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Getting to the Point: How to Effectively Communicate MCS

 

 

 

 

MCS America

Lourdes Salvador's Column

...Co-founder of MCS America discusses the latest Multiple Chemical Sensitivity issues.

 



 

 

 

 

 

 

 

Lourdes Salvador volunteers as a writer and social advocate for the recognition of multiple chemical sensitivity (MCS). She was a passionate advocate for the homeless and worked with her local governor to provide services to the homeless through a new approach she created to end homelessness. That passion soon turned to advocacy and activism for people with MCS and the medical professionals who serve them. She co-founded MCS Awareness in 2005 and went on to found MCS America in 2006. She serves as a partner for Environmental Education Week, a partner for the Collaborative on Health and the Environment (CHE), and a supporter for the American Cancer Society: Campaign for Smokefree Air.

 

For more information visit MCS America

 

 

 

Monday, October 26th, 2009:

 

Getting to the Point: How to Effectively Communicate MCS

 

by Lourdes Salvador

 

 

One of the most frustrating aspects of multiple chemical sensitivity (MCS) is the lack of understanding and acceptance of the condition by those around the person with MCS. Often, people with MCS are subjected to well-meaning, but ignorant, comments that can be deligitimizing and hurtful. Comments may take the form of unwanted advice, insults, and simple disbelief.

 

Learning how to respond to these comments, educate others, halt abusive insults, and diffuse unwanted advice can be the difference between healthy adjustment and despair. There are several response approaches which each serve a different purpose. The approach selected depends largely on whether one wants to diffuse a situation, end the conversation, or engage in educating someone about MCS.

 

Humor

Humor displays an overall good attitude, a point of strength. Humorous responses can also be used to toss a misplaced comment back at another person in a funny way that gets a point across.


Scientific
In some situations, it is most desirable to simply diffuse the comment in such a way that the commenter is unable to respond. This is useful when one is not feeling well, has no resource for humor, lacks time, or does not wish to engage in long explanations.

 

Educational
Educational responses attempt to help the commenter to understand the truth about MCS and what causes it. These are often the most difficult responses because they take considerable time and energy in discussion. It is engrained in most people that consumer products are safe. Breaking through the barrier of understanding why one person is affected when “it doesn’t bother me” can be difficult. Despite the difficulty, educational approaches are the most fruitful so far as spreading the word and enlightening the world. This method is a must for friends, family, co-workers, and others a person has regular contact with.

 

Snappy
Another method that acts to diffuse a comment is the snappy response. This may involve a slightinsult designed to embarrass the other person into silence. This response is not particularly effective with anyone with whom a good relationship is desired. However, this method can be useful in cases where total strangers make inappropriate or insulting comments.


The most important thing is to never try to explain or defend oneself. Doing so only results in an argument where each person tries to prove they are right. Turning the conversation to the other person instead of yourself is an extremely effective diffusing mechanism. These kinds of encounters can leave victims feeling abused and misunderstood. If you walk away from the encounter smiling and suppressing a giggle, you’ve done well for yourself.

 

The following tidbits are some typical comments and suggested responses for each of the approaches.

 

"But I don't smell anything!"


Humor- Try inhaling!

 

Educational – In MCS, the blood brain barrier leaks. Since chemicals enter the brain rapidly through inhalation, a leaky blood-brain barrier allows them to enter the brain and be detected at much lower levels.

 

Scientific - You’ve been psychologically habituated to it through cognitive conditioning.

 

Snappy – Maybe you should see your doctor about your inability to smell?

 

“Do you think if you just used some perfume again, you might get immune to it and not notice it so much?"

 

Humor - You are absolutely right! When I stop breathing and go unconscious, I don’t care a bit!

 

Educational - Perfume is made up of nearly 5,000 different unregulated chemicals. Less than 20% have been tested for human safety. Perfume has been linked to various health effects.

 

Scientific - The chemicals in perfumes may act to upregulate the nitric oxide and peroxynitrite cycle of biochemistry.

 

Snappy – Would you not notice rat poison less if you kept ingesting it?

 

“Take an allergy pill” (Epi Pen, allergy shot, etc.)

 

Humor - Gosh, why didn’t my doctor tell me that 20 years ago when I got MCS? You’re brilliant!

 

Educational - MCS is not an allergy. Allergies are abnormal responses to harmless substances which can be treated by medications. MCS is triggered by toxic substances which actually poison the entire body.

 

Scientific - MCS is a toxicological disorder which is not mediated by immunoglobulin E.

 

Snappy – Please show me your medical license or give me your social security number and address so I can have my lawyer contact you for practicing medicine without a license.

