Welcome to My MCS Life

For those who don’t know, MCS stands for “multiple chemical sensitivities,” a rather unfortunate term which has often branded its sufferers as “special snowflakes,” hypochondriacs, and misfits. “Environmental illness” is another broad term, often abbreviated EI. And you may often seem these terms used together as EI/MCS.

BlkPinkmcs_logo
From a hat sold by the Environmental Health Network of CA, http://www.ehnca.org. I was a board member and president back in the 90s.

I wish I could convey to you what it means to have this condition–one which results in years and even decades of partial or even total social isolation–in times like these, a time of massive, world-wide (but hopefully temporary) “social distancing.” Linda Sepp does an excellent job of this in two of her recent Seriously Sensitive to Pollution blog posts: Dear Quarantined and Socially Distanced and Two Tales: Temporary Quarantine or Long-term Segregation. As she states in Two Tales:

“Many other people are worried about having to stay at home for a couple of weeks, without access to their regular activities, because they have never had to think about what it’s like, but some of us (indeed millions around the world) have been forced to stay confined and isolated, sometimes for most of our lives! Our stories are seldom told, and when they are told, they’re often dismissed as anomalies and quickly forgotten.”

Please note that such isolation is usually not just social, but also economic, medical, spiritual, familial, recreational, and educational. We fucking know how hard this is–but unlike the rest of you who do not have this or other chronic illnesses or disabilities– there will be no return for us to what most people consider a socially normal way of life.

In fact, it will be even harder for us. With the uptick in the use of heavy cleaning products and germicides in all public places, including grocery stores, we MCSers are well and truly fucked.

I’ve had 30 years of dealing with EI/MCS, and periods of partial isolation. During the last four years, while living in semi-rural areas, I’ve had long stretches where I haven’t seen a living soul besides my cats for days and weeks at a time. There have been many weeks when a grocery store clerk has been my only in-person interaction. I am heavily reliant on the internet and social media.  Loneliness is now known to be more detrimental to health than 15 cigarettes a day. Just think about that. Think about us. 

It’s airborne toxins which are the main problem for most of us. I can’t access disaster shelters (in a region known for several fires a year) or senior centers due to widespread use of fragrances and scented personal care products, combined with heavy cleaners. I’ve had to give up exercise classes, forego the comraderie of senior lunchs and the local UU as well as a fraternal organization that promised me scent-free accommodation at meetings and then didn’t honor that promise. Yes, I have a private practice but it is very part-time in this rural area. I could use something a little more regular in this gig economy (and I know that goes for millions of other people besides!). I’ve tried to educate, I’ve complained, I’ve asked for equal access, and I’ve cited studies–all for naught.

And my home, which is my environmentally clean safe space, is not always “free from contagion.” The choking fumes from heavily scented detergents, coming from my neighbor’s washing machine (located in an outdoor driveway) often seep into my house. Another neighbor will sometimes gun a motorcycle engine or leave a car running for several minutes at a time. I smell that in my house too.

Read The Reaction To Coronavirus Is Making Some Chronically Ill People Angry, and I’m One Of Them by Kelly Wynne (Newsweek, 3/13/20). No, we don’t want the rest of you to suffer–either from Covid-19 or from the kind of isolation that is new to you–but dammit, we’d love to have just a smidgeon of attention for our plight too, and some TLC and some scent-free social services, before the rest of the world goes back to their toxic business as usual.

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One thought on “Welcome to My MCS Life

  1. My Dad finds the people struggling to self-isolate hilarious. He has pretty much lived in self-isolation for the past 24 years due to his mental health, and no-one was trying to help him cope with that. He’s laughing, but I’m pretty sure he’s actually really angry…
    I’m lucky that my husband believes me when I tell him what makes me ill and tries to help. I don’t bother telling anyone else. I’ve had enough of being called a drama queen 🙄

    Like

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