Multiple Chemical Sensitivity (MCS) is a complex condition that can be difficult to explain and a challenge to understand.
It’s best to take it at face value without trying to read between the lines or nitpick every little detail.
I am not a medical professional. I’m simply someone who’s lived with MCS for many decades.
During many of those years my MCS is/was very severe. I’ve also had periods of time where my MCS wasn’t quite as bad.
But I can’t remember a time when my MCS was completely gone.
I can’t remember a time when I could live and participate in society like a normal human being.
In this article I’ll be sharing my personal experience and knowledge (as I understand it) about living with MCS.
My experience should not be compared with anyone else’s. Nor should their experience be compared to mine.
MCS Has Many Names
MCS may also be referred to as Environmental Illness (EI), Sick Building Syndrome (SBS), Chemical Intolerance (CI) or 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 an allergy but the easiest way I’ve found to explain it is…
I have mild to severe allergic-type reactions to environmental toxins and pollutants.
The toxins or 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 substance.
The type of reaction and the severity can be inconsistent. Depending on the body’s current toxic load, this week’s reaction may be worse than last week’s reaction or visa versa.
Reactions can occur almost 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 A 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
I react to other toxins as well but, when you look at the list above and really really think about where I’d come into contact with these things, you’ll soon realize that anywhere in the modern day world holds the potential to cause a reaction.
The items listed above are the commercialized, chemical-based version (which is what most people use and this is why going anywhere in public can be hazardous).
When it comes to my own personal care… I use chemical-free versions – often home-made.
What Type of Reactions Do I Have?
Many people have Multiple Chemical Sensitivity reactions and don’t even know it.
That little headache you get when your around perfume or cleaning products is a reaction!
My reactions can 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.
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
- The Red Mask
Some of these reactions are life threatening (like breathing).
Other reactions seem minor but when you pile one minor reaction on top of another on top of another … it can become more serious.
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.
During one of my worst reactions… my daughter told me the mask was purple.
People have told me that the Red Mask is Lupus. I’ve been tested for Lupus and my results were borderline (right on the line of Lupus vs not Lupus). I have several other auto-immune conditions as well as many food allergies and food sensitivities. All of these conditions can also cause a Red Mask. Sometimes I don’t know the cause of the mask but, at this point, does the cause really matter?!
Pet Peeve Alert! I Can’t Always Smell It
I need to address a pet-peeve of mine and clarify that I can’t always smell the toxic substance.
Additionally, it is NOT the smell that causes the reaction.
The reaction is caused by a toxic-to-me substance that I touch, ingest or inhale – whether the substance has an odor or not.
What Determines The Severity Of A Reaction?
Over the years I’ve learned that there are many factors that go in to the severity of a reaction. For me, a few of those factors are:
- 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: Toxins build up in the body (your toxic load). As toxins build-up, the severity of the next reaction can increase.
- When I’m sick: When I have a cold, infection or other illness my MCS reactions tend to be worse.
- Auto-Immune flares: I have some auto-immune conditions and when I’m having a flare my MCS reactions are significantly worse.
My unprofessional theory is that the immune system plays a big role in the severity of my MCS reactions and/or how quickly I recover from a reaction.
The Cure For Multiple Chemical Sensitivities
Early on in my long MCS journey I was sent to Allergist #1 who had me taking a crap-load of allergy pills along with nose sprays, eye drops and inhalers.
The first thing Allergist #1 did was prescribe a handful of allergy pills. When that didn’t work he added more.
When that didn’t work he doubled the doses.
Then, Allergist #1 moved out of the area and I was sent to Allergist #2 who, eventually, wanted nothing more to do with me.
I was basically banished and I don’t have a clue why. The office quit making appointments for me and wouldn’t return my call.
But, for me, allergy pills do NOT help.
The only way to avoid a reaction is to avoid what causes it. Period.
I do my best to avoid toxic-to-me substances. This has helped reduce reactions but I’ve never been able to fully reach a point where I can live normally in the modern day world.
How My Multiple Chemical Sensitivity Began
My Primary Care Physician helped me find an Alternative Care doctor who, after a detailed history of my life events, said I was most likely born with a this condition.
I had minor reactions as a baby but, as the years went by, my reactions progressively worsened until I could no longer live normally in the modern day world.
How could I be born with this?
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 if it 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.
Growing up, I thought all the weird little rashes and strange reactions to every day items were normal. How was I to know my reactions weren’t normal!?
I could have lived with these minor reactions and would never have known any different. But, in 1990, MCS began seriously affecting my life.
1990 was one of several pivotal points in my life where my Multiple Chemical Sensitivity symptoms worsened.
Back in 1990, we put new carpeting in our living room, dining room, den and up the stairway.
I didn’t know it at the time but this toxic exposure pushed my system too far over the edge. I was in my mid-20’s and life as I knew it would never be the same.
Life With MCS
Since 1990, as my symptoms have worsened. I’ve had to become more and more secluded from society in order to avoid severe reactions.
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.
There was a point when I blamed MCS for stealing my life from me and causing all my problems.
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.
After a multitude of pity-parties, whining and plummeting deeper into the bottomless pit of hopelessness and despair… there came a time when I decided I would NOT let MCS break me.
Emerging from the bottomless pit of hopelessness and despair was grueling. But I was determined to find a way to live a better life with M… C…. S…
An Alternative Lifestyle Reveals Itself
My daughter (Nikki) took her 8th grade trip in the teacher’s RV (it was a very small school).
When Nikki came home from the trip, she excitedly talked about traveling in the RV and insisted we get an RV of our own.
At first, I ignored her suggestion because I was definitely NOT a camper. I don’t do bugs and I don’t poop in holes!
In her excitement, Nikki also mentioned we could live in the RV.
And then… I had a light-bulb moment!
The Nomadic Lifestyle
After much research and deliberation, I decided a nomadic lifestyle would be the best way for me to live with MCS.
I couldn’t decide what type of home on wheels I wanted so I chose to start my nomadic lifestyle out by living in a cargo van and I’d add a safe-for-me travel 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 my home on wheels is, if the neighborhood becomes too toxic I can pack up and leave a lot more easily (and less expensively) than I could when I lived in a house or apartment.
My nomadic lifestyle has it’s challenges (as any lifestyles does). But, this lifestyle has brought great freedom in terms of living more comfortably with MCS.
This is a lifestyle I never would have considered if I didn’t have Multiple Chemical Sensitivities.
Years ago, I blamed MCS for stealing my life from me.
But I was wrong.
MCS wasn’t stealing my life from me – it was giving my life to me.
This life altering condition stripped away a life I wasn’t meant to live and nudged (or shoved) me towards the life I live today.
My nomadic lifestyle began as a necessity… little did I know it was also my dream!