Who Do We Think We Are?

Want to understand how Multiple Chemical Sensitivity (MCS) impacts and changes people? Want validation for your own experience as a chemically-sensitive person? Want to expand your thinking about the social context of this political hot potato of a disease? Want to leave the unconvinced hand-wringers in the conceptual dust, wasting their breath on the controversy over the problem's existence, while you speed off to new intellectual horizons with the wind in your hair? If so, author and psychologist Pamela Reed Gibson is your gal. Her words are like alpine air to an asphyxiating person and I try to read every last one she puts down on paper.

Last year Gibson and some colleagues published a study* (available through CIIN) on how MCS changes people's sense of who they are. (For those who'd prefer a less academic introduction to her work, the first edition of her wonderful book, Multiple Chemical Sensitivity: A Survival Guide, is reviewed on Amazon and the second edition can be purchased at www.earthrivebooks.com.) Gibson's team hypothesizes that the always-difficult adjustment to chronic illness might be particularly problematic for those with diseases like MCS that aren't understood or generally recognized as real. For the study, they analyzed a couple hundred replies to a questionnaire asking the mostly-female and mostly-white respondents about changes in their identity resulting from the illness.

It does seem, when illness becomes chronic, that one is eventually pulled to divert some attention from the quest to get back to one's "old self" and to try to accept, discover, or create a "new self." Gibson et al. review previous work characterizing that process in the case of accepted diagnoses. The cited researchers collectively paint a picture of a diminished or fragmented sense of self that ideally shifts to a more positive, integrated one that incorporates the effects of the disease. I could recognize myself in the description of an attempted short-cut to the desired transformation: A "well" identity is maintained for interacting with others while an "ill self...copes privately with the demands of the illness." (That's a trick, by the way, that's easier to pull when you can keep the illness invisible.) An important psychological task in making the positive shift is separating one's sense of self from the disease, not blaming oneself. The study authors point out that medical validation for this distancing is often lacking with MCS. Indeed, I'd say, doctors often actively discourage the effort.

Before I touch on the research findings let me say a word about Gibson and friends' refreshing approach to their project. First of all, they come out of a school of thought that doesn't conceive of knowledge as objective, but as socially constructed. Their goal isn't so much to get at any absolute truth as to instigate social change through the illumination of oppressive constructs. They describe MCS as "psychologized" and "delegitimized" condition and the "marginalized" people who have it as "situated in an experience constructed as 'not real' by dominant social and economic forces." They seek a "dialogue with the subjects of their investigation, whom they respectfully refer to as participants, and they want to provide "a forum for the expression of voices unheard in mainstream medical discourse" (the patients', that is). As it happens, I find myself situated in an experience where tortured social science jargon can sound like lute music on a breeze to my marginalized ears.

The eight common themes culled from the questionnaires reveal, for starters, a sad litany of losses in both the material and non-material realms for people with MCS. I found reading about those many losses momentarily overwhelming at times, but, on balance, having them carefully catalogued and clearly articulated was enormously helpful. I felt able to pin down more precisely the nature of the struggles I face and less alone with it all.

Under a thematic category called "loss of a stable, familiar personality," Gibson's group reports participants variously feeling that they had become more fearful, less independent, more self-centered, less tolerant, more mean-spirited, more envious, less kind, less fun-loving, less valuable, and less self-valuing. (Nobody slit your throat yet, experiences of growth are covered in other categories.) One woman is quoted at length describing the difficulty of knowing who she had become when her emotions and behavior had been frequently affected by chemical exposures over a significant period of time. "I am no longer a separate entity," she writes, "I am what I am with the influence of the chemicals now."

Another theme covered losses related to "self-positioning," or relationship with the world. The researchers suggest that losses related to employment were the most impactful on identity, although people also had profound changes in their roles as partners, parents, and friends. Respondents described their wasted potential and inability to contribute what they would have to their families and communities. I couldn't help wonder if identity concerns might not be a secondary consideration for someone who had become indefinitely homeless through a loss of livelihood. In this section and elsewhere I would have appreciated some separate discussion of those in the most dire circumstances (if, in fact, they were represented).

