Against the Odds
Identity, Loss, and Possibilities for Growth
Having a chronic illness or disability is bound to have some negative repercussions on a person’s sense of self. However, having a condition such as MCS or EMS that is delegitimized and demands some degree of isolation, creates even more challenges. In Phase III of my study, participants were asked how their sense of identity had changed as a result of having MCS. This chapter describes some of their responses. You may find that you have experienced some of these feelings, or you may have entirely different perspectives on how MCS can affect someone’s sense of identity.
Hijacked: My Life Is on Hold
Until I Get Well
Some people with MCS were deeply involved with buying equipment, visiting physicians, and pursuing the “cure.” Simultaneously, these individuals had a sense of, “This is not really me. This awful thing happened to me and it has eclipsed everything I know about myself.” People desperately wanted their old selves and their old lives back. They felt tired, empty, and strange—so much so that it was difficult to have anything to say to other people. The following quote from a woman with MCS captures the essence of people who felt their lives were “hijacked”:
“I don’t feel like I have a sense of self anymore. Sometimes I really hate myself. (I hate what I have become due to this illness). Deep down, I am the same person (feelings, wants, etc.)—but I am so overwhelmed by having to live in isolation and feel so empty and lonely that I also feel the old me is gone forever. I miss people. There is no way to deal with this except to take one day at a time. I talk to a few people on the phone, but am unable to see anyone (except very occasionally one or two people like myself).”
Possessed: How Did I Become So Irritable?
People with MCS described experiencing unwelcome negative emotions that either were primary reactions to chemicals or secondary reactions to the trauma of having MCS. Both reactions were extremely frustrating and unwelcome. These reactions were also contrary to their self-image in terms of what people had wanted to become, before they became ill. Anger and irritability were two primary complaints, as one thirty-eight-year-old woman who has had MCS for three years described:
“I have a squirrel in the yard, who will come and take food from my hand. I am also the type of person who never gets upset when my kids spill something accidentally. During my sickest time, I would actually aim for squirrels and birds while driving in the car.”
One person described the discomfort of having to focus on self-care. She says, “I feel very ‘needy’ and I was never . . . that way before.” Likewise, a woman who has had MCS for more than seventeen years explained,
“I never thought of myself before. It was always my family or some friend who needed some special attention. Now I must always consider, ‘How will this affect me?’ So I feel that I have become self-centered, but it is necessary to survive with any happiness.”
Two women who have MCS and are quoted below describe other unwelcome, long-term secondary changes:
“I am a lot more cynical, I do not trust anyone anymore. My sister said she used to think I was the nicest person she knew after [so and so]. She said it appears that I still try sometimes, but I am just not as nice as I used to be.”
“I have [a master’s degree] and sometimes I can’t even write a paragraph! My whole sense of security and who I am has changed. My husband says I have lost my adventuresome spirit. I am paranoid about exposure to pesticides. Food allergies radically alter my personality.”
Paradoxically, although primary reactions to chemicals often include intrusive anger or irritability, some people experienced a “blunting of emotions” as a long-term phenomenon. These people felt “robbed” of aspects of their essential selves.
“My ability to feel on an emotional level has changed significantly. I am intellectually emotional rather than really feeling, and I feel flat most of the time when I’m not having reactions. When I’m having reactions, anger, confusion, and frustration are most prominent, and often much out of proportion to the event [to which I am reacting].”
—Fifty-two-year-old woman with MCS
“MCS has deeply affected my ability to enjoy life. It has strangled my fun, loving, kind, true self. I find I can now be very jealous, mean-spirited and depressed very easily.”
—Forty-six-year-old woman with MCS
One woman, after suffering two acute incidents of prolonged exposure (both skin and respiratory) to a pesticide, described losing her entire personality, energy, and ambition for six months. It took two years to recover her full “affective” or emotional life.
Many study participants expressed anger at the unfairness of having so little control over their behavior, despite having spent years developing their personal growth.
Driven Incognito: I Won’t Let Anyone Know
Some people with MCS hid their sensitivities and pretended to be well in order to “pass” for normal. For example, they kept toxic appointments at hairdressers, they failed to speak up about exposures that were affecting them negatively, and they generally hid their condition to avoid other people’s censure.
