MCS Awareness Month / Fragrance Sensitivity

May is national MCS (Multiple Chemical Sensitivity) month.  Briefly, MCS is defined as suffering “multi-system illnesses as a result of contact with, or proximity to, a variety of airborne agents and other substances.”

According to MCS-America, MCS affects over 48 million men, women and children of all races.  There are many substances that affect those with MCS, some of which include fragrances, cleaning products, laundry products, air fresheners and scented candles, secondhand smoke, pesticides, paints, solvents, certain foods, preservatives, beauty and personal care products, etc, etc.  Symptoms can range from mild annoyances to life-threatening reactions.

As I wrote in my previous posting about Human Canaries, I am a person who is highly sensitive to low levels of fragrances and chemicals.  They make me very sick and I could be debilitated in bed for at least a couple of days after an exposure…and an exposure could be as simple as getting a whiff of someone’s perfume or walking by an air freshener.

FRAGRANCE SENSITIVITY

The remainder of this post will focus mainly on fragrance sensitivities, which is a part of MCS.  Studies are suggesting that fragrances are becoming an increasing concern in general, and definitely for me because of its increasing prevalence.  There are more and more fragranced products that are available, and more products where the fragrance is designed to last longer (as I have seen in commercials for certain laundry products).

Health Concerns

Research has discovered a number of toxic and undisclosed chemicals in fragranced products.  Prior to the 1970s, perfumes were primarily made from natural ingredients like flowers and herbs.  However, perfume formulations have since changed.  Today, perfumes are over 90% synthetic.  These fragrances can contain up to several hundred chemicals, many of which are toxic even at low levels and can be dangerous when inhaled or applied to the skin.  Low levels can accumulate and small exposures over time can lead to health problems.  Common fragrance chemicals have been found to be toxic to the neurological, respiratory, immune, and endocrine systems.  The skin is the largest organ in the body and absorbs chemicals, which can affect other organs in the body.   Also, according to the American Academy of Dermatology (AAD), fragrances are considered a leading cause of contact dermatitis.

Fragranced Products

Fragranced products are widely used in homes, businesses, institutions, and public places.  Some that are of concern include:

  • Laundry products – detergents, fabric softeners and dryer sheets
  • Scented candles and air fresheners
  • Personal care – soap, shampoo, hairspray, gels, lotions, sunscreen, deodorants
  • Perfumes, powders, oils
  • Cleaning supplies

Environmental Impact:

Fragrance chemicals enter and persist in the environment.  They have been found in the air, soil, water bodies and drinking water, and are difficult and costly to remove once they have entered the environment.

Fragrance Regulation:

The fragrance industry is mainly self-regulated.  No law in the United States requires disclosure of any ingredients in a chemical mixture called “fragrance” even if the chemicals are toxic or carcinogenic.  Depending on the type of product, the word “fragrance” may not even need to be listed.  Certain regulated products only need to list “fragrance” or a similar term, as an ingredient, but not the ingredients that make up the fragrance, even though an individual “fragrance” can contain up to several hundred chemicals.  Generally, consumer product ingredients are exempt from disclosure, some of which are protected as “trade secrets.”

Alternatives

There are many resources on the internet that include healthier and environmentally responsible alternatives.  Here are just a handful of suggestions:

  • Choose products without fragrance, scent or perfume.
  • Help institute or suggest a fragrance-free policy at work in consideration of those who are sensitive and become ill.
  • Baking Soda – a versatile natural cleaner, scourer, odor absorber, deodorizer, and is a natural fabric softener and deodorizer when added to the wash water prior to adding clothes.
  • White Vinegar – another versatile natural cleaner, grease cutter, stain remover, removes mildew, odors, and is a natural fabric softener, deodorizer and reduces static cling when added to the wash or rinse water
  • Lemon – has effective antibacterial qualities and can dissolve all sorts of grime.
  • Use better ventilation and consider plants that absorb and reduce odors, rather than using a potentially toxic air freshener that masks the odors but does not clean the air.
  • Hydrogen peroxide – for cleaning
  • Fresh coffee grounds – absorbs odors
  • A natural or organic ingredient, or essential oils do not always mean it’s safe.  Some can be harmful and emit hazardous chemicals.  (Some natural plant smells alone that make me very ill are lavender, gardenia and stronger fragrant flowers.)

