L'Association pour la santé environnementale du Québec / Environmental Health Association of Québec

Your Voice Matters

When life becomes a nightmare

My story of living with multiple chemical sensitivities

Danielle Castonguay

My life before I had multiple chemical sensitivities (MCS) was “alive”, busy, stimulating, I moved around, went out, met people, got involved in different organisations and committees, participated, discovered, learned!

I was alive.

How did the health condition start? One day, at work, the windows were being sealed with a caulking product that had a strong smell. Following that exposure, I had a bad cold. The symptoms repeated themselves every time this type of product was used. At that time, I didn’t understand what was wrong, and why I reacted like that. I had allergy tests and they came back negative.

Over time my symptoms increased after exposures to different products, such as perfumes, fragrances, shampoos, detergents or deodorants, etc. My symptoms included sinusitis, bronchial congestion, asthma, lack of concentration, irritability, anxiety, and a lack of energy. I found it increasingly difficult to do the things I had always done, and I couldn’t understand why. The reaction time to develop symptoms after exposure seemed to be quicker, and I seemed to have an increased number of symptoms to different products or perfumes.

I changed jobs and I started working in an office. One of the employees, among others, wore a really strong perfume which carried an intense smell. One would know where she had been since she left the scent behind – her movements could easily be tracked. Every time she came to my department, I got sick with symptoms which included: cough, asthma, sinusitis, headaches, inability to concentrate, and muscle pains.

With each new exposure to fragrances from my colleagues, whether from laundry products, perfumes or deodorants, the symptoms got worse, and I found it increasingly harder to recover from these attacks. I talked to my manager about it but management did not really understand. Eventually I was moved to a section a little further away, but it was too late, the damage was done. It took too long to act, there was too much misunderstanding, there is no awareness about this condition. I had become so reactive that there was no place in the office where I could work. I wore a mask with a carbon filter all day at work. It was uncomfortable and hot. My reactions were a little less violent this way, but it was not enough.

A particularly violent episode occurred when I visited the washroom after someone who was wearing perfume. The exposure triggered a fierce coughing spell that was so intense, that I could not catch my breath. I learned first hand that running out of air is pretty scary.

My requests for a perfume-free environment were met with the same answer: “You can’t stop people from using scented products.” I said that it could be done for health reasons, and that a fragrance-free section could be had, as is done in other provinces. (I was informed by someone that during her business trips to Ontario, she noticed that some companies had closed-off, perfume-free sections. So why not here?). This is my personal reflection.

I could not bear the exposures any longer, and so I had to retire many years before I could afford to. I now have a small, miserable pension and have to manage with this, because of perfumed products.

Due to COVID measures resulting in telework from home, I could go back to work. But the illness of MCS has progressed so much that now even working from home is difficult. The laundry products from the neighbours, which trigger an increasing number of symptoms and which affect me immediately, and the neighbours’ cigarette smoke, are making me sicker and sicker. I am suffocating. I can’t go outside anymore because of the laundry soap and fabric softener that is emanating from the houses in the neighbourhood. It seems that the air outside is impregnated with these chemicals and that it forms part of the ambient outdoor air. There is no place left to live for people who suffer from this disease.

I first felt the symptoms of MCS almost 30 years ago, but I was diagnosed in the summer of 2020. I made the connection with scented products, fragrances, at least two or three years before that.

The dentist understood my requests for accommodation. When I arrived at the dental office, I could not perceive any odours, but I started coughing and I could not stop. As I approached the dental hygienist, the smell of her laundry products hit me and she had to leave to change her uniform, or I would have had to leave without treatment. It was a painful experience. And while the dental hygienist felt badly, and she did take action to accommodate me, still it struck me that no matter how much we explain about the needs for this health condition, people do not really understand.

Obviously, we need more education and awareness about this condition. Ignoring us does not make the health condition go away!

I still have lots of desires, lots of dreams, but no possibility to even try to achieve some of them. I can no longer see anyone or go anywhere, such as grocery stores, events, parties, etc., since constant exposures make me increasingly sick.

I am talented and intelligent; I like to participate and I have abilities. But it is impossible for me to put this to use in the community, and to make myself useful, because of this health condition, and because of a lack of the political and social will to change things, and to let people with MCS take their place in society.

What has my life become today? I no longer have a life. I don’t see career opportunities anymore, no more hobbies or opportunity for personal development, no more learning either. In front of me there is only emptiness.

An increasing number of products are now affecting me. The worst ones are laundry products with fragrances, perfumes, deodorants, scented shampoos, cosmetics, body, face and hand creams, tobacco, disinfectants with fragrances, etc. They are too many to mention.

The reactions that I have to exposures may differ from product to product, but most often now the symptoms include breathing problems, asthma, coughing, sinus congestion, lack of concentration, aggression, inability to act (brain fog), muscle pain, and all this leaves me with a lot of despair.

There is not much help from the medical world. My doctor is quite indifferent to the health condition I am experiencing and I get the feeling that they would like to get rid of me or make me disappear. I feel that the indifference I receive is a pretty violent thing.

As it is for people living with this health condition, it is very difficult for me to access any kind of health care whether it is for a doctor, dentist, optometrist, etc. Accessing other essential services such as the pharmacy, or simply shopping, is an obstacle course since exposures are everywhere in cleaning and maintenance products and in the products used on a daily basis by the general public. It is very difficult for me, to simply have a life.

Even my family has trouble understanding this health condition and what I require in order to be able to live in health. People tend to cling to their favourite products They don’t understand the effect it can have on my health. They do not act out of malice, but rather out of ignorance

When I dare to say that I don’t want to participate in a family or other event, there is a lot of misunderstanding. While they understand that a person can be allergic to peanuts and so has to avoid them – how hard is it to understand that I have to avoid these chemicals in order to live in health. I still don’t know how to breathe part-time!

If the competent authorities in Quebec do not raise awareness about the health condition of MCS, then how can we have access to medical care without perfumes and fragrances, and without making the health condition worse?

There is, no doubt, a significant socio-economic burden of this health condition. It is time for decision makers to remove these unnecessary polluting chemicals that stop us from accessing health care and other environments. It is important for us to have access to health care and essential services, just like any other citizen. Public awareness of the impact of these chemicals on health and the environment will result in healthier choices.

The right to breathe and especially clean air, is a right that is above all others. The medical world must encourage and support that.

I have a heart defect (bicuspid aortic valve) that I need to have operated. This is a major surgery. I don’t know how I will survive this surgery because of the perfumes and fragrances in the uniforms, deodorants, scented shampoos, etc., used by the staff, and the cleaning products used in the hospitals.

I have not done anything to get this health condition. It is not a punishment for something I have done. This health condition, for me, was triggered from exposures to chemicals contained in perfumes. It is a cursed disease that is slow to be recognised. Refusal to do this leads to an enormous burden on people who are suffering and disabled, and who are depending, asking, and demanding their governments to act!

I end this by letting you know how I feel. I am angry, distrustful, afraid, anxious, discouraged and hopeless. I feel there is no room for me. There is no air I can breathe.