ASEQ-EHAQ

Does Anyone Care
Renée Gabrych

Lack of accommodation for a disability
Ginger Major

I am tired of living in hell
Olly Gabrych

Housing Crisis for People with MCS
Line

The Stolen Life
S. Shepherd

Dead But Alive
What is sensitivity to chemical products (MCS)?
Sylvie Haché

Nowhere to Run, Nowhere to Hide
Muriel Létourneau

When Life Becomes a Nightmare
My story of living with multiple chemical sensitivities
Danielle Castonguay

I Suffer Too Much, I Can’t Keep Quiet Anymore!
I feel inspired by a mission
Line

When the “Invisible Illness” becomes Visible
Or – Monster Lady Comes for a Visit
Lisa Edelsward

The story of a teacher
Marlene

Living with the Feeling of Being on borrowed time
Isabelle Martineau

MCS: A Life-Altering Disability
Ruth Woitowitz

Existing (NOT “Living”) With Multiple Chemical Sensitivities
Ruth Woitowitz

One of the Lucky ones!
Debra Aronson

My Illness Journey
Sophie M.

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MCS: A Life-Altering Disability

Ruth Woitowitz

Multiple Chemical Sensitivities (MCS) is a chronic debilitating disability that affects approximately 3% of Canadians, and the numbers are increasing. My health problems started while living in a moldy basement apartment, where I developed asthma-like symptoms. When I moved into my current Rent Geared to Income apartment in 1997, I was told my neighbours’ smoke would NOT enter my apartment. However, due to poor building construction, my unit filled with both second-hand cigarette smoke, as well as scented personal care/cleaning/laundry products on a daily basis, drifting in from behind the walls, through the HVAC system, from the windows (even when closed), from the laundry room, and through the door to the hallway. This increased my coughing and wheezing, and eventually led to bouts of bronchitis and sinus infections 2-3 times a year. Despite repeated pleas and begging to the multiple property managers, threatening to get a smoke-free petition going in our building, and even petitioning the government for years, our property managers refused to ask tenants and guests to refrain from smoking in their units or on the balconies. Smokers have more rights than those of us trying to stay healthy. I was angry, frustrated, depressed, and many days I was even suicidal.

By 2012, I had a smoker who lived directly below me, and my apartment continuously smelled like a bar just before closing – so full of smoke that I could see the “haze” in the air, despite having two heavy-duty air purifiers running 24/7. My furniture, clothing, and all of my possessions REEKED of cigarette smoke, and my health further deteriorated. I was not just coughing and wheezing anymore, but my balance and mobility were impaired, I had difficulty sleeping, I was nauseous and dizzy, I started vomiting, and had severe daily bouts of diarrhea from long-term exposure to smoke and scents. My blood pressure was erratic, depending on which chemicals I was exposed to (laundry and other scented products raised my pressure, cigarette and marijuana smoke dropped it to the point where I felt like I was going to pass out).

I was almost positive I had MCS, and finally got my diagnosis in January, 2017, after waiting for an appointment at the backed-up Environmental Health Clinic at Women’s College Hospital. Even with a diagnosis, though, there is no “treatment” for MCS – except to “avoid the triggers”. This is EXTREMELY DIFFICULT, when the entire world uses scented products in some form or another.

