimate illness. Still, as with the aforementioned diseases, there will always be those who believe other people don’t know how they feel.