People hid their reactions and sensitivities to deflect negative feedback from others, to maintain some semblance of a “normal” life, and for the benefit of others. Unfortunately, the same people who hid their sensitivities described enduring excruciating pain (e.g., headaches) privately while continuing to function. One woman, for example, explained that you should never let your pain interfere with your relation to someone else and for this reason, she always cheerfully “did” for her family even if she was suffering:
“I believe with all my heart, you should never put your pain onto someone else. As sick as I am, I’m a pleasant person. It keeps our marriage working and happy. No matter how I feel, I still do my housework. I still cook. . . . I can tolerate a great deal of pain. This is the way I survive.”
—Fifty-eight-year-old woman with MCS
People with MCS seem to share this theme with those who experience both CFS and FM. Asbring and Narvanen (2002) found that women with both CFS and FM reported that stigma led them to attempt to hide their conditions in order to reduce shame and anxiety and maintain their pre-illness identity.
Robbed: This Is Not the Life I Planned
No children, when asked what they would like to be when they grow up, reply, “I want a disability.” The realization that MCS is going to seriously alter your previous perceptions of career, home life, hobbies, travel, athletics, and retirement plans can be traumatically shocking. MCS can mean having to redo all of your goals and plans in midstream. (It can be somewhat like finding out halfway across a lake that you are not going to make it to the other side.) The anger, loss, fear, and confusion that are generated can be overwhelming.
“I feel I have lost my sense of identity. My life is so sheltered and alone compared to the way it was before the MCS. I have very limited contact with people. I feel I am unable to express myself. I have had to learn to live basically at home in my safe environment in order to survive. Sometimes I feel I have lost contact with the rest of the world and what is going on around me. It has caused me a lot of emotional stress. Luckily, I have a very loving and understanding husband who allows me to let out my angers and emotions and listens to me and tries to understand what I’m going through. This is my way of dealing with things, and I am determined I am going to get better.
—Thirty-four-year-old woman with MCS
“Working near or with smokers, perfume users, in moldy dusty areas, and the refusal of everyone involved to understand or moderate behavior has determined my life course. [People’s behavior regarding my sensitivities is] very unsatisfactory to me and has left me destitute financially: Limping along, struggling from exposure to exposure, from job to job, has created an insurmountable obstacle to my accomplishing what I wished to carry out.”
—Sixty-two-year-old woman with MCS
The pervasive loss that is caused by long-term illness can be an insidious trauma (Root 1992); yet sufferers of delegitimized illnesses receive very little recognition or support. It is no wonder that people who are chronically ill sometimes become involved in addictive behavior. One man, for example, became a heavy user of alcohol and marijuana after he was involved with a chemical accident that destroyed his health and left him confused, unable to concentrate, and plagued by nightmares. In another case, a woman with MCS became addicted to overeating:
“I feel trapped at home and extremely bored—as a result, I have seemingly developed a compulsion to overeat. I’m sure it’s to fill the gigantic void I feel in my life. I also beat up on myself a lot and I am extremely unhappy. Through it all, though, I always wear a smile and am cheerful around others, while on the inside, I have a great big ache.”
—Fifty-one-year-old woman with MCS
Dislodged: I Don’t Know Who I Am
Along with feeling “robbed” of their identity and sense of self, people with MCS described being severely “dislodged” from all of their familiar roles. Another way of describing this is that they experienced a loss of self-positioning. That is, we all play multiple parts in our lives and relate to ourselves in social, professional, parenting, romantic, sexual, and other roles and relationships. These roles and relationships, however, may disappear when health no longer is robust enough to fulfill them. For example, a teacher who was poisoned by an oil heating system says, “My career is now destroyed because my health has been ruined. I don’t feel life has much purpose and wish I could just die and get it over with.” A forty-seven-year-old woman who has had MCS for fourteen years says, “I feel worthless. I was a school psychologist who was consulted by students, teachers and principals all day every day. I am now isolated and desperately miss the stimulation and mental gymnastics [I used to experience at work].”
One woman, with MCS since adolescence, pointed out that her life was greatly affected by continually having to wear a mask in public that protected her from inhaling unsafe chemicals. She said, “Having to wear a mask, covering my face, takes away identity. People stare [at me], children are even afraid.”