When Justin Trudeau legalized marijuana in 2018, my MCS went from bad to NIGHTMARE proportions. I was still battling the everyday smoke and scents in my home, but the added marijuana just tipped me over the edge. Five minutes of marijuana exposure has the potential to put me into an “unresponsive” state – where I can hear everything around me, but cannot move/function/speak. This TERRIFIES me, especially since I live alone, and cannot reach out for help when this happens . . . because it comes on so quickly. I have to wait for the air to clear of marijuana before I start to regain the use of my body. This is why I PANIC every time marijuana comes through my windows or from behind the walls . . . never knowing if I will make it to the bed quick enough to lay down before I pass out. Prolonged exposures to laundry products have also caused me to become “unresponsive” . . . as happened when I was in a clinic waiting room, when having scent-free health care fell through the cracks. The doctor didn’t know what was wrong with me, and I couldn’t move or speak, so I was rushed to the ER . . . and placed right beneath a hand sanitizer dispenser – causing me to have SEVERE coughing attacks. But I still couldn’t speak or function, and except for coughing, couldn’t move. It wasn’t until I was moved to a scent-free isolation room that I began to recover. I get SO FRUSTRATED AND ANGRY when people dismiss my concerns over the chemicals in scented products. You wouldn’t tell someone, “It’s just Cancer – Get over it!!!” They think I’m making it all up, think I’m over-reacting, that I’m “just too sensitive”. But they don’t see what happens behind closed doors. They don’t feel the terror in my heart every time I smell the scent boosters, the fabric softeners, or the marijuana being inhaled/absorbed through my carbon-filtered mask. Doctors wouldn’t tell patients in wheelchairs that “it’s just a few steps, you can make it”, but that’s what they’re saying to me when they don’t believe chemicals in scented products affect my lungs, balance, mobility, cognition, heart function, digestion, and expect me to go to doctors’ appointments, go grocery shopping on my own, and live a “normal” life.

While staying isolated behind closed doors causes loneliness, depression, and a whole lot of FRUSTRATION and ANGER, the alternative is landing back in the ER. And unless a doctor understands how to treat my “unresponsiveness” (i.e. place me in an isolation room free of all scents/chemicals/hand sanitizers/disinfectants), I will remain in that state . . . since the only “treatment” for MCS is “avoidance of chemicals” – which won’t happen in a regular hospital room.

Housing for MCS patients on low income is NON-EXISTENT. This forces me to continue living in an UNSAFE multi-unit dwelling (surrounded by others’ scents and smoke). In-person health care is also non-existent for me, unless I am willing to risk my health and safety and enter buildings filled with staff’ and patients’ scented laundry/personal care/cleaning/sanitizing products that will impair all systems of my body. While some health care facilities have “Scent-Free” signs up in their buildings, these guidelines are NOT adhered to by the majority of staff or patients, and definitely not enforced . . . making health care a luxury for MCS patients, if I am brave enough to go into the buildings in the first place. I refuse to go into a health care facility anymore, having had too many brushes with “unresponsive” episodes that scared the crap out of me. I can’t even go into grocery stores anymore – even with my mask and oxygen on – due to COVID’s protective measures of hand sanitizers and disinfectants (on top of the regular scented products flowing through the air). For the first time in 50 years, I have to rely on other people to do my grocery shopping . . . and I HATE IT!!!! I feel like a loser, like an invalid . . . like I’m HELPLESS. I want my life back – but MCS has a strong grip on my body, and until the world realizes that synthetic chemicals don’t equate to “pretty” and “clean” and “sanitized”, I’m stuck living in a self-enclosed prison within my apartment walls . . . as safe as I can get from all scents and smoke dispatched – against my will – by my neighbours through air leakage points behind my walls.

Despite the Ford government promising to “shine a light” on our challenges on May 15, 2019, and “build a health care system that truly works for the people of Ontario and is centered around the patient”, those promises have yet to become reality. MCS isn’t even being taught in Medical Schools, so doctors don’t even know about this disability unless these patients show up in their offices. This is why most Ontarians have no idea what MCS is, how it affects us, OR that, BY LAW, under the HUMAN RIGHTS CODE of Ontario, we have the right to be Accommodated for our Disability when we ask for it . . . in health care, in housing, in the community. Until the government steps up and fulfills its promises, the majority of people in Ontario with MCS have to go it alone, and fend for themselves … one battle at a time.

I’m VERY THANKFUL to have a team of two doctors in my life who not only believe MCS is real, but are EXTREMELY supportive, and who continue to advocate for my health and wellbeing. I know most patients with MCS aren’t so lucky, and have a difficult time convincing their own family doctors and specialists that their symptoms are not “all in their heads”!!! I’m also VERY THANKFUL for the ASEQ-EHAQ, a charitable organization in Quebec that advocates for and supports Canadians with MCS, AND teaches anyone who wants to learn about this life-altering disability, through workshops, webinars, and information sheets that provide “healthier” alternatives to everyday products. The world needs more doctors and volunteers like these people, who care enough to give of their time, energy, patience, and kindness . . . to people who are often ignored, dismissed, and marginalized in their communities!!!