What’s it Like to Have MCS/ES? Part 1: Arms, Brains, and Legs

MCS/ES (multiple chemical sensitivities / environmental sensitivities)  is a disability recognized by the Canadian and Ontario Human Rights Codes. There are over a million people with doctor diagnosed MCS in Canada, and so many more all around the world.

The term ‘sensitivities’ seems to trivialize the condition in many people’s minds.

You may wonder what’s it really like then, if it’s not trivial?

‘have legs or brain some days but not others’

 

Having MCS/ES can be like having legs some days but not on others, and we can never predict when we’ll have legs, on what days we’ll have legs, or for how long they’ll last before they disappear again.

And just like we don’t know when we’ll have them or for how long we’ll have use of them, we won’t know when they’re gone, if they’ll be gone for an hour, gone for a day, gone for a week, a month, or a year, or even if they will ever come back.

Sometimes, only one or the other will come back, and only for a while.

When we want to do something, we have to plan ahead. We have to take into consideration all the possibilities and variables required to manage any of the situations or levels of ability/disability that we might encounter, and then often have to manage them while having the cognitive capacity of a fumigated peanut.

While we can predict some exposures and take actions to minimize the harmful effects, we just have no way of predicting if or when we will be exposed, where all of the exposures can come from,  and what exactly we’ll be exposed to, (even at home) because of what other people do and use, or what chemicals and residues come with the things we need to have in order to survive.

Even when we take all the precautions we can, we can be subjected to toxic chemicals and other harmful exposures from anywhere, because health harming levels are currently allowed in virtually all everyday products and materials, and many fragrance-free and other harm reduction or accessibility policies exist only as wallpaper, instead of being properly enforced.

That’s how much control most of us have *sorry, don’t have* over the exposures that disable us. And then we’re expected to smile and speak in complete polite sentences while doing cartwheels backwards through hoops to have some of our needs met without being assaulted in the process.

Until society changes to one where everyone’s health and well-being are more important than access to and use of harmful products, having access to safe housing (air, water, food, clothing, bedding, appliances, etc), in areas where all probable  exposures are banned would be a big help.

This would allow people with MCS/ES to heal, and to have some predictability and stability in ability levels, which allows people to be more independent and even constructive in daily life.

Unfortunately, in our society, systemic discrimination and accessibility barriers    currently exist for people with disabling MCS/ES, adding many levels of cruel insults to injury.

Regarding my description above, we could exchange legs for brain, or parts of the brain, or functions of the brain, or lungs, or digestive system, or any other body system and function we were designed to have, and many of these systems can be affected at the same time, depending on the exposure or combination of and duration of exposures.

 

1999 Consensus Definition Criteria:

1. MCS is a chronic condition.
2. Symptoms recur reproducibly.
3. Symptoms recur in response to low levels of chemical exposure.
4. Symptoms occur when exposed to multiple unrelated chemicals.
5. Symptoms improve or resolve when trigger chemicals (incitants) are removed.
6. Multiple organ systems are affected.

Multiple Chemical Sensitivity: a 1999 Consensus.
Archives of Environmental Health. 54: No 3, May/June 1999; 147-149.

Additional Symptoms Distinguishing MCS Cases from Controls:

-having a stronger sense of smell than others
-difficulty concentrating
-feeling dull or groggy
-feeling spacey

McKeown-Eyssen GE, Baines CJ, Marshall LM, Jazmaji V, Sokoloff ER. Multiple chemical sensitivity: discriminant validity of case definitions. Archives of Environmental Health. 2001; 56(5): 406-412.


Other symptoms and exposure effects can be seen here: Symptom Lists
(many of the symptoms from the different conditions listed are experienced by people with MCS/ES).

Can you share your way of describing what it’s like to have MCS/ES?

 

 

 

10 responses to “What’s it Like to Have MCS/ES? Part 1: Arms, Brains, and Legs

  1. Having MCS means never knowing when you can manage something as simple as making toast.

    • Can’t stand up due to pain.
    • Can’t figure out all the steps involved to make toast. #execfun
    • Can’t muster the strength required to pull 2 pieces of bread off the frozen loaf.
    • Could make toast but accidentally bought more butter instead of bread because all you could remember while you were at the grocery store was the PIN for your ATM card… so you have butter, frozen peas, shortbread cookies, and oatmeal. But no bread for toast.
    • Did make toast… found it stone cold, 4 hours later.
    • Would love some toast but guts are violently ejecting all food and drink after a lil run in with an air “freshener”.
    • Could physically make toast but am literally gasping for breathe, so really no appetite.
    • Too. Exhausted. To. Chew.
    • Migraine. Barfing. Please don’t even mention food.