One role that American culture particularly values is mental acuity. For some people, however, even this diminished once they become chemically sensitive. For example, a forty-seven-year-old woman with MCS for five years says, “For me, I was always proud and secure in my intelligence. This illness has taken away one of my most prized possessions. My mind was part of my identity.”
Even material possessions, such as clothing, furniture, and houses, are important elements of identity in Western culture. Having to give up makeup, fashion, and/or a beautiful home were stressors for many individuals. Generally, however, many people moved beyond these values:
“Having lost my home . . . and all the pretty things and antiques, I find that life and happiness is not in possessions, but within each individual. If I dwell on this loss I am unhappy, but if I dwell on how to make tomorrow better, well, I am happy.”
—Sixty-nine-year-old woman with MCS
Sometimes, physical circumstances were so seriously challenging that they posed further trauma. A fifty-three-year-old woman with MCS for more than fourteen years said,
“I sat in my car for a year! I would sleep at another [chemically sensitive person’s] house at night and use my car in the daytime so that I would not inconvenience them too much. I also had to sleep in my car for a month.”
The sexual roles and relationships of MCS people were also affected by their illness due to their declining energy levels and other physical problems. Unfortunately, having tension in this area often can cause further stress in a person’s close and ongoing relationship. As a rule, all roles that demanded attention and energy were affected by MCS.
Deserted: No One Cares About Me Anymore
People with MCS struggled with what it meant to lose connections to people they knew from work, social circles, and even their families. Friends often deserted them. Even children, spouses, in-laws, and parents were not immune from potentially writing off those with MCS as hypochondriacs. Desertions by loved ones caused people to face the void of isolation and, often, suffer from the lack of something or someone to hang on to.
“I am no longer the same person I was before. My life used to be full of friends, family, children, flowers, and I loved my job. Since the carpet was installed, my life has been one nightmare after another: I was treated like a crazy person, I became terribly thin, the more I tried to get help, the more I was labeled as crazy. My friends pulled away from me, I changed jobs four times, and now [I] try to work out of my house. I feel like my life has no meaning, no future, no one has offered me hope, my phone never rings, the people I cared about most have stopped coming to see me. I even look different. I can no longer have my hair or nails done, my weight has gotten out of hand, my clothes don’t fit. I cry a lot alone. There is no one to listen, no one to care and, worst of all, nothing anyone could do anyway.”
—Forty-one-year-old woman with MCS
Some people became most desperate and “hit bottom” when they were forced to face the fact that people who they once thought would stand by them did not.
“I feel like people laugh at me and they don’t believe me. I’m made fun of by co-workers. [I was] refused a promotion because of my health and was told so by my supervisor. I have [a] poor memory. I just mainly stay at home since I’m on sick leave from work.”
—Forty-two-year-old woman with MCS
“It’s had a devastating effect on my life. My dreams have been shattered. Life has merely become a matter of survival, as if I’m in a prison camp. My self-esteem has been damaged due to hostility and ridicule from co-workers and management. I was formerly optimistic and confident in my ability to overcome obstacles. Years of poor health and increasing, persistent obstacles have made me sad and bitter. . . . The future is bleak. As my health worsens and money continues to dwindle, I fear that I will end up with only one option.”
—Thirty-six-year-old man with MCS
Goaded: MCS Is Forcing Me to Grow
In Phase I of my study, we had the nerve to ask whether people had experienced any significant personal growth as a result of having MCS. Some respondents were not amused and responded with statements, such as, “Hell no, why should I, stupid?” and “No. MCS is a royal pain in the tuchas.” And, “This question annoys me.”
Some respondents were humorous, including, “I (have) thirty-pound fluctuations in my weight three to four months at a time.” And, “I had a small growth on my arm.” Some participants, however, did report experiencing actual personal growth from the trauma. People read, listened to tapes, and/or developed their spirituality:
“The isolation has taught me to be very creative. The unpredictability of both illnesses has taught me to enjoy today, and do the best I can each day. I’ve learned to focus on what I can do and not on what I cannot do. I’ve developed my spirituality and have decided God’s goals for me are different than the ones I had for myself.”
