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

Your Voice Matters

The Stolen Life

S. Shepherd

Growing up I loved singing and being outside. All the kids in the neighborhood hung out in our yard. We would drive our bikes and play. All through growing up we socialized and had fun; had bon fires and corn boils, played music and never realized we were poor. Some people would say that we were quite sheltered from the real world. When I got to high school is when the realization that classism existed, it was shown to me. My grade nine teacher told me that where I came from, I would be pregnant and on welfare. Statistically he was correct but he didn’t know my upbringing. I was struggling and so I dropped out. The next year I went to the vocational school and I completed grade 9 and 10 in one year. I then went on to grade 11 with business; and graduated in Banking and Finance with Secretarial.

I started working for the local University in my community as an Administrative Assistant. I was very excited and loved learning new things. It was great connecting with people that I had never known before and learning about university life. It was something that was never thought of as an opportunity for me, as we didn’t have the finances and I didn’t think I had the smarts.

Staff and students liked me and felt comfortable with me. They often told me that my happy nature and smile always made them feel welcome. It was a long time after I started that a particular professor returned from sabbatical. I was pre warned that he was temperamental and gave the previous secretaries a difficult time. They were correct, and he eventually lost it and locked me in the bathroom with him. I thought I was going to die; his pupils were large and black, but I escaped and got away. He was requested to do his work with another secretary. After approximately two years the secretary he was working with left and I was told by the Department Head that I either had to work with him or leave; so I left. I floated until an opening came in another department in which they placed me.

It was while working in the new department that we were moved to a vacant house that the university had purchased. I had a baby girl in March 1988 and my wonderful boss and his wife came to see me at the hospital to tell me our office would be moving into the vacant house. He was so respectful and appreciative of the staff in his department.

I returned to work in June and by the end of August he was gone from our department. The new Director that replaced him was nothing like him. She was abusive to staff and she targeted people one at a time; she would isolate them and then pick them apart and find fault. It was difficult watching it happen and no one in power would help.

I had my second child in December 1989 and shortly after my father became ill. I requested a leave to help my mother care for him and my new director said no. I asked HR for help and then it was my turn to be the target. When my symptoms started, I just thought it was stress related and that my system was run down.

In the early ninety’s I started having headaches, memory blanks and being spacey, itchy eyes and skin, rashes; flu like symptoms of nausea, and feeling hot inside like my internal thermostat was stuck on high. I would swell up and my clothes that fit in the morning would not fit by noon. I had nose bleeds and extreme fatigue, pain and stiffness, hair loss, blurred vision, the taste of metal in my mouth. I lost the pigment in my skin and it looked gray.

After much pain and suffering, and many lab tests that came back normal, my family doctor who knew me since I was fifteen and who was also trained in AIDS recognized it as an auto immune issue and he referred me to Dr. Bruce Elliott (now deceased). Dr. Elliott was the AIDS doctor for NS and he fully knew the immune system. When I went to see him, he also knew about MCS because he had experienced toxic overload in his own life. He then referred me to Dr. John Molot to have double blind testing completed.

One thing we knew was when I removed myself from my workplace for six weeks my health improved; I even lost thirty pounds. Before that I couldn’t lose any weight, even eating only lettuce I gained weight. After my medical leave I returned to work and within two weeks I was becoming ill again. There were days that I would drive home and not remember the drive, but I would end up in my drive way thinking about how I got there.

The Health and Safety Officer became involved. Mr. Cordell had all of us write down our symptoms and then he had the building tested. It came back with many moulds being present. He took the results to the biology department and had the professor who knew moulds review them. The professor said our symptoms matched what the moulds could cause.

He then began the process of getting the building fixed but our director fought him on it and said that there was nothing wrong with her building. He then came to me and asked me to go to the NS Dept of Health & Safety in our area and for me to do a work refusal (he asked me because of all the staff I had the most symptoms and I had documented proof). He gave me the name of the person to ask for and a copy of the mould report and away I went.

The person at NS Department of Health & Safety, Dave, told me the numbers were high. I didn’t know what that fully meant but I began to cry. I cried because someone finally validated my concerns and health issues. They started the work refusal action. I worked from home and although that helped me improve physically, the torment of mental abuse from my director caused much stress. She would call me numerous time a day to check that I was working and she’d try to gage me into confrontation; she made me drive twice daily to get the mail from the mailroom on campus. Then I would take the mail to the office and she or another staff member would come to the door to get it. Prior to the refusal I only had to go to the mailroom once a day and I would usually do it on my way back from lunch. She accused me of saying things I didn’t say and I’d have to prove that I didn’t say it. It was my turn to be a target because I had spoken up.

