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.

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8 responses to this post.

  1. This is interesting. You bring up a good point. No one can tell you whether your warm or cold in a room. No one can tell you whether the drink you have is too hot or too cold. No one could tell you whether you like your steak rare or well-done. There is so much we consider relative or subjective.

    I guess the “psychosomatic” symptom sufferers — and people who are hypochondriacs in general — have jaundiced things for everyone. But when I was a kid, they had tests to determine your allergies. Why isn’t there some way of objectively determining whether someone is an MCS sufferer or not?

    Interesting post. Brings up a lot to think about on both sides of the argument.

  2. “…when I was a kid, they had tests to determine your allergies.”

    And that’s the main problem. MCS isn’t allergies. Allergies are indicated by a specific antibody that shows up in the bloodstream. This antibody isn’t present in MCS, that’s why they call it a sensitivity, rather than an allergy. Hopefully one day they’ll be able to find a marker, but for now we have only symptoms to go by, as far as I can tell from my Internet research.

  3. Posted by Mason on October 25, 2008 at 8:56 pm

    There is no barrier between your nose and your brain. Your olfactory nerves are part of the brain, and run right into your nose.

    MCS is considered a neurological disorder.

    Basically, your brain is in direct contact with many toxic gasses every day. It is assumed the brain gets ‘overwhelmed’ with too many toxins and can cause numerous amounts of symptoms.

    This could be a very bad thing for those big chemical companies, much like the health risks attached to cigarettes. Often, they fund research to disprove the existence of MCS or other chemical injuries.

    It’s sad that people are suffering, and the numbers of afflicted are growing.

  4. Posted by Kathy on November 6, 2008 at 7:16 pm

    Sherri – I want to Thank You for your explaination above. Until I saw that segment on GMA I had no idea what has been wrong with me for the past 10 years – I just knew my life as I knew it came to halt. I have told my husband for years I need to live in a bubble just to feel healthy. I smiled with a tear when I read about the lady next door to you doing her laundry … same here and so much more. It has been so hard on me, my family & friends who have no idea what I go through. I have a bunch of research to do to learn more. Again, Thank You!!!

  5. Kathy,
    Your comment means a lot to me.

    When you figured it out, after watching the segment, didn’t it feel like the sun came out from behind the clouds? And then after you realized the imlications, did it feel like a giant walked up to you and cast a deep shadow?

    Another commenter linked to her blog, http://scentfreesavvy.wordpress.com, which deals with the same topic. She’s been doing this longer than I have, so you might want to go to her blog for some of your research. Good luck to you!

  6. Posted by Kathy on November 6, 2008 at 9:20 pm

    Sherri,

    I did go to the site – it appears to deal allot with scented items etc. – Just with living with this for 10 years I only buy unscented laundry, bath etc. stuff – I was so pleased to find Raid came out with an unscented Ant Killer – I also have major problems with which way the wind blows on many days – the air can be so toxic to me, especially about the same time each afternoon (3:30) I have trouble breathing and I get so weak I just want the day to be over.

    Hope you don’t mind new best friend thing here – but it feels great to be able to talk to someone about this.

  7. lol, no problem! You get it off your chest. Maybe you should start a blog, too, if you don’t already have one. 🙂

    I’ve invited a couple of people to write their stories so I could put them in a guest post, but they didn’t take me up on it. I extend the same invitation to you, if you like.

  8. Posted by scentfreesavvy on November 8, 2008 at 12:44 am

    Kathy,

    I want to clear any misconception about my http://scentfreesavvy.wordpress.com. I originally co-wrote a blog entitled http://fragrancefighters.com. My new site in no way encourages scented items. I have many friends that also have this same challenge. I have found that we are all different and some persons can tolerate different kinds of scents such as products that smell like chocolate or foods. I gave an experience about a scented product that I have been exposed to such as my daughter’s doll. I can tolerate very little scents/fragrance products. My challenge is to find products that are natural/organic which are fragrance or scent free. Even these products have some odor or have essential oils in the ingredients. I’ve found that many products that are labeled fragrance free and unscented have chemicals which are masked with another chemical made to be fragrance free or unscented. The challenge is great but I think if share our experiences we can navigate this overly scented world. One more thing … about the ant killer product, even though it is unscented you may still have symptoms from the chemicals in the product. Thanks Sherri for allowing me to comment.

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