    This isn’t even all the toast run-ins we could and do encounter in a day. There’s also a lot more to life than toast. I don’t even have a toaster because finding safe consumer goods (and affording them, ha!) is a full time job.

    Imagine having the flu, for forever.

    How good does your brain work? How jovial do you feel? How many groceries can you carry home in a knapsack? You gettin’ lots done at work while in your delirious stupor on the couch? Can you even follow this episode of Parks & Rec?

    Oh you feel a lil better today? Gonna finally do some dishes and eat something other than soup? Sure, sure! Maybe tackle some of that mountain of sweaty flu laundry? All well and good for 22 minutes. Then your heart rate skyrockets, the fever comes back full force, and you can barely make it to a horizontal surface before you collapse into a lump of passed out human.

    “Trivializes” indeed. I think most people would lose their minds coping with this, especially while experiencing this relentless violence from “friends” and “family” and strangers alike, when we have the audacity to mention that an exposure that will create Toast Chaos is happening.

  2. Right now, I feel the scorn of others because I am not a normal, fully capable person who is able to tolerate toxic environmental exposures that in others’ eyes do no harm; except they do not recognize that it is real for them too, yet not enough of a body burden to cause serious symptoms that would force them to figure it out.

  3. julieinlovelyoregon

    I started calling it “Multiple Chemical Sickness” instead of Multiple Chemical Sensitivities quite a while ago to make people take it seriously.

    Of course no one “gets” it – until they get it. I moved to the Oregon Coast where the air could not be fresher or healthier.

    ~julie~ ________________________________

    • It is hard to understand especially when people don’t want to.

      I’d prefer multiple chemical injuries… I’m not a fan of using sickness, because it implies we are the problem instead of the (mostly man-made) things in the environment that disable us.

      Symptom Profile of Multiple Chemical Sensitivity in Actual Life

      Objective: This study was conducted to confirm the definition of multiple chemical sensitivity (MCS) in actual life: that multiple symptoms are provoked in multiple organs by exposure to, and ameliorated by avoidance of, multiple chemicals at low levels. We used the Ecological Momentary Assessment to monitor everyday symptoms and the active sampling and passive sampling methods to measure environmental chemical exposure.

      Conclusions: MCS patients do not have either somatic or psychologic symptoms under chemical-free conditions, and symptoms may be provoked only when exposed to chemicals.

      From the Department of Psychosomatic Medicine (M.S., H.K., K.Y., T.K.), Graduate School of Medicine, The University of Tokyo, Tokyo, Japan; the Educational Physiology Laboratory …

  4. I had a medical procedure done yesterday and although I always put “Extremely sensitive to fragrances” under Allergies on my paperwork, I was attended to by a nurse wearing a fragrance. I don’t know if this was a coincidence or somehow caused by the exposure, but the nurse was unable to get a usable vein for the IV. Another nurse (fragrance free) was finally able to get the IV in. The original nurse returned to complete the prep. When I was almost ready to be taken to the OR, I asked for oxygen because, by then, my throat was so closed I could hardly speak (ONE of my symptoms.) I was told I’d get it when I was in the OR, which I did. Daily life is not only a challenge when living with MCS but getting needed medical care is an even greater challenge because so few (especially medical personnel) in the U.S. are aware of it.

  5. I’ve been living with MCS for almost three decades and been recently been officially diagnosed as having such. The diagnosis means I can move forward for additional benefits ( I live in Canada} but also means I can make more of a statement for people like us. I will try to scream as loud as possible and continue to fight to have doctors not dismiss this hideous disability and to have it recognized in WHO as a global condition. Please help me scream by petitioning WHO. Thank you, Nancy Donovan

    • Hi Nancy!

      I do believe there was a petition that didn’t get very many signatures… I vaguely remember I shared it on this site some years ago. It might even still be open for signatures.

      Seeing how little support that got, I think other strategies may have better results (but don’t ask me what).

      I’m currently looking forward to seeing the Environmental Health Task Force’s final report, which was due to be finished this month. I’m not sure when it will be made public. The interim report was released by the previous government here almost 3 months after it was finished, so hopefully we’ll see it before the end of April.

      Check out the interim report if you haven’t already read it… (use the search box at the top right of this site to find my post as well as one from the Chemical Edge).

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