by Pamela Reed Gibson, Ph.D.
James Madison University
Originally part of an article named 'Understanding & Accommodating People with Multiple Chemical Sensitivity in Independent Living'.
Any mainstream discussion of MCS or electrical sensitivity goes immediately to the topic of whether or not they are psychological. This discussion is ill-informed in that it confuses psychological reactions and symptoms with psychological causation and wastes precious time and energy. It is NORMAL for there to be psychological issues for any person who has experienced a loss. MCS is a long-term drawn out experience of multiple losses for most people. All chronic illnesses and disabilities require adjustments, increase demands, and have psychological consequences. MCS in particular may have a significant psychological overlay accompanying the condition that can cause people to confuse it with a psychological condition. I believe there are a couple of reasons for this. One is that for many the target organ most affected by chemical exposures is the brain. Brain reactions include changes in mood, energy level, aggression level, appetite, ability to think and remember, and many others. Another reason is that MCS is so demanding in terms of the changes it requires and so incongruent with the kind of culture that we live in that people often develop personality changes in response to the stress of having the condition. For those with electrical sensitivities, the problem is even worse. I call these two types of effects the direct and indirect psychological effects of having sensitivities.
Direct Psychological Effects
Direct reactions are those that people experience as a direct effect of chemical exposure, e.g., crying/depression after an exposure to natural gas. Direct effects can include depression, anxiety, panic attacks, irritability, restlessness, confusion, anger, and others. One woman in my research described being outside when pesticides were being sprayed on a neighboring field and becoming so angry that she actually was out of control. From that point on, she experienced this whenever she was exposed to pesticide. Irritability, anger, depression, and panic are common reactions to chemical exposures for those with MCS. It is important for people to be able to identify as many of their direct effects as possible in order to manage their own behaviors. A clear understanding of one's own reactions helps in a) avoiding or escaping dangerous exposures, b) understanding where a negative feeling is coming from, and c) controlling one's behavior in order to avoid negative consequences. It is very important for people NOT to attribute their chemical reactions to other social or personal variables. For example, if irritability is present from a perfume exposure it is important to understand that this is the cause in order to prevent misbehavior directed at others.
Indirect Psychological Effects
Secondary effects come from having to cope with the direct reactions and with sensitivities in general over a period of time.
Loss. People with MCS often lose relationships, work, hobbies, public access, belongings (because they are intolerable chemically or because of financial loss), their ability to control their physical appearance, travel opportunities, contact with family, and educational or retirement plans. For some it is an ongoing process of losing almost everything. Others are able to make some changes yet preserve the essence of what was important in their lives. But most people with MCS will have some mourning to do regarding loss.
Isolation. Physical isolation is a hardship that compounds the mental isolation of having a misunderstood condition. When added to other stressors such as possible poverty and loss of home and/or work, it can be extremely traumatic. The isolation can be even worse for those with electrical sensitivities because of their difficulty using phones or computers for communication.
Fear. In an industrial society constant vigilance is required in order to avoid chemical exposures. There are no more light-hearted outings when part of the person's attention needs to be on guard for possible devastating exposures. In addition, the person faces uncertainty about the future. Given the "spreading phenomenon" associated with MCS, people know that they may eventually face even more losses with respect to livelihood, home, and physical and even cerebral abilities.
Anger. The loss, misunderstanding, physical symptoms, discrimination, and misdiagnosis naturally lead to anger and frustration. People need ways to process and come to terms with their anger so that it won't control or define them.
Obsessive-compulsive behaviors. For self-protection, people may develop behaviors that appear obsessive-compulsive to those who do not understand the importance of chemical avoidance. Survival with sensitivities may require making phone calls ahead to check on pesticide applications before going to a public place, watching for smokers in a crowd, sniffing for perfume, washing clothing in baking soda to clean out manufacturing chemicals or residual scented laundry fumes, avoiding electrical appliances, and other such protective actions. These behaviors certainly conflict with any type of spontaneity and can cause others to make judgments about people's psychological health that may not be accurate.
Lack of choice about public behavior. If people suffer from brain reactions to chemicals, they may face embarrassment about becoming emotional in public as a result of exposures. Irritability, depression, apathy, and fatigue can all surface from exposures and leave the person with less choice than preferred when it comes to behaviors in public contexts. Neurological reactions are not voluntary.
Lack of privacy about health. For some physical illnesses, privacy exists. However, for visible disabilities and conditions that require workplace accommodations, this privacy does not exist. Co-workers may make negative judgments about people who ask for accommodations perceived to be unusual. Media programs that debate the legitimacy of MCS or ES cause further anger, frustration, and depression for those who live with it.
Loss of choice regarding a comfortable or chosen lifestyle. People often must make so many changes to cope with MCS that they no longer are living a lifestyle that feels congruent with their sense of self. Yet the changes may all have been necessary for survival. One woman in my research described this problem:
This illness has changed my sense of choice. I think that choice is extremely important. Prior to 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 authorities/conventional medicine. Those with MCS have generally received such poor treatment from medical providers that they may have anger and distrust toward representatives and practitioners of conventional medicine.
All resources are taken up with coping with health. If all time, money, and energy are consumed by the effort to survive, higher functions such as spiritual and personal growth may be put on hold. Although the person intends for this to be temporary at the time, if the survival crisis is ongoing, those higher needs can remain on hold indefinitely.
