I am a registered nurse and a social worker. When I went to work at a state-owned nursing home in Vermont in 1987, I enjoyed excellent health. After working there for about a year and a half, however, I noticed that shortly after entering the building, I would experience chest tightness and I would feel like I had a lump in my throat. I always felt like I was coming down with the flu. I had a headache every day I worked. I noticed that when I was away from the nursing home on the weekend, I would feel much better.
I started keeping a diary and recording my reactions: where I was, what triggered the reaction, and my symptoms. My diary indicated that I was reacting whenever cleaning was being done in the facility, which was almost constantly. I approached the admini-strator of the facility and told him that the cleaning products were making me ill. His response was not what I had hoped for. He was angry at me for complaining and said that the cleaning products didn’t bother anyone else, so why should they bother me? Furthermore, he said the cleaning products had been bought in bulk and they would have to be used up before he would even consider changing them.
The reactions from my co-workers also shocked me. The housekeepers would not even look at me, much less speak to me. Staff would whisper to each other and laugh when I walked into the nurses’ station. And these were professionals—nurses and social workers. One day I had a severe reaction that required a visit to my doctor, who recognized that I was having a reaction to cleaning chemicals. He wrote a letter saying that I should remain out of the building for two weeks to allow the residue of the cleaner in question to dissipate. He supported me in a workers’ comp claim for the two weeks I would miss from work, and that claim was granted in December 1989. He also reported the facility to VOSHA (Vermont Occupational Safety and Health Administration) because he suspected that two different chemicals had been mixed together, creating a combination that caused me to react.
VOSHA’s inspection found many things wrong, and recommendations were made to improve air quality through ventilation and the proper use and mixing of cleaning chemicals. I returned to work two weeks later with the naive expectation that I would now be able to work again with no physical problems. Boy, was I wrong! This was my first experience with how most Vermont state agencies work. Even though VOSHA had made recommendations, that did not mean that the facility was going to follow them. To my knowledge, VOSHA never followed up, despite the telephone calls from me, and when I left messages, no one called back. I continued to work even though I was having reactions every day while at work. At this point, I had no idea what was wrong with me. I had never heard of multiple chemical sensitivity. I thought I was going crazy, and this idea was reinforced by my coworkers, who thought I just wanted to complain.
Five months later, in May 1990, I had a severe reaction to a cleaner that I could identify. I took the label with me to the doctor, and he thought that I was reacting to the pine oil ingredient. He wrote a letter stating that I could not return to work for two weeks until all the pine oil had dissipated. The letter also stated that I had a limitation that prevented me from being around solvents containing pine oil. The facility received this statement from my doctor but never acted upon it. Once again, however, my claim for workers’ comp was granted.
I continued to work and became very creative at avoiding areas of the building that were being cleaned. My job duties were changed so that I could spend more time in my office and less time on the floors of the facility, which were being cleaned almost constantly. I received permission to clean my own office, which gave me some control over my immediate environment. I continued to have some problems, but an eight-month maternity leave totally cleared my symptoms, and my previous state of health returned. My unexpected pregnancy at 43 years of age was a big surprise. Fortunately, my daughter was born healthy and has enjoyed good health throughout her eight years.
If I had known at that time about multiple chemical sensitivity and what I should have done to protect myself, I never would have returned to that facility after my maternity leave. But return I did, and the very day I returned to work, I started having reactions, even though I had had no reactions for the past eight months. To make matters worse, my reactions were now more severe than they had been previously. I developed reactive airway disease, where my neck swells, I feel like I can’t swallow, and I lose my voice. I also become very short of breath, with chest pain and a sharp pain in the center of my upper back. I also developed hives on my neck and chest. I could not believe that this was happening to me. In my ignorance of MCS, I wondered if I were having some sort of psychological incident. Once again, however, I could identify the cleaner to which I reacted, which happened to be a different one this time from that which had previously caused a problem. I went out again on a two-week workers’ comp claim in December 1991. I returned to work on January 2, 1992, only to go out on workers’ comp again on January 13. Whenever I had these two-week periods away from the facility, my symptoms would abate, and I would return to work hoping that everything would be fine, but it never was. I discovered that even though the facility had promised not to use the cleaner that had bothered me this time, staff members were using up what inventory they had on hand. This episode left me with a diagnosis of asthma, allergy, and hypersensitivity reaction.
One other woman had to leave the building the same day that I did because she reacted to the same cleaner. She was too intimidated to ask for workers’ comp, however, and returned to work the next day. She has since been diagnosed with MCS. After this last workers’ comp claim, the State of Vermont started to deny workers’ comp claims based on allergies, which these reactions were being considered. Another woman had a major incident in July 1999 after being exposed to the same troublesome cleaner. Then after being exposed to excessive perfume in October 1996, she was hospitalized for four days. She was having so much chest pain that she ended up in the telementry unit so they could monitor her heart. A technician who came to give her an EKG was wearing so much perfume that it exacerbated all her symptoms. The patient’s husband had to tell the technician that her perfume was making his wife sick, and he asked her to leave the room. None of the hospital staff really believed, however, that perfume exposures could be causing the patient’s problems.
