Multiple Chemical Sensitivity (MCS) is a complex condition. MCS can be difficult to explain and a challenge to understand.
I am not a medical professional. I’m simply someone who has lived with MCS for many decades.
There were many years when my MCS is/was very severe. I’ve also had periods where my MCS wasn’t quite as bad.
I don’t fully understand why the severity ebbs and flows but I can’t remember a time when my MCS was completely gone. Nor can I remember a time when I lived and participated in society like a normal human being.
In this article I’ll share my personal experience and knowledge (as I understand it) about living with MCS.
MCS Has Many Names
MCS may also be referred to as:
- Environmental Illness (EI)
- Sick Building Syndrome (SBS)
- Chemical Intolerance (CI)
- Gulf War Syndrome (GWS).
There may be other names I’m not currently aware of and it wouldn’t surprise me if the name changes again.
What Is MCS? The Simple Explanation
Multiple Chemical Sensitivities is not a true allergy but the easiest way I’ve found to explain it is…
I have mild to severe allergic-type reactions to environmental toxins, substances and pollutants.
The substances I react to are commonly found in the modern day world.
About MCS Reactions
A reaction can occur from touching, ingesting or inhaling the fumes of a toxic-to-me substance.
The type of reaction and severity can be inconsistent. It’s not uncommon for today’s reaction to worse than last week’s reaction or visa versa.
Reactions can occur instantly or they can be delayed. Delayed reactions make it difficult to determine the cause.
Everyone with this condition is different. One person may react differently than another person or they may react to different substances altogether.
What Causes An MCS Reaction?
In my case, I react most severely to:
- Perfume / Fragrance
- Hand sanitizer
- Air fresheners
- Petroleum based products
- Building materials
- Synthetic fabrics
- Cleaning products
- Laundry products
From the list above it could be concluded that anywhere in the modern day world holds the potential to cause a reaction.
The items listed above are the commercialized, chemical-based versions. Many people use the chemical-based version which is why going anywhere in public can be hazardous.
Products I personally use are homemade or the chemical-free versions.
What Type of Reactions Do I Have?
My reactions range from mild to severe.
My worst reaction brought me to the brink of anaphylactic shock.
It was later determined that pesticide was the cause of my anaphylactic reaction (my Dad sprayed his porch with Raid the day before I went to his house for Thanksgiving).
A few of the most common allergic-type reactions I have are:
- Watery eyes
- Burning eyes
- Runny, stuffy nose
- Brain fog
- Inability to think straight
- Breathing difficulty
- Joint pain
- Muscle aches
- The Red Mask (see below)
- Potential anaphylaxis
- And so on
Some reactions seem minor but when you pile one reaction on top of another on top of another the seriousness can escalate.
The longer I’m exposed to whatever is causing the reaction the more severe my reaction will become.
About the Red Mask
Sometimes my face gets very red. It looks like a mask across my cheeks and nose. The mask often precedes an MCS reaction and gets worse as the reaction increases.
During one of my worst reactions my daughter told me my face was purple.
People often say my Red Mask is Lupus. I’ve been tested for Lupus and my results were borderline. I have other auto-immune conditions in addition to many food allergies and food sensitivities. Per one of my Doctor’s, all of these conditions can cause a red face.
What Determines The Severity Of A Reaction?
As stated above, I don’t fully understand the ebbs and flows of my reactions. But, over the years, I figured out a few things that seem to be contributing factors:
- How long I’ve been exposed to the toxic substance: The longer I’m exposed, the worse I get.
- What the toxic substance is: Some toxins cause worse reactions than others (like pesticides and laundry products).
- Other toxic substances I’ve recently been exposed to: To my understanding, toxins build up in the body (this is called your toxic load). As toxins build-up and the toxic load increases… the severity of the next reaction can increase.
- When I’m sick: When I have a cold, infection or other illness my MCS reactions are worse.
- Auto-Immune conditions: I have some auto-immune conditions and when it’s flaring up… my MCS reactions are significantly worse.
My unprofessional theory is the immune system plays a role in the severity of my MCS reactions and/or how quickly I recover from a reaction.
Is There A Cure For Multiple Chemical Sensitivities?
Early on in my long MCS journey I was sent to Allergist #1 who immediately prescribed oodles of allergy pills, nose sprays, eye drops and inhalers.
When that didn’t work he added more.
When that didn’t work he doubled the doses.
I was taking a double dose of multiple allergy medications because he insisted it would stop my reactions.
Allergist #1 moved out of the area and I was sent to Allergist #2.
Eventually, Allergist #2 wanted nothing more to do with me.
Without warning, Allergist #2 banished me and I have no clue why. The office quit making appointments for me and would not return my calls.
The bottom line is, allergy pills, nose sprays, eye drops and inhalers did not help nor prevent an MCS reaction.