I tried to return after the renovations were done but the daily exposures to staff member’s personal products, off-gassing of the new materials, being demoted in my job, having my desk placed facing the corner and wall, and having to record when I went for a pee made it difficult. The last day I worked, she had another employee spray the front door with WD 40 and the smell sent me into a very bad reaction. I left the building to get outside but still couldn’t breathe. I went to the next office to ask them to help me and to call my union representative. The union representative asked for me to be able to leave and my director said no.

The Department of NS Health & Safety was contacted because it was felt that she was punishing me for doing the referral (and she was) but because she had a history of abusing staff, Shelley at Department of NS Health & Safety said it wasn’t discrimination because she treated everyone abusively.

I used up my sick leave and EI sick benefits. I then applied for long term disability but was denied because the illness wasn’t recognized. After being off for almost two years house bound, I was terminated. I hired a lawyer and sued for wrongful dismissal. I won but was still too ill to return to work. It was another three years, with no income, and two hundred thousand dollars later in expenses, that I had improved enough to try to return to work part time.

In 2000, I lost a baby to Trisomy 13. Two other staff members also had babies with trisomy issues and one of them died as well.

Then in 2001, I began working fulltime hours and did pretty well until 2014 when the ventilation system in my current workplace stopped working properly.

Since 2014, I have felt like I am on rewind. I told my school administration that there was something wrong with the air quality. The air feels heavy and it gives me a headache, blurred vision, sinus issues, muscle stiffness and pain, and fatigue. I also get periods of scatteredness where I can’t remember where I put something, or lose time, etc. I was ignored, they were getting tired of me complaining to them and I was experiencing their eyes rolling as a response. I explained that I have MCS and that my body reacts; that I had had seizures previously when axe products were sprayed and that is why I have the Oreck air purifier on my desk.

I found that as the administration changed so did the staff and many of the new staff were scent wearing people. My sense of smell and body reactions were accurate ninety eight percent of the time when I told them the system wasn’t working properly. I and other staff went to our school health and safety committee. From there a meeting was held and it was discovered that I was correct, not only was the system not working properly it had not worked at all for almost a year. Tim came into the office and apologized to me. I thanked him and told him that I didn’t need to be right, I just need them to listen to me when I tell them it’s not working because my body tells me. Needless to say, they still don’t listen or believe me and they have denied both requests for accommodations that have been submitted, one in 2017 and the other in 2021.

During these times, if I hadn’t had the support of my husband, kids, mother, sisters and a few close friends I truly believe dying would be the easier route. Having these very few people along with the support of my naturopath, Dr. Lee, Dr. Elliott, Dr. Molot, Dr. Fox and my Osteopath kept me sane and alive.

The resulting changes in my life were and still are limited social events, losing a job the first time that I had for seventeen years, losing my income and losing friends and family. I am still not able to exercise because it causes me weakness and fatigue; I am unable to sing due to the hoarseness caused by exposure to chemically scented products burning my vocal cords and closing my airway.

Some of my major triggers are Axe (caused me to seizure twice), perfumes, scented laundry and some unscented chemical laundry products, scented hair products and other personal products, petroleum-based products such as oil, gas, diesel, WD 40, sanitizers and disinfectants, etc. Some medications cause me to react as well.

The worst symptoms are seizures because they can cause me to lose my license; bladder and bowel issues, the muscle pain and spasms that have gotten to a level of ten plus at times. I have what feels like pinching of my veins; it has caused reduction in my blood flow to the point where the lab techs have had to poke me four times and then they just get enough blood to do a test but not fill the tube. It’s extremely painful. The constant feeling of exhaustion and fatigue, along with the nausea is very draining. Then you have to force yourself out of bed and put on a happy face so people don’t judge you.

The closing off of my airway and the hoarseness of my voice due to the impact on my vocal cords is not pleasant. I was fortunate to have seen a lung specialist who provided medication to help with it. She was able to explain to me and my husband why this is happening.

