Multiple Chemical Sensitivity: A Survival Guide
by Pamela Reed Gibson PhD
Secondary reactions to and effects of sensitivities are the psychological and life consequences of coping with any disabling condition, and may include some of the following:
Chemical and electrical sensitivities may rob a person of a job, friends, education, access to community resources, and even attractive clothing, cosmetics, and home decor. Losses may be deep and require grief work and great flexibility for the person to thrive in spite of such drastic loss.
The physical isolation that results from being unable to tolerate many public environments, and the mental isolation that comes from having a condition that no one understands can be either severe or catastrophic stressors, especially when they are added to the stress of illness and financial loss. Ignorance and maltreatment from others can further strain and isolate the person with sensitivities.
Living with sensitivities requires constant vigilance, especially if reactions are debilitating or life-threatening. People can come to fear places that were once a source of entertainment and fun. Malls, movies, parties, and other outings can no longer be approached light-heartedly if you must be ready to vacate when you encounter perfume, smoke, or cell phones. In addition to the daily stress of such unpredictability, you may find yourself fearing the future, particularly if your sensitivities are spreading to include more and more chemicals. You may fear you will lose even more with respect to your livelihood, home, and physical and mental abilities.
Anger and Frustration
Anger and frustration are normal reactions to loss, misunderstanding, and bodily harm from exposures, discrimination, and misdiagnosis. You will need a way to process this anger in order to avoid having it control you.
Avoidance of environmental triggers can result in behaviors that resemble obsessive-compulsive characteristics, especially to people who do not understand how important avoidance is for those managing dangerous exposures. Precautionary measures may appear rigid and lacking in spontaneity. For example, watching for someone to light a cigarette or pull out a cell phone, phoning ahead to check on the potential pesticide contamination of a building, avoiding a large numbers of foods, airing out mail to reduce the risk of fragrance exposure, and washing new clothes in vinegar and baking soda many times before wearing them may seem odd to some people. If your character is judged on these types of behaviors, you may mistakenly be accused of having obsessive-compulsive disorder.
People with sensitivities may wonder how they got sick and whether they could have done anything to avoid it. Also, those who continue to deteriorate also may distress themselves with questions like, “Why didn’t I get a water purifier sooner?” or “Why did I continue to live in that house with oil heat?” The medical paradigms that blame illness on emotions or assert that “everyone gets what they deserve” or that we “create our own worlds” continue to inappropriately fuel this fire.
Lack of Choice Regarding Emotional Reactions
Most people have at least some choice about which emotions they will express in public. People with sensitivities, however, may be caught off guard by reactions that might be cerebral and could be triggered at any moment without warning. These reactions can cause you to demonstrate chemically induced irritability, tears, or nervousness in situations where there may be negative consequences for these types of behaviors, e.g., in the workplace.
Lack of Privacy Regarding Health
People who have health problems that do not interfere with their work can choose how much of their health information they will make public. For example, if you had an ovarian cyst, you would not necessarily have to tell your boss. However, if your health requires that you make environmental accommodations in the workplace, privacy does not exist. Furthermore, it doesn’t help when journalists, such as John Stossel of 20/20, add public humiliation to the mix by espousing multiple chemical sensitivity as a psychological disorder.
Loss of Choice Regarding Lifestyle
The necessity for avoidance often dictates so much about the specific conditions required for survival, that very few choices remain. For example, one outgoing woman has been forced to endure isolation, which does not suit her or her style, and thus is a source of even further stress. Having once enjoyed working with inner city, underserved populations, she now must be content to work in a carefully chosen, clean, rural environment, if she works at all. In this way she is prevented from making her chosen professional contribution. It is important to note, however, that this does not mean that she will make no contribution. Another woman with MCS said this:
“This illness has changed my sense of choice. I think that choice is extremely important. Prior to [having this] illness, if I worried over or was unsatisfied with a situation [such as a job], I always felt there were many choices and I’d be able to change any situation that was difficult or dissatisfying. Presently, I am only able to work out of my home environment, and I am unhappy with my limitations.”
Negative Attitudes Toward Conventional Medicine
People with sensitivities have to self-educate and advocate for themselves to survive. Having received little or no help, or even mistreatment from conventional physicians, they may come to expect rejection and a low quality of care. Hence, by the time they get to therapy they may inaccurately appear to be angry, oppositional, or paranoid to the potential helpers who do not connect these behaviors with the client’s history of receiving inadequate medical and psychological care.
A sensitized person may become anxious or depressed as a result of a chemical or electrical exposure, but may not be aware of what the exposure was. Because there is no shortage of stress in our society, the person may blame the upset on a psychological stressor, which, although present, did not cause the reaction. The person is thus co-opted or tricked into mistakenly questioning her or his own psychological coping ability. This is extremely important to come to terms with if that person is not to alienate friends and co-workers by blaming social and/or work situations for upsets that are actually caused by chemical or electrical exposures.
The Loss of a Stable, Continuous Identity
Anselm Strauss (1984) discussed the loss of a continuous sense of identity that occurs when someone is chronically ill. With any chronic illness, the person’s sense of self and well-being may fluctuate depending on the current physical state. Because exposures cause people with environmental sensitivities to have emotional reactions that feel so different from their usual state of mind, they may experience a discontinuous sense of identity. When not reacting to chemical exposure for example, people with MCS cannot imagine being so ill. On the other hand, when they do have a chemical reaction, they cannot remember feeling well, or having feelings concerned with growth and direction. Therefore, the sense of personal identity comes to be punctuated by periods of limbo, during which a person suffers and waits for exposure effects to wear off.
These “down periods,” when a person is recovering from a harmful exposure, also are disruptive to relationships. Regardless of a person’s ability to be accessible—or not—during a down period, other people’s lives continue during the recovery process, and repeatedly having to “catch up” socially can be difficult. (See chapter eleven for a discussion of relationships.)
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