I continued to work and continued to have reactions on a regular basis. By this point, I could not tolerate the scents coming from perfumes, aftershave lotions, or cleaning products. My reactions were no longer limited to the facility where I worked but happened at the grocery store, in most public buildings, in friends’ homes, and even in my own home. I had a teenage daughter who liked to use perfume and scented hair products, so my home life turned into a war zone like my work life. I think what really got me through this difficult period was having a young child to love and care for along with a supportive husband.
Meanwhile at work, two more of my coworkers developed MCS symptoms. We still had not heard of MCS, however, but were focusing on Sick Building Syndrome. As we researched Sick Building Syndrome, we found literature on MCS and discovered a physician in western Massachusetts who specializes in environmental medicine and has helped me tremendously.
By this time there were five of us from my facility who had been diagnosed with MCS. We were receiving support from the Vermont State Employees Association, the labor union of the Vermont state employees. If we had not had the union behind us, we know we would have been fired years ago. Several other employees would come to us to complain about problems they were experiencing with cleaners and the poor air quality. We would ask permission to use their names in our complaints, but they would refuse; they also declined to join us to try to improve working conditions.
We started asking other employees to not wear perfume, but to our dismay we could see that our comments only led to increased use of perfume. One of the women in our group of five was hospitalized for a few days in 1995 with a severe asthma attack after exposure to a heavy dose of perfume. When she went to the emergency room, her peak flow meter test was so low that the doctor told her that she had just escaped death and he was admitting her to the hospital. In the summer of 1995 I started having vision problems and was diagnosed with bilateral cataracts. I was only 47 and had no family history of early cataracts. Within the next few months, two more people in our group of five were diagnosed with cataracts. One was 45, the other 50. I had my first implant in September 1995 and my second in October 1998. I was very scared because I feared that if I reacted to the implant, my MCS would worsen and I might go blind. But because I only had minimal vision by this point, I decided to take a chance. Thank God, everything went fine. I have had no problems with the implants and enjoy great vision now. The ophthalmologist who saw all three of us stated that he was sure the chemicals being used at the nursing home had caused our cataracts, but he said that he would be unable to prove it. The State of Vermont refused to accept any responsibility for our cataracts.
By this point we were not the most popular people at the facility. Coworkers stopped speaking to us, and jokes were made at our expense. Then a new assistant administrator came on board who asked us if we were aware of internal e-mail messages that some of the women in the facility had been sending to one another about us on the company computers. We had not been aware of these messages, and when we requested copies, our request was denied. We then approached the union to get us copies, and the union succeeded in getting copies only by paying $130.
I find it hard to describe my emotions when I read the e-mail messages. I felt like I had been kicked in the stomach. After I recovered from the original shock, I started to cry. Reading how my coworkers conspired to wear heavy amounts of perfume, all the same kind on the same day, was horrifying. They even named the day according to the perfume they chose to wear that day; for example, one day was named Peach Petals day. They bragged about spraying the bathroom that we used with perfume and about spraying the top of the stairway that we used. They joked how all of us should dress up as “bubble people” for Halloween and they should dress up as cleaning products. One of the worse perfume offenders wrote on the e-mail, “like I said before, shoot the bitches. I know where we can get some bullets.” And this woman is a registered nurse.
We did not obtain the e-mail messages until September 1996. It happened that my mother had died on July 15, 1996. I remember working on July 14, 1996, so ill I didn’t think I could survive because the perfume was so heavy that day. The nursing home that my mother resided in called me on July 14 to tell me that she might not survive the night. My husband begged me to go to the emergency room for myself because I was having such a hard time breathing. My lungs were so congested that he could hear my respirations across the room. When I went home before going to be with my mom, my little girl said, “Mommy, you stink like perfume.” My coworkers had worn so much perfume that day that I had absorbed it in my hair and clothing. But I couldn’t take time to go to the emergency room because I wanted to be with my mother as she was dying. As it turned out, the nurses at her nursing home worried more about me that night than about their patients. I cannot forget how I suffered that night, both from losing my mom and from the physical suffering that I later learned was the result of a malicious prank by my coworkers. When I read the e-mail and recognized the date of Peach Petals day as being the day I was called to the nursing home to be with my dying mother, I felt violated. My grief felt fresh all over again.