Ease of access to essential services and to the community is definitely something that those of us with MCS do not have. We have to rely on others or plan in detail how we can access with the least amount of exposure risk. I cannot fill my own vehicle with windshield washer or gas, I have to rely on my family to do it. If I’m travelling alone, I have to find a full-service gas station and that can be a challenge. A couple of blessings of COVID-19 for those of us with MCS has been curb side pick-up, zoom meetings and online/phone appointments, and working from home for those of us who are still employed. During the first wave of COVID-19, I worked from home. During the second wave, I was not allowed to work from home even though it was encouraged by the province. The frustrating part was others in the same type of position as I am in were allowed to work from home.

When I began this journey of MCS/CFS I had a wonderful family doctor. He knew me well (since I was 15) and he knew that I was not a complainer and that I didn’t frequent the doctor for every little thing. He had referred me to an allergist and I received allergy shots every month for I believe three years. My allergist, Dr. Rhoddis, was wonderful as well. She was with me every step from basic allergies to be being diagnosed with MCS. Not once did she make me feel that she did not believe me. When I had my children tested, they were fairly young. I wanted to know if they had the same shellfish allergy because a lot of Lobster was eaten in my husband’s family. My daughter had the shellfish allergy but my son had the mould allergy, 4+. Dr. Rhoddis felt that for him to have that high of a mould allergy at such a young age, he must have been exposed to the mould while in my womb, and I was pregnant with him while working in the office building with the serious mould problem.

Dr. Elliott and Dr. Molot verified for me that what I was experiencing was real and that I wasn’t crazy. It helped that Dr. Elliott had also lived with the condition, it helped him to relate more with me as his patient. My heart broke when he drowned; I felt like I lost one of my strongest supporters. He wasn’t afraid to speak up for his patients. Now I have Dr. Fox who has been helpful and I have my naturopath and osteopath. These three are very important to me and my survival.

That being said, it’s very difficult to access health care from my current family doctor because he really doesn’t understand MCS and the impact on the body. He did mention once when I was in pain that he felt I had Fibro, but the MCS he doesn’t seem to fully understand. Living in this body for the past thirty plus years, I know without a doubt that the exposures trigger the fibro pain. I see him mostly for prescription renewal and non-related MCS issues. Lack of education regarding MCS often makes me feel unheard by him so I purchased Dr. Molot’s book and gave it to him as a gift. I asked him to please read it so it could understand a little more.

I have liver pain with over exposure and I have been told I have a fatty liver. I understand the issue with fatty liver because my grandmother had it and died from non-alcoholic cirrhosis of the liver; she was also diabetic. Most of my liver pain comes after exposure to strong perfumes, sanitizers and disinfectants. I contacted the Canadian Liver foundation because of the lock down and told them my symptoms and situation. They suggested I look at toxic hepatitis as many of my symptoms are listed there and they were. I asked my current family doctor for blood work and a liver function test. He explained that our government has instructed them to not request any unnecessary tests, etc. He then said that for fatty liver the best recommendation is to lose weight. I felt like I was just deflated, as normally that would all make sense, but since but many of us with MCS can’t seem to lose the weight; I never felt heard!

Going to the hospital is something I don’t do unless it is absolutely necessary, I try to avoid it at all costs. If I have an exposure it becomes painful to have my blood drawn. Waiting for tests, x-rays or breast screenings is challenging when so many staff and patients are wearing scented products. I have to have someone with me because I can get confused, slurred speech, agitated, can’t breathe well and I can’t drive after an exposure because it is like driving drunk.

I fell out of my car and I am sure that I broke the pinkie finger on my right hand. I would not go to the hospital because of the pain and risk from exposures, which are even higher since COVID-19, and which are worse for me than the pain from the broken finger. With COVID-19, it is worse due to the increased use of the sanitizers and disinfectants. There is none, nor has there ever been any thought for those of us living with MCS. Even the testing sites for COVID-19 haven’t provided a safe zone for those of us with MCS, therefore I won’t be getting tested.

I had a severe reaction at work and drove myself to the local community health clinic because I knew I needed oxygen to help me breathe and to reduce the exposure reaction. When I went inside the clinic, the place was full. The air was filled with scented products, and it hit me. I knew I couldn’t be there and be safe. I went back to my car and started meditating to remain calm as it would have been easy to panic as I had no safe place for help. I then called 811 and explained what was happening and my situation. Thank God the person on the other end was knowledgeable in MCS.

She could hear my trouble breathing and what she felt was slurred speech. She sent an ambulance to me in the parking lot. They arrived and I told them what was happening; when I told them that axe products can cause me to seizure the smaller guy of the two got in the front because he was wearing axe deodorant. The larger guy, Peter, told me to get in the ambulance and I did. I told him I have MCS and he asked what it was. I tried to explain with a poor level of concentration. I told him that I just needed some oxygen and that it would help me. He told me he had to take my vitals first and then said your oxygen levels are good. Then he asked for my health card (he was very cold and snotty towards me).