The loss of a continued stable sense of identity. Anselm Strauss (l984) has discussed the fluctuations in identity that come as a result of chronic illness. The exposures in MCS often cause brain reactions that feel foreign to the person experiencing them. Since reactions fluctuate there may result a discontinuous feeling of identity. When not reacting, the person actually somewhat forgets the experience of being that sick. But when in the middle of a reaction, previous experiences of wellness and the person's previous base of personal growth and direction cannot be accessed. Identity therefore fluctuates through periods of limbo, when the person waits for reactions to wear off. Relationships are interrupted during these times while others' lives continue. The necessary interpersonal catching up is difficult and the person with MCS may be seen by others as unreliable or as an inconsistent presence.
Given all of these challenges, it is difficult to maintain a familiar or viable identity. As with any disability, the person with MCS must come to terms with a new sense of self that includes the disability and honors remaining strengths while letting go of lost abilities. This is very difficult to do in the midst of physical symptoms, financial loss, personal rejection, and loss of roles. Consequently, many have a very difficult time and suffer considerable distress.
The bad news. My students and I asked people with MCS how their sense of self had been affected by having MCS and categorized the results according to themes. Some expressed feeling dislodged and isolated from everything they had previously depended upon or thought of as self. Others felt resentment at having so little control over not only external life circumstances, but also internal states of mind due to brain reactions to chemicals. This was a source of great suffering for people who had worked on becoming a particular kind of person only to have their personal growth hijacked by involuntary states of mind such as irritability and confusion. People felt robbed of the lives they had planned; younger people had to leave careers and older people had to scrap retirement plans. People were traumatized by the realization that the MCS could or would eventually rob them of absolutely everything including relationships, career, hobbies, travel, athletics, art, and retirement plans. Not everyone is able to face this realization and find anything positive in it. In fact, most people in their right minds would not find it positive. People struggled with feeling deserted and disconnected to people and to community. Some hit bottom and were not able to recover. Lives disintegrated under the pressure and sadly some wrote of their fear that they would eventually have no option but to commit suicide.
The not so bad news. You can see that the obstacles to be negotiated in the process of coping with MCS are over-whelming. Some people understandably disintegrate under the pressure. But almost surprisingly, some report finding actual personal growth in the experience. People in our research learned new information, developed new skills, found new friends who better understood their problem, found new tolerance for others, grew an appreciation for small blessings that really matter, found self-esteem despite being different, and even grew spiritually from the experience. This group was able to re-build their identity so as to accommodate the MCS and grow either in spite of or because of it. Goodhart and Lansing (l997) in their book on helping people with chronic illness describe these people as the phoenixes rising from the ashes. This is the goal of the advocate who works with people with MCS to increase the probability that they will be phoenixes and somehow thrive in the midst of incomprehensible hardships.
- Help the person identify and take credit for what he or she has done well in regard to coping with MCS. It is an almost impossible task to live a productive life with such a limiting condition. To succeed at all is cause for celebration.
- Help the person identify brain reactions occurring in order avoid mistakenly attributing them to incorrect sources.
- Help the person process/face loss, anger, and disappointment. Refer to counseling/therapy if needed.
- Help the person remember and "keep" the qualities they like about themselves while re-structuring the self to include a disability.
- Help the person learn to value the self by new yardsticks when the old conventional measures of productivity no longer work.
- Help the person to find creative ways to combat the isolation.
- Help the person to find creative outlets.
You can see that the life impacts of having MCS and/or ES are extensive. Yet people with MCS have found ways of coping even without any cultural support. A number of people with MCS and ES have made tremendous contributions to disability and environmental advocacy and policy. Some of the MCS advocates are people who began support networks when there was absolutely no knowledge or support of any kind for those with these hidden disabilities. How much easier would their paths have been had some support and advocacy been available to them?
Although there are no official data on what percentage of people with sensitivities commit suicide, it happens when the stresses become too severe and the person sees no way out. Many of these people have no money, no home, no support, and certainly no advocates. One supportive person may be a lifeline to someone who is quickly losing her or his place in society.
By informing yourself about MCS and ES you are helping to ease the way for people who could otherwise fall completely through the cracks of our system. You could be the only person in someone's life who actually believes him or her and is willing to listen and brainstorm about possible actions. Having just a basic understanding of the problem and being willing to learn from people with MCS and ES will place you in an excellent position to help.
It is expected that many more people will develop MCS in coming years due to environmental contamination. Many of the people in my study have had MCS for decades (the average time was 15 years). Therefore, if MCS is environmentally caused, many people suffered their initial sensitizing exposure many years ago. How many more people are developing MCS now as a result of increasing air, water and food contamination? And events such as the World Trade Center destruction set up large portions of the population to develop environmentally induced illnesses that may or may not develop into MCS. It is crucial that our institutions recognize and respond to the plight of these people in order to be positioned to help the increasing numbers who will request help. However, I do not expect that this recognition will begin in the hierarchical/professional institutions such as universities and medical centers, but rather in grassroots types of settings where people have ongoing contact with people with the problem. The MCS support groups have begun the fight for recognition of this disability. centers for independent living are perhaps the next level where this work can continue with your help.
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