Throughout this period when I was having constant reactions, I repeatedly complained to VOSHA, but with no results. I applied several times to the State of Vermont’s Reasonable Accommodation Committee for a reasonable accommodation under the ADA (American Disabilities Act), but my application was denied every time because MCS was not recognized as a disability. When I complained several times to Vermont’s Department of Environmental Health, they did not even know what MCS was. Needless to say, they were no help. We complained to the Sate of Vermont’s Risk Management Department, and they sent someone down to talk to us, but she said she couldn’t understand how perfume could make us sick. We kept complaining to everyone we could think of, but we received absolutely no support from anyone in state government.
Finally, in August 1996, I filed a discrimination charge against the State of Vermont with the Human Rights Commission. I charged that I had been harassed, belittled, threatened, and made the brunt of jokes, as evidenced by the e-mail messages. I further charged that I was forced to work in a hostile environment, as evidenced by a coworker wanting to “kill the bitches.” In addition, I charged that my health problems were progressive and were exacerbated by the collusion of staff to purposely use scents that they knew adversely affected me.
In December 1996 the Human Rights Commission of the State of Vermont voted in favor of my claim, stating that I had been discriminated against on the basis of a disability—MCS. I was elated, but it turned out to be a hollow victory. Nothing changed where I worked. The same staff members continued to wear perfume. The housekeepers continued to clean with the same cleaning products. Air fresheners continued to hang in every bathroom and in many of the residents’ rooms.
When I complained to the executive secretary of the Human Rights Commission, he informed me that the Human Rights Commission could not enforce its ruling. Attempted mediation achieved nothing so finally the Commission issued us a right-to-sue letter, and we decided to pursue a civil lawsuit. Our civil suit is pending, and we have been given a court date of April 2000. We are suing the State of Vermont, the nursing home, and the individuals who were involved in the e-mail exchanges (who are being represented free of charge by Vermont’s Attorney General’s office). Our group of five is now down to three. One woman dropped out because her husband did not want her to pursue the case; the publicity embarrassed him. The local newspaper heard of the story, and it was front-page news. Another woman in our group resigned her position at the nursing home but continues to be involved in the lawsuit. I greatly miss her daily presence at the nursing home because she was very aggressive in her pursuit of justice and was a great support to me. I have been left to be the leader and as such bear the brunt of the hostility at the nursing home. Several coworkers still don’t speak to me. Invitations to luncheons and parties never seem to make it to my mailbox.
As I read what I have written, I know many people will think, “Why did she stay there? Why didn’t she get out?” As I have previously stated, if I had known earlier what I know now or if I had been informed of MCS right from the beginning, I would have been out of there after my first reaction. I did not know, however, what was happening to me. I kept hoping things would improve. I was contacting what I thought were all the right agencies and people for help. I never anticipated that I would be ignored, lied to, and harassed. I never anticipated that my symptoms would worsen and one day not go away. I still work at this facility. I continue to fight every day for improvements, but it is a rare day that I don’t have a reaction. I feel that I am now a prisoner at my job, held by financial considerations. I need to work. My MCS is always with me everywhere I go, so I doubt that I could work anywhere else without having reactions. If I did not have a union supporting me, I would probably be fired if I started complaining. There are not many job opportunities in the town I live in, and after all the publicity, I doubt anyone would hire me. I make an above average wage for this area and receive excellent benefits as a state employee. As long as I can work, I can add to my retirement fund. I am now 52 years old and have an eight-year-old child; I have responsibilities and I must go on.
Linda’s September 1999 update: On August 1, 1999, the Vermont Veterans Home hired a new administrator. I was naturally very apprehensive. I thought that I would have to start all over again to try to educate him about MCS. I was concerned that he had already formed his opinion of me from information that he had received from the former administration and from the State of Vermont. After all, I am suing the place.
I was pleasantly surprised. He met with me and one other coworker who has MCS. He told us that the past was over and that he could not change it. He said that he knew what MCS was and had dealt with it previously. He said that his philosophy was that all co-workers should treat each other like family members because we all spend so much time together. He assured us that we would not be subjected to the same behavior from co-workers as we had been in the past. We were told to report any use of perfume to him promptly and he would talk to the person involved. We have gone to him several times, and he has responded. He sent one woman home to wash off the perfume. When she returned still smelling of strong perfume, he sent her home to change her clothes. He has issued a perfume policy stating “The Vermont Veterans’ Home discourages use of scented products and fragrances by all employees. . . . Management shall investigate complaints of the use of excessive scented products by employees when promptly presented with the complaint.”
The new administrator has also hired someone with years of experience in the field of supervising housekeepers to find cleaning chemicals that will meet the needs of the facility but will not affect us adversely. We have an appointment to meet with this man to discuss cleaning chemicals and to inform him of products that are definitely a problem for us. This is a big step in the right direction. It’s been hard hanging in there, so it’s gratifying to see a major improvement in the situation at last.