—Fifty-five-year-old woman with MCS
Sometimes, you can experience personal growth that occurs as a result of having MCS, whether you seek it or not. For instance, one chemically sensitive person said, “I now know more than I ever wanted to know about housing construction, food growing and processing, skunk behavior, clothing manufacturing, how to use aluminum foil tape, variations in water heaters, the life and habits of mold, etc.” Other respondents said:
“Of course! Since I have been ‘evicted’ from society, I spend most of my time reading—half are books and articles about chemical poisonings and sick buildings—at least now I know I’m not crazy! The other time I spend reading spiritual literature, thinking, meditating, and writing—the spiritual interests I never had enough time to have in my life before. I am trying to use this to my advantage to change my life.”
—Forty-one-year-old woman with MCS
“I’ve become humbler and appreciate beauty more in nature, music and art. My disability gave me more opportunity to read (in the sauna), to take longer vacations in Europe (where they have electric trains with no smoking cars), and I tried hiking in the Alps because I thought it might help my MCS, which it did. At the same time, I discovered a marvelous activity and some unspoiled mountain villages without motorized traffic. I’ve also had more time for vacation photography.”
—Fifty-nine-year-old woman with MCS
“If I had continued to have a comfy life, I don’t know if I would have embarked on this path. My illness was something that certainly pushed me in that direction—I was desperate for answers. Now I’ve learned so much about positive thought and God’s love, etc. . . . this exploration of mine has not caused me to wake up one morning symptom-free, but it has given me the strength, grace, and tenacity to cope with all of it day by day.”
—Twenty-four-year-old woman with MCS
Having a chronic illness can foster personal growth in ways that include everything from specific personality changes, such as becoming more assertive due to having to advocate for oneself, to life-transforming discoveries of spirituality. Common themes reported from respondents included appreciating who your real friends are, getting priorities straight, taking more time to live in the moment and savoring the “little things,” valuing supportive family members, learning new skills that are MCS-compatible, and living a healthier lifestyle in general. “Living in the present” and “acceptance” were related themes that many respondents said they experienced. For example, one woman with MCS said:
“Perspective is really everything. You can still use time wisely in many ways: I have worked with acceptance of where this disease may lead, but refuse to wallow in worry and fear. Instead, I simply try to live each day so that I don’t regret any aspect of it tomorrow. And, I try to keep things in perspective by asking myself ‘If you knew you had two weeks or two months (etc.) to live, how much would this matter? What changes would you make and what things would you do that you’ve postponed?’”
Reconnected: Defining New Relationships
Most people went through some version of Goodheart and Lansing’s (1997) disorganization and reorganization process of coping with MCS (see chapter eight), although some seemed to get stuck in the disorganization component. Many people, however, began to rebuild fulfilling connections with others who have and do not have MCS. Sometimes, support groups were the initial connections. Family members, who at first had trouble understanding, sometimes came around and were supportive. Other times, people made new friends by getting involved with MCS activist work.
One important element of growing, meeting your needs, making wise treatment decisions, etc. is finding your “pack” (Estes 1992). When Estes talks of “finding your pack” in her book, Women Who Run with the Wolves, she is referring to finding your rightful group of people with whom you can express your essential self. The isolation caused by breaking old and no longer healthy connections leads to the process of eventually finding where and with whom you really do belong. But, you first have to face and accept who you really are.
Fortunately, there are those who apparently have the sense to see you as deserving respect and affection (despite the fact that you’re not quite what’s expected). These people may be family, friends, or new acquaintances (with or without MCS) who have enough maturity not to write you off for having a disability that requires specific considerations. Many multiple chemical sensitivity activists, support group leaders, and members have formed healthy connections with others, both in and outside of the MCS community.
Integrated: Feeling Like a Person Again
Some people are able through acceptance, support, patience, time, and spirituality, to emerge from the maze of chemical injury with a sense of self intact -– perhaps even a more expanded self than before. For some it took a long time, while for others, it occurred surprisingly quickly. People learned to construct a self and a life that included (perhaps was even driven by, but was not obliterated or smothered by) MCS. This process included learning new skills, healing, and understanding the early pain, accepting that you may not be a material success or that you may fall short of realizing the goals you established before you became ill.
