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?
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
-feeling dull or groggy
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?