Chapter 10

Against The Odds: Identity, Loss, And Possibilities For Growth


This chapter looks at changes in identity that may occur as a result of having MCS. The chapter is based on research with people with MCS who were asked about how aving MCS had affected their sense of self. Themes identified and explained include feeling “hijacked” in that one’s old self seems to disappear, feeling possessed by negative emotions that were not previously part of the personality, attempting to hide the MCS in an effort to appear normal, feeling robbed of the life that one planned, feeling dislodged from one’s position in life, feeling deserted and uncared for, feeling goaded and forced to grow, feeling reconnected with new relationships, becoming re-integrated as a person, and feeling enraptured as a spiritual being.

Excerpt from page 206:

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

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