Commonly, people developed great pride in their accomplishments, successful coping skills, ability to educate others, and the strength required to survive the trauma of a life-rearranging condition. In the early stages of MCS, people rarely predicted feeling this positive about such a debilitating condition. For example, one woman remembers a phone conversation she had after several years of having MCS. The woman with whom she was talking said to her with surprise, “Oh, you still want to get rid of this illness?” With some consternation, the respondent said, “Yes, of course, don’t you?” The woman replied, “Oh, no. I wouldn’t trade everything this illness has taught me,” and proceeded to list the high points of having MCS. It would be eleven years before the receiver of this message would be able to see things in a similar light.
Many people described their lives as “integrated,” not only despite, but commonly because they had MCS. For example, one woman said, “I have been physically damaged, but I have rebuilt myself as a result. I am more conscious [of] what I eat/drink, and how the body is a wonderful entity.” Other individuals agree:
“As a challenge MCS is hard to beat! I can’t begin to list all the ways I’ve grown but here’s a sample: Reconnect with the earth— air, water, animals, flowers, and beauty. Tremendous deepening of faith and learning to deeply value all aspects of my life. Learning to release fears of loss, death. Dismantled (more or less) type A behavior. Learned to live in today. To set boundaries and deprogram codependency (you can’t mind other’s business on a teaspoon of energy). Made some wonderful friends in other MCS folks. Learned to feel my feelings and to love myself as I am rather than for what I do (former workaholic). The suffering has been mind-boggling, but the learning has been miraculous. A much healthier and real relationship with spouse and children and friends. ’Tis a gift to be simple.’”
—A woman with MCS for many years
One woman made MCS sound like something everyone should want to have as she itemized her MCS-induced areas of personal growth:
“Tremendous spiritual growth, self-awareness, more of an ability to love and take care of myself. The ability to listen to my body, intuition and higher self. The realization that doctors don’t have all the answers and that I am my best source when questioning a decision or treatment. Seeing that everyone has some kind of challenge to work through, be it physical, emotional, mental, or spiritual. Choosing my friends more wisely and dealing with family and people in general in a new and different light. Learned about higher purpose and serving humanity and the planet.”
—Thirty-six-year-old woman with MCS
Enraptured: Connecting to My Spiritual Self
Some people went beyond forced growth or even acceptance/integration and described a spiritual connection that sustained them, and made MCS bearable. One forty-year-old-woman who has had severe MCS for ten years said, “The loneliness and despair that I felt when I was not in control of my body or environment has been replaced by an awareness that I can depend on God for help and can come through things.” Others with MCS also describe how spirituality and/or religion has helped them to live more successfully:
“The most important thing I have found is being assured my God is always by my side. If I ever feel lonely, angry, etc., . . . I ask Him to rename it, He always responds. He is a constant companion to me and will be to anyone else. He has made my life so different and so much more pleasant. He has not removed my burden, but He has certainly helped me bear it.”
—Sixty-nine-year-old woman with MCS
“My most ingenious practice is not mine, but God’s. He granted me a healing experience that began the healing process in my body. Without it, I would still be pretty much incapacitated. Even though I’m not completely well yet, I’m 100 percent improved over three years ago.”
—Forty-one-year-old woman with MCS
“Tremendous personal growth! I have spent a great deal more time working on my inner self rather than my outer self. I have found a perseverance that I never realized that I had. My faith in God has become much stronger, and I’ve changed my lifestyle to involve myself in those things that I now feel are really important.”
—Thirty-three-year-old woman with MCS
Most, but not necessarily all, of the people who made it to a place of self-forgiveness, thankfulness for good relationships, and a sense of new purpose wrote about a new spiritual life. They were not referring to a “God cured me and now I can use chemicals” mentality; they were writing of the humbling experience of surrendering to divine love and intervention that then initiates healing and growth. Respondents continuously described coping with the impossible—with divine support—through all of their difficulties, forgiving themselves and others, redefining their purpose and, in the end, being thankful for MCS because it put them on a path of personal growth.
For many, living with and coping with MCS required some form of faith. That is, MCS asks the impossible, and they need something extraordinary to support them in their healing. Many found this support through a spiritual commitment, which often took the sting out of their worst fears. After all, it has been said that even death no longer has power over you, if you have faith in a Higher Power. Coping with MCS is so difficult that prayer seemed to provide the daily guidance that people needed to face continuing daily challenges.