I couldn’t think where it was or where it might be, and then I said it must be in my car. He unhooked me and said for me to go it. I got up and dizzily walked to the door. I could see the silver handle but couldn’t think or process how to make it work. I told him that I didn’t know how to open the door, and he reached around me and opened the door. I fell out of the ambulance. It felt like I broke my big toe and my left shoulder hit my car. I got up and I told him not to touch me; that I would call my husband to come help me. As I was opening my passenger door to sit in my car to call my husband, he tapped me on the shoulder and said, “touched you”. I told him he was rude, uneducated and ignorant. He continued to be cold and rude until my husband showed up. My husband was as big as Peter and he doesn’t take any crap. It was amazing how much Peter’s attitude towards me changed when my husband arrived, he became a lot nicer. I refused to let him touch me. He told me I had to sign the page stating that I refused treatment. I signed it and left with my husband. Later that evening my son-in-law and my husband picked up my car.

Since COVID-19 started I have not been able to see my dentist. I have two teeth broken and a couple cavities; I believe that the high levels of acid caused from my daily exposures is hard on my teeth. I can’t see my local dentist because she can’t accommodate me; and I can’t see my holistic dentist who did my implant, because he is in Halifax and it’s considered a hot spot. I am not willing to take the risk until the numbers are down so it could be longer than two years by the time, I have my teeth fixed.

I would like to see it mandated that hospitals, dental offices, ambulances, schools, etc., be educated about MCS and how it impacts those who live with it. They need to make it a requirement that they be scent-free so everyone can access health and education without being at risk. Wearing scented products is not a necessity of life, but being able to breathe certainly is a necessity. If we can tell people that they cannot smoke cigarettes or weed at work, or they can’t drink alcohol while at work as part of the job requirement, then we should be able to enforce the no-scent requirement.

It would be wonderful for those with MCS to be thought of and included when there are decision-making and inclusion policies being made. I feel all staff in the medical, dental and school communities need to be educated about MCS and how to help someone if they are having a severe reaction. The lack of education and awareness resulting in ignorance, has caused much hatefulness to those living with MCS, as does other discriminations that take place. There also needs to be more education and awareness on how the toxic products are impacting people’s health who don’t have MCS so it can help prevent others from developing the condition.

There needs to be more education for people to learn their rights and where to turn for help. The Canadian Human Rights Commission recognizes MCS but each province can be different, and that needs to change! If the Canadian Human Rights Commission recognizes it, then all provinces in Canada should have to recognize it under the Canadian Human Rights Act. All provinces should guarantee the federal Human Rights…we are all Canadians.

I was thirty years old when MCS hit me, it was brought on by a workplace building full of mould. I am grateful for the people who have helped me and to them I will always be indebted. When you are not believed, or feel like you are not believed, I compare it to the child that tells someone over and over that they are being abused and no one believes them. The feeling of being unheard, not believed, equals that you don’t matter. You are shunned and excluded. Like sexual and domestic abuse, MCS is mostly a female issue and we all know from experience that we don’t matter and we have to fight to be heard. It is a very traumatic experience.

Western trained medical personnel love to try to gas-light you and make you believe it’s all in your head. I know better, I have lived in this body now sixty years; and I can remember being very healthy and living a “normal” life, being very active and social and enjoying life. The part that impacts the mental health of a person with MCS is the trauma being caused by western medicine.

I am now in a position of having to decide either to take early retirement at sixty or to take medical leave and fight for long term disability. My income will reduce from $2000 per month to $900 per month and mainly because my workplace wouldn’t listen or doesn’t believe in my illness. This serious reduction in income will have a severe impact on my health as I will no longer be able to afford the osteopathic and naturopathic care. I feel as though I am being punished for something completely beyond my control and something that could have totally been avoided if they would have listened to me and fixed the problem when I asked (begged).

In the future I would like to see all medical personnel trained in environmental medicine. It costs approximately $800 US for the three-level course from the American Academy of Environmental Medicine. This training would help provide all-inclusive care for the MCS Canadian population. I want a safe hospital and medical office; I want a safe dental office and workplace. We need to stop allowing companies to create their toxic products that are harming the environment and the people and other life that live in it.