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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Living with the Feeling of Being on borrowed time

Isabelle Martineau

I have been living with Multiple Chemical Sensitivities (MCS) for almost twenty years. Until the age of twenty-six, I led what you might call a normal life. I was a waitress in a restaurant and had time to read, take university courses, see friends and family, cook, and take walks in the woods.

Until one day I realized that I was no longer able to do my job properly. My arms were shaking, and I was often dropping my customers’ plates and drinks. At first, I thought I was getting nervous and tried to overcome my difficulties with relaxation and psychological conditioning exercises. But what I called my “waitress blues” only got worse. So, I got another job in the canteen of a bingo hall, where there was no service at the tables. I held on for almost two years before quitting because I couldn’t lift the French fry trays and wash the dishes at all. So, I went to work in a call center. It was while I was working there that something happened to me that would happen frequently afterwards: an infection that wouldn’t heal, even with increasingly strong antibiotic treatments, for several months. It was also at this time that I noticed something I could hardly believe myself: laundry products, household cleaners, shampoo, soap, and deodorant made me sick. I had nausea, indigestion, migraines, brain fog, loss of balance, loss of muscle strength and generalized pain. I was exhausted, sore, unable to function on a daily basis. I quit my job because I felt too sick. At the time, I thought they were aversions and were due to fatigue caused by antibiotics. After a few weeks at home and going off the antibiotics against the advice of the doctor who had prescribed them, I was feeling a little better. I found a new job, this time as a receptionist for an insurance company. The advantage of this position was that I was alone in the lobby and that the place was well ventilated. It was also less physically demanding than the call center because I hardly had to type at the computer. But after two years my symptoms got worse, I could hardly take the subway, I was sick at work, and my pain was too strong to be able to press the phone keys and transfer calls. That’s when I decided to talk to a doctor about my reactions, thinking that after all it might be relevant. That doctor then referred me to an allergist.

After listening to me, this allergist explained to me that I was not suffering from allergies, but from intoxication reactions, known as multiple chemical sensitivities. He warned me that there was almost no research being done in this area, since people with this syndrome generally tolerate drugs very poorly and that research funds were best allocated for diseases that could be controlled by drugs. He explained to me that the mechanism underlying MCS was unknown, but that there were two main hypotheses. The first is that the liver stops producing the enzymes needed to break down the molecules of the products that poison us (the average individual can absorb a certain amount of these products without becoming intoxicated, the amount tolerated varies from one person to another, and there are people like me who are “at the end of the curve”). The second hypothesis defines it as a neurological disorder. Thus, the central nervous system would trigger an inflammatory reaction in the presence of minute quantities of toxic products, even though these products do not constitute a real threat to our body. Since in my case I also had infections that did not heal and inflammatory pains that persisted several days after stopping the effort that caused them, this allergist told me that I seemed to have “a body that does not defend itself against anything” and that for him this was perhaps a sign in favor of the first hypothesis to explain the MCS. He also told me that the only thing to do was to avoid the products that triggered my reactions and warned me that this could result in a life of almost total isolation.

This allergist was right. I had to stop working, stop going to public places, stop visiting friends, stop having people over, learn to deal with what was seeping into my apartment. I had to resign myself to not being able to assist my aging parents.

I also had to learn to live with a loss of autonomy, since the pain and loss of muscle strength proved to be irreversible and prevented me from doing my daily activities in a normal way.

During the first ten years of my illness, only one person in my immediate circle understood what my condition was and decided to use the appropriate products to continue to see me. It was this person who almost always took care of me and to whom I often sought refuge when it was not possible to stay at home, but I was still able to make the trip to her house. My mother then understood what to do and I can now go to her house and invite her to my house. Also, for a few years, my father and step-mother have taken me on a temporary basis a few times.

I am diagnosed with a motor impairment which entitles me, in principle, to home care services from the CLSC. But despite numerous attempts, they have always refused to offer me services adapted to my MCS. Managing my disease therefore consumes a huge part of my energy and that of the person who takes care of me.