Remember, being “clean” does not have a smell, and changing just one thing is a positive step to a healthier environment and healthier living.

Consideration for people with sensitivities

Even for those who do not experience any reactions to chemicals, fragrances, allergens, etc., or do not notice their existence, we might consider healthier alternatives for our own sake, the environment, and for those whose lives are greatly altered and tormented by their presence.

Please be considerate and respectful of those who say they are noticing a fragrance, chemical or allergen that is making them ill, whether it is something wafting in the environment or a product being used by someone they are with.  It is a very real problem for us and leads to loneliness and involuntary (or necessary) isolation from relationships and activities that we so much want to be a part of.  Personally, my doctor said my only option is to avoid any of my irritants called fragrances and chemicals.  Health should be a top priority.  Judgmental reactions and criticisms do not help.  Some people are so debilitated from what many would consider low or unnoticeable levels that they have had to resort to near total isolation to protect their health. I believe this is the case with some of my blogging friends who have MCS.

Friends, family and others who are considerate, respectful and even stand up for us as an advocate shows us that we are important to them, and that we matter.  What an important and necessary feeling to experience!

You Matter

Here is a closing thought to consider:  When you genuinely matter to someone, they will always be there for you.  No excuses, no lies, no broken promises. 

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Human Canaries and Friendship

In addition to many of the health issues I’ve talked about in this blog, one of the major conditions that has increasingly affected my daily life is my extreme sensitivity to fragrances and certain chemicals.  People with sensitivities like me, and others diagnosed with “multiple chemical sensitivity (MCS)” are referred to as “canaries.”  We are human canaries.  The name “canary” comes from a past practice of miners who would take the birds into the mines with them as an animal sentinel, to provide advanced warning of danger.  Canaries are more sensitive to toxic gases than humans, so if the bird stopped singing, got sick, or died, the miners would know they needed to escape the mine or use protective gear before they were affected.

Low levels of fragrances and chemicals that most people probably wouldn’t notice, will make me very sick, so sick that I could be in bed with debilitating migraines, intense sinus pressure and pain, nausea and vomiting for a few days.  This includes perfumes and colognes, scented candles, scented lotions, air fresheners, scented laundry products, personal care products, even some flowers, etc.  Almost anything that contains fragrance, and some cleaning chemicals, solvents, paints, etc., will affect me.

I don’t know why I am sensitive.  I’ve seen doctors and specialists about this.  My specialist said that the only thing I can do is to avoid fragrances and chemicals as much as I can.  With me, it is an “irritant” and irritants need to be avoided.

I don’t know if there was an initial exposure that started this sensitivity, but I wasn’t always sensitive.  It started in my mid-twenties with a few perfumes and gradually escalated over the years to the point where low level exposures or even one whiff of a certain fragrance will make me very ill.  Right now, given that the “why” is unknown, the “why” to me is not as important as the fact than “I am” sensitive and need to make significant adjustments in my life and choose my health.  Other health issues themselves are already isolating enough, but fragrance and chemical sensitivities make it even worse.  This problem affects many decisions I make, and my social life is very limited.  Some of the decisions I’m faced with frequently are:

  • What products I buy – from household cleaning products to soaps, lotions, makeup, etc.  They need to be “fragrance free” or “unscented.”
  • What stores, restaurants or other establishments I visit – Will there be air fresheners, scented candles, or too many fragranced people?
  • What public events I attend – Is it indoors or outdoors?  Outdoors is better with fresh air.  In the last few years, I haven’t been able to attend events that I enjoy, like family get-togethers, ballets, musicals, concerts, parties.
  • What volunteer or other community service activities I get involved in.
  • Who I can be around and who I can socialize with – Will they be wearing fragranced products around me?
  • Whose car I ride in.
  • Who rides in our cars – Hubby has had to “de-fragrance” our vehicle when people wearing fragrances have ridden with him.
  • Whose home I visit – Do they apply perfume, use air fresheners or other scented products?
  • Who can enter my home – I have to be strict about who enters where I live.  It is the only place where we can make it safe for my condition.  Fragrances, especially many scented laundry products these days leave lingering fragrances, especially in upholstery, for several days or weeks.  Sometimes I have to leave my home and stay with my mother while hubby “de-fragrances” it.
  • What home projects hubby can work on and when – Most likely I will have to leave the house if chemicals are involved.
  • When I can go outside –Smells from fragranced laundry products emitted from neighborhood dryer vents trigger a reaction.
  • Who my “true” friends are – True and caring friends will help you.  They will be considerate, respectful and nonjudgmental of your sensitivities if they value a relationship with you.