Another theme involving the social self was identified as "emotional suppression to meet others' expectations." Participants related hiding their illness and their feelings about it, even from loved ones, to prevent isolation, loss of relationships, and negative judgments, both spoken and unspoken. One comment I found ironic came from a participant who deprived herself of desired psychotherapeutic help because she considered it crucial not to risk being labeled as "a 'crazy' EI." (I think the same institutions that push us toward psychological help often simultaneously prevent us from receiving it.) The analysand wannabe describes her necessity, somewhat mysteriously, as a "political" one. However--again considering the worst case--I thought of people for whom a job or other means of survival might be threatened by honesty about their illness-related experience or needs.

Some portion of those surveyed felt they had developed various positive qualities, or become better people overall, through meeting the challenges of MCS. I found their testimony inspiring, at least when I could avoid comparing myself to them (or to their self-images). They described themselves as wiser, emotionally stronger, more self-aware, more in touch with nature, less in need of external validation, more informed, spiritually richer, more confident, more life-loving, less materialistic, more politically aware or involved, and as having a stronger sense of self, more balance in life, and clearer priorities. In my reading of these positive accounts I didn't see much emphasis on greater abilities for connecting emotionally with others, which made sense, but seemed a sad comment.

The Gibson study is noteworthy not just for detailing the impacts of a nasty disease but for characterizing the institutionalized mistreatment of the victims in society and the reasons for it. One identity it validates, and even encourages, without explicitly discussing it, is that of "member of a socially-oppressed group." The authors do discuss the "activist" identity taken on by some people with MCS, noting that it doesn't measure up to cultural expectations for hard work and success. But not all MCS patients have sufficiently good health to be active in any sense of the word, and activism that doesn't recognize what it's up against, externally and internally, can be misguided and frustrating. It seems to me that we MCSers need to exonerate ourselves from responsibility for our social oppression as much as for being sick. I think doing so can actually result in a more measured, reasoned advocacy for ourselves, both individually and collectively. For help with the job there's nobody like Pamela Reed Gibson.

*Gibson, PR, Placek, E, Lane, J, Brohimer, SO, and Lovelace, ACE. (2005) Disability-Induced Identity Changes in Persons with Multiple Chemical Sensitivity. Qualitative Health Research 15(4), 502-524.

Check Out Nontoxic Radio

Last week I got a mysterious e-mail from "The Voice of Reason." This apparently-human embodiment of logic and sense had deduced that I might be interested in a weekly radio show airing on a low-power FM station in Massachusetts. Sure enough, "Antidote Radio", hosted by the Voice herself, covers a variety of topics related to Multiple Chemical Sensitivities (MCS). Better yet--for those of us trapped outside a 10-mile radius of WXOJ-LP--the show streams over the internet. On my rare and vintage computer set-up it doesn't so much stream, as drip, but, with patience, work-arounds are possible. (Come on, you sighing MCSer out there, you can do it, your life is a work-around.)

Boy, I understand why those media monopolists are trying to get the internet under control. (Stop them.) I felt a little giddy considering the possibilities of a weekly international webcast representing the perspective of people with MCS. Even if bed-ridden, we could get the latest, hear each others' voices, organize to advocate for ourselves. No cosmetics executive would be able to pull our programming. Maybe, if we were funny, and the tiniest bit subtle, we'd be invited to roast our enemies at their own table, a la Stephen Colbert. (Through a heads-will-roll failure of domestic intelligence the comedian was allowed to satirize our Prez at length, to his face, at a televised dinner.)

Anyway, starting small, support your Voice, listen to "Antidote Radio." You might even hear a conversation with a currently text-bound chatterbox posing as a superhero.