 

“If it’s real, then go to the doctor and get it fixed.”

 

Humor - If I were a simple car, my doctor would the best darned mechanic in the world!

 

Educational – Curing medical conditions is virtually unheard of. When someone is poisoned, the treatment is to remove the poison and avoid future exposure.

 

Scientific - Before a doctor can attempt to “fix” xenobiotic induced neuroendocrineimmune deregulation, the patient must remove all xenobiotics from the environment.

 

Snappy – Go to college and get your ignorance fixed.

 

“You should try (yoga, going to church noni juice, therapy, etc).”

 

Humor - It’s always been my goal in life to be a well-adjusted and relaxed, disabled person.

 

Educational – Those are coping mechanisms, not treatments or cures for MCS. They won’t help reduce toxic reactions.

 

Scientific – Please provide me with copies of peer-reviewed, journal-published studies supporting the efficacy of these interventions.

 

Snappy – May I see a copy of your medical degree so I can turn you in for practicing pseudo science?

 

“Just don't think about it.”


Humor - Ignorance is bliss… ‘til I die of exposures anyway.

 

Educational – Consider a roach sprayed with pesticide. Most reasonable people would agree that a roach does not think the way humans do and is not intelligent enough to realize it’s been sprayed with a lethal poison. Even though the roach isn’t thinking about it, it still dies.

 

Scientific – Xenobiotics have the same effect on living organisms whether or not the organism is cognizant of their presence.

 

Snappy – Consume a lethal dose of rat poison and don’t think about it.

 

“You don't look sick.”


Humor - Thank God! What a relief!

 

Educational – People with cancer don’t look sick either, but they still suffer and die. It’s like a ripe piece of fruit that looks great on the outside, but is being eaten on the inside by maggots.

 

Scientific - The glutathione S-transferase genes control hepatic detoxification. In people with MCS, certain genetic variations slow hepatic detoxification.

 

Snappy - You don’t look blind and ignorant.

 

“Aren’t you all better by now?”


Humor - In my mind, thoughts, and convictions!

 

Educational – MCS is a lifelong toxic injury for which there is no cure. Like an amputee, we learn to live with our disability.

 

Scientific - The glutathione S-transferase genes control hepatic detoxification. In people with MCS, certain genetic variations slow hepatic detoxification.

 

Snappy – Aren’t you educated by now?

 

"It doesn’t bother me, so it shouldn’t bother you."

 

Humor - Can I test some rat poison on you then. I’ve been wondering if it would bother me.

 

Educational - Similarly, sugar doesn’t bother most people, but can be deadly to diabetics.

 

Scientific – In people with MCS, certain genes which regulate the break down of toxic materials are deleted. The glutathione S-transferase genes control hepatic detoxification.

 

Snappy – Fresh, clean, healthy air doesn’t bother me, so it shouldn’t bother you.

 

"Why can't you get your olfactory nerves cut?”

 

Humor - All the less to smell you with my dear!

 

Educational - The olfactory nerve brings the sensation of smell to the brain. Removing it does not make toxic substances less poisonous. In fact, it would make a person less able to protect themselves by removing the ability to identify potentially toxic substances through smell.

 

Scientific - Cutting the olfactory nerve can not alter the toxicological properties of xenobiotics.

 

Snappy – Why can’t you have a lobotomy?

 

“I'm only wear a little bit of perfume.”


Humor - Do you put a little bit of rat poison in your drink every day too?

 

Educational – In MCS, the blood brain barrier is damaged. Since perfumes enter the brain rapidly through the olfactory nerve and contain ingredients on the EPA toxic waste list, the lack of blood-brain barrier protection allows them to be detected and have effects at very low levels.

 

Scientific - The glutathione S-transferase genes control hepatic detoxification. In people with MCS, certain genetic variations slow hepatic detoxification.

 

Snappy – Maybe you should see your doctor about your inability to smell?

 

“It's all in your head.”


Humor - What a relief! Wait ‘til I tell my doctors that they’ve got it all wrong!

 

Educational – Actually, you are partially right. The chemicals in fragrances do disrupt normal brain function. Lab studies have confirmed that common fragrances contain toxic ingredients and induce acute toxic effects.

 

Scientific – SPECT scans have shown that fragrances reduce perfusion, essentially starving the brain of life sustaining oxygen in people with MCS.

 

Snappy – Please give me your social security number and address so I can have my lawyer contact you for practicing medicine without a license.

 

 

 

For more articles on this topic, see: MCSA News.

 

Copyrighted 2009 Lourdes Salvador & MCS America

 

 

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