Chemical and fragrance sensitivities is a growing problem, and it is concerning to me to learn about the types of ingredients that make up many fragrances these days.  I will post more about this later.  Over ten years ago when I was searching the Internet for information and resources, I came across only a couple of websites with passing mentions of the problem.  Now, when you Google “fragrance sensitivity,” “chemical sensitivity,” “multiple chemical sensitivity” etc., there seems to be endless hits.

For those of us who live with this kind of condition, it is real.  It’s not all in our heads.  I will post more information in the future.  But for now, here’s a question to think about (inspired by blogs from two MCS sufferers, Sherri Connell and Linda Sepp).  If a friend or loved one mentions that a certain fragrance or chemical around is making them ill, even if you are the one using a fragranced product, what would you do?

Would you choose the product?

Fragrance - Choosing the Product

Or

Would you choose the friendship and try to help get your friend away from the problem, or make yourself and your home safe when you are around your friend, regardless of the type of sensitivity they have (food, flowers, environmental, electromagnetic, etc.)?

Fragrance - Choosing Friendship

Here are a few fellow bloggers I know of who live with similar sensitivities.  If you or someone you know is struggling with chemical or other sensitivities, please feel free to share your experiences in the comments section or let me know if you/they have a blog.

Support and Encouragement

Friend
A Friend, a photo by Fergiemoto on Flickr.  (click on photo to enlarge)

.
True friends and family fly to you when you don’t have the ability to fly yourself.  They support, comfort and encourage you physically and emotionally.  ~ Fergiemoto

Finch (right):  “I’m so discouraged.”
Junco (left):  “I’m there for you.  How can I help?  You can talk to me…I really mean it.”

Remember that close friends and relatives struggling with chronic/invisible illnesses or pain need us to be there for them.  Here are some ways to show support and encouragement:

  • Slow down.  Listen with your whole body and 100% of your attention.  Look at them and acknowledge you are truly hearing what they are saying.  To the person talking, this is more valuable than all the gold in the world.  Never underestimate the power of holding the space for someone who needs a listening ear. You may be their life-line.
  • Let them know you are truly there for them and that you are listening.  Silence when a person needs to know someone is really there can lead them to feel lonely.
  • Avoid interrupting them while they are talking.  Let them finish speaking before you respond.  When you are talking, you are not listening.
  • Allow the person to feel just as they are.  Avoid judgment, lecturing, criticizing, ridiculing, etc.  Telling them to tough it out, quit complaining, pull it together, they have a low pain tolerance, they’re crazy, it’s not a big deal, or threatening to stay away can lead to negative results.  Sometimes the pain inside is much more intense than the pain they are showing.
  • Be there with them, physically and emotionally.  Don’t try to fix it. More

Addressing Emotional Pain #1

”Tears expand you, they don’t diminish you.” ~ Michael Ondaatje
“We are expanded by tears, not reduced by them.” ~ anon

I’ve learned many important things about pain, physical and emotional, in my various treatment sessions over the last year and a half.  I will share more of them here and in later postings.

If you experience pain, have you heard things like:  “It’s all in your head.”; “It’s psychological.”; “You have a low tolerance for pain.”; “You’re not handling pain very well.”; “Pull yourself together and quit complaining.”; “Tough it out.”; “Quit crying.”;  etc.

If so, how did that make you feel?  Did you feel like it was an attempt to minimize what you are experiencing, or that the person didn’t care about how you were feeling?  In my opinion, those and similar statements would hinder communication and trust at a time when support and encouragement are needed.  Did you feel like you were weak and that you needed to be a “stronger” person?  Read the quote at the top of this post again. More