The only way to avoid a reaction is to avoid what causes it.
I do my best to avoid toxic-to-me substances and it’s helped reduce reactions.
The Severity of My Reactions Ebb and Flow
As mentioned earlier, the severity of my reactions can ebb and flow.
Sometimes I can participate (in society) a little more than other times but I’ve never been able to fully reach a point where I can live like a normal person in modern day society.
After decades of living with MCS… I know when I’m ebbing, I know when I’m flowing, I know my limits, I know my warning signs and I take heed.
This has become my normal.
How My Multiple Chemical Sensitivity Began
An Alternative Care doctor who, after a detailed history of my life events, said I was most likely born with a this condition.
Before I was conceived, my mom underwent a slew of medical surgeries and treatments – including radiation – for a strange illness she came down with after a car accident.
I’m not sure if the car accident caused her condition or aggravated a condition she already had.
My Alternative Doctor suspected that, when I was conceived, the chemicals used in my mom’s treatments and surgeries were not fully out of her system and it affected my fetal development.
I had minor reactions as a baby and, growing up, I thought all the weird little rashes and strange reactions to every day items were normal. How was I to know they weren’t normal!?
I could have lived with these minor reactions and would never have known any different but, in 1990, it all went downhill.
The Pivotal Point – The Decline
Mid-1990 was a pivotal point in my life.
At that time, I didn’t even know I had MCS.
But things escalated after getting new carpeting in the living room, dining room, den and up the stairway.
My symptoms severely worsened and I’ve never been able to return to my pre-1990 normal.
Making Matters Worse
The carpet smell was very strong.
To make it smell nicer in the house, I placed a couple of Glad Plug In’s around the house. In hindsight, this probably added to the problem!
I had many strange symptoms including random nose bleeds, uncontrollable coughing fits, eyes watering, trouble breathing, extreme fatigue and more.
Soon, I began having reactions at work, while in the store and most anywhere in public.
This toxic exposure must have pushed my system too far over the edge.
I was in my mid-20’s.
Life as I knew it would never be the same.
Life With MCS
Since 1990, in order to avoid severe reactions, I’ve become more and more secluded from society.
Escaping from the modern day world isn’t an easy task and knowing I can never fit in with the normal strides of society can be depressing.
My entire world changed…
- The people I assumed were my friends left me in the dust.
- Attending public events often caused a serious reaction.
- Going to the store for basic needs was like navigating an impossible obstacle course.
- Dreams of travel were squashed because hotels can be too toxic.
- My world began closing in on me, becoming smaller every day.
- Even my own home had the potential to cause a serious, life threatening reaction.
I can’t say that I never felt frustrated, defeated or downright depressed.
It would have been easy to just give up and let MCS take me but, as a single mom, I couldn’t give up and bail on my daughter.
I decided I would NOT let MCS break me.
I was determined to find a way to live a better life with MCS.
An Alternative Lifestyle Reveals Itself
My daughter, Nikki, took her 8th grade trip in the teacher’s RV. She attended a small, private school. Due to economic decline, her class had dwindled to 4 girls.
When Nikki came home from the trip, she excitedly talked about traveling in the RV and insisted we get an RV of our own.
I was NOT a camper. I don’t do bugs and I don’t poop in holes!
My motto was “The only place you’d ever find me camping was the nearest Holiday Inn!”.
But, due to MCS, the nearest Holiday Inn was no longer an option.
In her excitement, Nikki said we could live in the RV.
Sometimes it takes me a while but, once Nikki’s comment sunk in, I had a light-bulb moment that changed the course of my life!
The Nomadic Lifestyle
After some research and deliberation, I decided a nomadic lifestyle might be the best way for me to live with MCS.
I wanted to travel but hotels are usually too toxic. I’ve moved from one house or apartment to another – trying to find a place that wasn’t too toxic.
Maybe a home on wheels was the answer.
I started my nomadic lifestyle living in a cargo van with the option of adding a safe-for-me trailer later, if I wanted.
My cozy little home on wheels allows me to see and do things I never thought possible.
Another perk of a home on wheels is, if the neighborhood becomes too toxic I can pack up and leave more easily (and less expensively) than I could when I lived in a house or apartment.
The nomadic lifestyle has it’s challenges (as any lifestyles does). But, this lifestyle has allowed me to travel while avoiding toxic-to-me hotels. It also allows me to be more in nature – where the air is fresh and healing.
I still don’t poop in holes but I’ve learned to tolerate bugs (or at least scoop them out the door if they happen to come inside).
I can’t say how long I will live full-time in a home on wheels but I currently enjoy living nomadic.
And to think, this is a lifestyle I never would have considered if I didn’t have Multiple Chemical Sensitivities.