COVID-19 and Multiple Chemical Sensitivity: Thoughts on a survey
The Environmental Health Association of Québec (ASEQ-EHAQ) recently sought volunteers to complete a survey “as part of [their] research study on the impacts of COVID-19 health measures on the quality of life of adults with Multiple Chemical Sensitivity (MCS)”. Having suffered MCS for many years, I felt ready to reflect on my experience.
Much of the survey asked about how cleaning and sanitizing procedures and products have affected respondents’ access to the workplace, health care, and other services, and their quality of life in the COVID era. A number of questions asked about our experience with seeking accommodation for the condition – such as requesting safe, scent free spaces, products, or social arrangements.
As MCS is a recognized disability under the Canadian Human Rights Act, the needs of those suffering from it should be accommodated, as with any other disability. People with MCS are vulnerable to a range of common chemicals, many of which are found in personal, cleaning, laundry, and medical products (including now ubiquitous hand sanitizer). For us, exposure to many chemicals – even at levels readily tolerated by others – can result in a range of debilitating impacts, from trouble concentrating to headaches, fatigue, and muscle weakness, often lasting for hours to days, or even longer. My own reactions include confusion, irritability, and even panic, and I have a hard time explaining what is happening – which has led to a few less than stellar social (and professional) performances.
I sometimes request accommodations, and often these are fairly well received. My immediate neighbour stopped using dryer sheets at my request; my co-working group adopted a scent-free policy; if I need to give the lab a blood sample, it is now done on my porch (for a fee).
But some of my requests have not been so well received, and have strained relationships with neighbours, friends, and even family. As a result, most of the time I don’t actually seek accommodation for my condition.
One reason is that it’s impractical to request a scent-free experience at Shopper’s, on a train, or in an elevator. In these cases I can try alternatives – shopping online, driving, taking the stairs – or “bite the bullet” and risk suffering another exposure, and its consequences. But often I simply don’t want to ask for accommodation.
One of the survey questions asked me why I would make that choice. The reasons suggested reflected potential emotional and social repercussions of seeking accommodation. A few examples:
- Fear of reprisal (verbal, emotional or physical abuse)
- Fear of insulting people
- Fear of being stigmatised
- Fear of losing friends
- Fear of losing family
- Fear of losing professional support (doctor, dentist, nurse, lawyer, etc.)
- Fear of losing respect if people think I am difficult (friends, family, professionals, etc.)
Though centered on fear, these options also indicated potential consequences, many of which I’d realized in my own experience. Still, I felt the options a bit narrow, as my requests for accommodation have also involved a good bit of sadness, disappointment, embarrassment, stigma, and shame.
But still, as I read and agreed with one statement after another, a light went on in my brain.
I realized that I have been suffering these fears (sadness, disappointment, shame) for years, and along with these emotions, an anxiety that weighs on virtually every social interaction life offers.
That anxiety centers on a recurring decision: do I let people know about my condition, and ask for accommodation (thereby risking rejection or ridicule); do I try attending the event (ready to use my avoidance tactics, but risking panic, illness, and/or having to abandon the event anyway); or do I just skip it (and thereby risk only disappointment – my own and others’ – along with the foregone professional and social experience)?
Every indoor social event or interaction – and many outdoors – holds these options for me. Attending a neighbour’s birthday; meeting with clients; renewing a driver’s license; shopping; a protest march; my daughter’s grade 6 graduation. And each opportunity is loaded with the anxiety of having to choose among undesirable actions: either face the challenges of seeking accommodation; or attend, and risk an exposure; or stay home, and miss out.
The survey thus made clear to me something I’ve experienced under COVID restrictions: since I’m not expected to show up in person, I don’t need to ask for accommodations. And it’s an enormous relief.
Moreover, many in-person events have moved online; and even when there are events, the choice to stay home is generally supported. Under COVID, the whole field of anxieties associated with face-to-face interactions with MCS has been wiped clean.
I feel better, mentally and emotionally, than I have in years.
Don’t get me wrong; I fear COVID and its impact on our lives, and I am devastated by the suffering and loss so many are experiencing, especially among health care workers and the elderly. But I also appreciate those aspects of our reaction to this pandemic that speak of slowing down, of focusing on essentials and making do with less – and the growing recognition that we can, by and large, make do with a lot less than we used to think we needed. For me, the social adaptation to the pandemic resonates with less expectation, and less pressure to be anything but the mere humans we are. This includes a space for my MCS-induced social distancing, since staying home is no longer so weird, but is understood as a safe and quite rational way to conduct oneself.
Of course, the lack of visitors, the closed coffee shops and bookstores, the missed concerts and dinners and kids’ graduations… there’s a real loss there. I’ve got to tell you though: a little bit of me is saying, though not in a snide way, “now you know how I feel”.
You see, when MCS really hit me – my moderate MCS became severe following an exposure to mould in 2016 – my life outside the home virtually stopped. I started working almost exclusively from home, stopped visiting or having visitors, avoided public transit, dreaded shopping, and yes, I wore a mask regularly in public. My social life consists in walking my dogs. When COVID restrictions arrived, I was pretty much already there, in my self-imposed lockdown.
All the lost activities, all the resentment toward restrictions, all the fear of illness: because of MCS I’ve been dealing with this for years. So, I have to suspect one element of my relief is that, with the normalization of physical distancing and much of the world experiencing lockdown, I just don’t feel so awfully alone in thisanymore.