I also had to learn to live below the poverty line, which means getting by on a welfare cheque to cover all my needs.

By 2013, I found an apartment that suited me. The walls were airtight, I had my own entrance, there were elevators, as well as a grocery store and a pharmacy inside the housing complex (this reassured me because I didn’t have to walk far to get to my door in case of discomfort; in addition, I could run a few errands independently because this type of layout requires less muscle strength than going outside). The building managers had no objection to me blocking the heating entrances and installing portable electric heaters for the winter. Everything was fine, but once the rent was paid, I only had $90 left for my other expenses. I got by with the help of a volunteer from the Centre de réadaptation Lucie-Bruneau who would pick up a basket for me at the food bank every week. Obviously, there were not many products recommended for a person living with a MCS in this basket. But hey, I felt like I had a little control over my life because I was in a safe place and didn’t have to eat what I knew would make me really sick. In 2015, the rent increase exceeded the amount of my cheque, so I had to leave that place.

I found myself another apartment. I was incredibly lucky because the dryer outlets are on the roof and because my first downstairs neighbors were young, anti-chemical greenies, and the ones who replaced them don’t use many “strong” cleaning products. Obviously, that doesn’t solve everything, especially because all the buildings are adjoining one another, but I haven’t relived the daily hell I experienced before 2013.

Because the rent is much lower, I can buy better quality food. I can also now pay for the rental of oxygen tanks prescribed to me by a doctor specializing in MCS whose contact information was given to me by ASEQ-EHAQ.

Since 2020, I am even entitled to a rent reduction thanks to a program of the Office municipal d’habitation de Montréal which will last until 2025. So, I can now afford little extras that make life sweeter, like better quality shoes that allow me to walk longer without triggering a pain attack, clothes that hurt less, a picnic bought at a restaurant or a movie rental on my television.

Two other important aspects have helped me get my life back a bit.

First, the Centre de réadaptation Lucie-Bruneau, where I attended a program to manage my motor impairment in 2013-2014. After more than a year of waiting and being turned down by the CLSC for home support, it felt great to have professionals take me seriously and give me tools to manage my condition. All the staff did their best to provide me with the least toxic environment possible, I have never found that anywhere else in the health care system.

Secondly, the Radisson Community Centre, which offers activities for adults with disabilities. Many members of this center live in CHSLD’s, so their clothes are washed with fragrance-free products, which means there are few toxic substances in the air. The caregivers are also aware of my situation and are understanding towards me. I am able to go to my center two half days a week, I get away with a headache and digestive discomforts that don’t escalate to a crisis and disappear in a day. So, I’ve found a place where I can fulfill myself and do activities at my own pace, asking for help with the physical tasks I’m unable to do. I can finally see people again and get involved socially.

But despite this happy ending, I feel like I am on probation, living with a sword of Damocles hanging over my head. What happens if I have to go to the hospital? If I get evicted from my apartment? If I have new neighbors who use products that intoxicate me? If my friend who helps me is no longer able to do so? What if something bad happens to my mother and I can’t do anything?

I feel that many of us with MCS have found “ad hoc” solutions and are resourceful, resigned, and resilient. I think we are brave and courageous. But this is not enough to ensure a minimum of normal life and access to care and services. This is why I thank the ASEQ-EHAQ and why I support their demands: we need adapted and affordable housing, appropriate care, tailored services, support for the people who help us.

Personally, I think that the special needs related to this disability should also be recognized, that we should have the right to be reimbursed for oxygen by Medicare, to get help when attending public places by having assistance to carry our oxygen or other equipment we need to be functional, when buying the food that we need, and when fulfilling our family obligations, and have full access to leisure activities and social involvement. For now, in addition to being sick, we still have to struggle to get the same things as other people with disabilities and resign ourselves to a life that is less fulfilling than what would be possible if the relevant services and programs were more accessible to us.