– MCS: The Isolated
The link below is to a PDF of an academic study entitled “Isolation and lack of access in multiple chemical sensitivity: A qualitative study”. If you have MCS, you already know what it’s going to say about the life you’re forced to lead, but you may find it worth sending to friends and family so you can stop having to explain so much.
If you don’t have MCS, then reading this may help you to better understand, and to spread the word, of what it is like to be chemically sensitive (or chemically intolerant) in our world today. That’s increasingly important because of the large and growing number of people who suffer from MCS: formally diagnosed in North America = roughly ten million; “prevalence rates” (i.e., suffering but lacking a formal diagnosis) according to another study = nearly 40 million.
Given these numbers, if you don’t have MCS you may wonder why you don’t know more of these people. That’s basically what the attached article is about: the spatial and relational restrictions of people who have MCS. The article is only five pages long, but it’s in somewhat dense academese, so I’ve copied some quotes below to give you a sense of the life.
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Some quotes from “Isolation and lack of access in multiple chemical sensitivity: A qualitative study“:
MCS develops as a result of exposure to ongoing low-level or a single high dose toxic exposure and includes symptoms encompassing multiple organ systems, including respiratory, digestive, neurological, cardiovascular and musculoskeletal. Chemicals often described as negative triggers are pesticides, paint and fragrance. Other commonly cited triggers include formaldehyde, new carpet, diesel exhaust nail polish/hair spray, cleaning products and tobacco smoke
A safe space is a precursor for face-to-face interaction and was described by informants as a constant challenge because of required precautions and difficulties in gaining access to venues where relationships are formed and maintained. As a result, movies, theaters, buses,weddings and, sadly, work are off limits for those who cannot tolerate every day chemical exposures.
Informants emphasized that the challenge of space is constant and never ending. Even disability agencies were described as unsafe and even if environments seemed safe, people had to be ever vigilant for changes that would render them unsafe. These changes could be as simple as someone arriving wearing perfume, a neighbor painting a house, delivery of perfumed mail, or an idling car spewing exhaust pollution. Fragrance seemed to be the major determinant of whether a place was off limits. Even a change in wind direction could pollute a previously tolerable space, thus the fragility of accessible spaces.
Respondents explained that they didn’t “really have a life anymore” and that “you just can’t go anywhere anytime for just any reason. Basically, we are homebound and if you do have to go out and get nauseous it takes you 2 or 3 days to get back on your feet.”
People explained that they were sometimes so desperate for services or interaction that they risked entering unsafe spaces: “sometimes I just go places and get sick anyway and come home and recover, because you know humans aren’t supposed to be isolated.” Because others were not privy to the sometimes extended recovery period required after a simple outing, they lacked information regarding the true impact on the respondent.
“People with MCS still encounter inaccessible buildings on a daily basis, and the barriers they face, in the form of toxic chemicals, are as inhibiting to them as multi-story buildings without elevators are to the person who uses a wheelchair”
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End of quotes. For the article itself, click the following:
“Isolation and lack of access in multiple chemical sensitivity: A qualitative study”
