I’ve been telling my pals I’m gonna write a blog entry about Multiple Chemical Sensitivity soon, but have been avoiding it because I don’t like talking about it. But it feels like it’s time now, so I’ll give it a try! First, I just wanna say that this is not intended to be a comprehensive text or resource about MCS; I’m not gonna say everything that could be said about it. I can’t. It’s just a few of my own experiences, my own stories, offered as a contribution to the information already available, and I hope it’ll get folks to feel some feelings about accessibility, disability, and chronic illnesses. I also wanna note that I’m not gonna try to write this well, or eloquently, or anything, because I don’t feel like it. The subject wears me out.
I’d also like to note that many disability justice activists and artists have already been talking about creating scent-free spaces for years, with various perspectives – certainly before I knew it was a thing and took it seriously, and definitely before I developed a chronic illness myself. I’ve also been talking about MCS in zines and online for a couple years, but it’s a daily frustration (read all those links before you try to talk to me about it!), so I’m bringing it up again.
When I write about accessibility, I prefer to share my own feelings on how it feels to lose access to spaces many of my pals can take for granted, to become ill in spaces that I am meant to be a part of, that I want to be a part of, but often can’t. There is magic in disability, yes!, but much of my experience of disability involves loss and disconnection. I don’t wanna write anymore how-to guides or try to convince non-disabled people give a fuck about me. I’ve tried being mean about accessibility, and I’ve tried being patient and kind. I don’t know what else to try. So I’ll try this.
Like every other illness I have (I won’t write a list here, but I recently filled out some forms on which I was able to name fourteen diagnoses I’ve been given! Gosh!), MCS affects me in every moment, everyday, no matter where I am or what kind of headspace I’m in. I get sick and I get sick often. I didn’t always have MCS. I began to get sick from synthetic scents and cigarette smoke when I was in my early- mid-20’s, and it’s gotten progressively worse since then. When one has MCS, as well as various other disabilities and chronic illnesses, no space can be truly, fully accessible – often, not even our own homes, especially if we live in shared buildings or have roommates, etc. But we can work toward making spaces as accessible as possible!
Thanks to MCS, some of the places I get sick are: cafés, libraries, sidewalks, transit, 12-step meetings, theatres, concerts, readings, events, zinefests, parks, waiting rooms, bookstores, yoga classes, friends’ homes, and my own home. And that’s an incomplete list! Not everyone with MCS is allergic to the same things, or gets sick in the same way. Some folks are allergic to perfume and cologne; others are allergic to essential oils and incense; some folks with MCS are allergic to cigarette smoke, and others are smokers! Some folks will get sick right away when they come into contact with scents, others will get sick later.
For me, MCS does not operate on its own. It’s interconnected with my other illnesses, mental and physical. I have BPD, complex-PTSD, and fibromyalgia; among many other things, some of the physical manifestations of those conditions, for me, are fatigue, chronic headaches and migraines, and multiple chemical sensitivity. I like to think that my friends are conscious and knowledgeable about how to make spaces accessible for folks who’ve survived trauma, since so many of us have, but in my experience, MCS has almost never been taken seriously. My accessibility requests are inconvenient. People get miffed when you tell them scents make you sick! Like with so many of my conditions, I am just being “too sensitive.” And I don’t look sick enough, so it’s not real.
When I’m in a space where folks are wearing scents or smoking, I get nauseous and am unable to breathe, I have panic attacks, and I get a headache which often becomes a migraine, which leads to puking, weakness, and becoming bedridden, sometimes for days. I once had a four-day migraine that led me to ER. Sometimes scents can trigger traumatic flashbacks and dissociation. I keep a whole lot of meds and other fun things on me at all times, but it’s not always enough (and I’m on Disability, which covers some meds, not all them, and absolutely no other forms of treatment for physical and mental health conditions).
Losing access to spaces means losing access to friendship, connection, meeting new people, gathering with friends, experiencing performances and readings, supporting friends & artists, etc.; it leads to loneliness and isolation. If someone already has a mental illness that involves chronic feelings of emptiness, loneliness, and isolation, spaces becoming physically inaccessible will exacerbate those symptoms.
I’ve been losing my ability to walk for a few years. I’ve been using a cane for a year and a half, but sometimes I can’t walk at all. Sometimes when I’m walking, I look totally okay, like I’m not experiencing pain at all. Sometimes people tell me my cane is cute, and they think it is an affectation, not a real thing. Other times, I do look sick, and I have a great deal of trouble walking. Sometimes I crawl through my apartment or cling to the walls for support. I have collapsed in public, alone, more than once, and not been offered help. A couple weeks ago, I fell, and I curled up in a ball on a busy sidewalk with my cane by my side for nearly half an hour before anybody asked if I needed help. I never, ever look sick enough.
MCS becomes more difficult to navigate with a chronic pain condition, and an unreliable, unpredictable ability to walk. I’m not sure if I know anyone with MCS who doesn’t also have at least a few other health conditions to take care of, including chronic pain. When someone wearing scents enters a space I’m in, I can no longer rely upon the option of simply getting up and walking away (not that I should have to). If I stay or if I go, I will become ill.
I don’t expect the planet to become scent-free. However, it’d be cool if my pals made efforts toward creating scent-free spaces anyway, to offer us just a few hours of justice and accessibility in an inaccessible world; I might get sick on my way to your event, or on my way back home, but it’d be cool to have the experience of being in a space where my accessibility requests are respected, and where I can hang out with my friends without worrying too much about puking on them or having to leave and miss out yet again (or stay and miss out anyway because when I’m triggered by scents, I am barely able to focus on conversations going on around me or stay present anyway). And maybe this request could go beyond one-time-only events and become integrated into our daily lives.
If you’re holding a scent-free event, it’s important to have a plan in place for if/when folks arrive wearing scents anyway (I’ve never, ever gone to a scent-free event where every single person was scent-free! And I’ve gone to scent-free events where the organizers were wearing scents!), and it is not up to folks with MCS to implement this plan; we’re gonna be busy trying not to puke, so someone else will have to approach them with the ol’ accessibility policy and ask them to wash off their scents or leave, okay? And I don’t want to judge anyone, or shame anyone, but I also don’t always have the patience to explain to folks why accessibility matters, and why their feelings about how very difficult it is to respect disabled folks’ accessibility needs don’t matter to me. That’s what “allies” are for.
And this is a fine time to note that you might as well become an ally (as much as I hate that word, and must remind you that it’s a verb, not a noun) now, because you will certainly become disabled at some point in your own life, and you’ll join my side of the struggle, trying to convince your pals that your experiences are real.
P.S.: If you’ve benefited from my writing in any way – if my words have inspired you, helped you feel less alone, or sparked some weird feeling within you; if you’ve felt encouraged, or curious, or comforted – please consider compensating me by offering a donation of any amount. Whether you’ve been reading my writing for years, or just stumbled into me this afternoon, I invite you to help me sustain the process!