Many people mentioned prayer as their most important practice when facing MCS. But some of the emotional numbing that can occur in MCS can make building a spiritual connection even more difficult. Prayer, to be effective, requires an open spirit. Passionate emotion can help people open spiritually. Things don’t have to be serene for you to open this door. If you are constricted in what you can feel, however, the challenge may be greater.
You may want to pursue inspirational reading from your own religious or philosophical perspective. There are some very helpful books from many traditions, including the Christian, Jewish, Eastern mystical, among others. (See Appendix C for further reading and resources.)
Where Does This Leave You?
Although this chapter addresses the pain of loss of self in disabling sensitivities, I hope that it also offers encouragement with the knowledge that despite tremendous obstacles, many people moved beyond their losses to rebuild themselves. If your reactions are mild, then hopefully you will not experience the level of isolation and loss that some people have had to face. If you have a more serious problem, perhaps knowing that many people have achieved tremendous growth in spite of their problems will provide you with some encouragement. You may want to assess where you are now in terms of your sense of identity. Ask yourself the following questions:
Ø What have you given up?
Ø What parts of your self are no longer expressed due to your losses?
Ø Have you experienced any personal growth despite the MCS?
Ø Do you feel totally confined or can you identify ways that you have actually grown from the experience?
Ø Would you want to give up everything you have learned since developing MCS?
Ø If you have grown, how can you continue to support that growth?
Ø If you have not grown, can you do something to set yourself on a path of personal or spiritual growth?
There must be something you have developed as a result of having sensitivities that you may not have gained otherwise. Make a list of these variables. Ask yourself what skills you now have that you did not have before. Does anyone else need them? One woman found someone who did and said, “I have become the PTA environmental health liaison at my daughter’s school and that role has proved to be a tremendous help. It challenges me and I am constantly acquiring new information and networking with new contacts.”
Most people with MCS eventually become tremendous resources. There is definitely someone who needs your unique knowledge. Make a list of ten people who you think may benefit from hearing what you know and see who is open to receiving it. Even if only one person listens, you will have educated someone. (See Appendix C for further reading.)
Sometimes accepting yourself just as you are is the first step toward change. For some reason, it seems that experiencing surrender is necessary before change can occur. That is, try to:
Ø Accept that you have environmental sensitivities
Ø Accept that they may be lifelong
Ø Accept that there may be some unknown reason as to why you have them
Ø Accept that whatever that reason is, it will be revealed to you
Ø Accept that you are still a worthwhile person even with the disability
Everyone constantly lives in danger. Having a condition such as MCS or EMS just makes the danger more poignant and makes you more aware of it. Fully accepting this existential approach may lead you to a greater acceptance of the reality of death. Once that happens, there is nothing left to fear. You can begin to face your condition with true strength. One woman describes it like this:
“There was a long time when I was afraid that MCS was going to kill me. I worried and worried, convinced that even my friends with cancer felt better than I did, and that there must be some terrible thing in me that was really serious. I remember the day that I said, ‘Well, then I will die.’ It was total acceptance of that possibility. I see now that I needed to do that to take away some of the illness’s power over me. It is fourteen years since then and I haven’t died yet. In fact, I see that I have a contribution to make, and as long as I’m still kicking, I’m going to make it! As long as I am able, I’m going to say my piece.”
—Forty-year-old woman with MCS
The sad fact is that not everyone makes it to a point of considering personal growth. Sadly, there are suicides in the MCS community. However, some of those who have been close to suicide have eventually turned their situations around such that they are no longer in despair. There is no simple formula for getting to the point of acceptance. At minimum, it requires enough physical improvement to at least be able to think straight and have some positive experiences. For most people, however, there is a way. Each person’s way may differ, but all ways seem to share the components of surviving “trial by fire,” enduring forced self-reliance, furthering education about toxins and health, and forging a spiritual connection.
Some people with MCS and EMS have managed to make tremendous contributions that help other people with the conditions as well as the public in general. They are inspirations to others, and examples of what is possible even with a severely limiting disability.
For instance, Cindy Duehring (who unfortunately died in 1999) was a marvelous example of the kind of contribution that can be made, despite extensive MCS-caused limitations. She won the Right Livelihood award, known as the Alternative Nobel Prize, from the Swedish parliament for using her illness in the service of humankind.