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If You Weren’t Crazy Before You Were Sensitized, “You Are Now”
Coping with environmental sensitivities can be extremely difficult. It is understandable if you are feeling distressed. The condition demands the impossible, while threatening to take away your resources in the process. The first step toward facing the adjustment challenges of sensitivities is to give yourself credit for the coping you have already done. Consider the following: What have you done well? What changes have you made that have improved your health or prevented it from deteriorating further? What very difficult challenges have you faced with creativity and strength? If you credit yourself for what you have already done, it will be easier to move forward and to face more challenges.
People without sensitivities fail to realize that there is nothing specific about you that caused you to develop this problem, and you are not inherently different from people not affected. Just as pregnant women are really no different from non-pregnant women, in that they are simply in a different condition, sensitivities can affect anyone. Before you developed sensitivities you were basically just like other people. The need for some people to distance themselves from individuals with disabilities and illnesses and from accident victims is perhaps a way for them to pretend that these circumstances can’t or won’t happen to them.
Some people also subscribe to the “just world” phenomenon - the illusion that bad things happen only to those who deserve them. This belief provides an artificial escape from potential danger, for the “good” will be spared. People often use this theory to distance themselves from rape victims or to blame them, i.e., if the rape victim had only locked her car doors, then the rape wouldn’t have happened. Of course, this is not even close to the truth since many victims are raped in their homes by people who know them, including dates and spouses. Somehow, however, the “just world” phenomenon perpetuates an illusion that is less painful than the truth.
Given the difficulties that environmental sensitivities can cause, this chapter is designed to help you think about how you might react psychologically to possibly extreme limitations and to decide whether or not to see a therapist. The last quarter of this chapter is written specifically for therapists working with sensitive patients.
Although MCS/EMS is not a psychological illness, it does not preclude the possibility that you have some unrelated psychological baggage with which to deal. We all do. As long as your other personal issues—whatever they may be—remain unresolved, they will interact with your environmentally-imposed limitations and create further discomfort. Taking care of any unrelated issues can lighten your psychic load and free up more energy for coping constructively with your physical health. Just as importantly, learning how your sensitivities interact with and affect your psychological vulnerabilities will help you to cope more successfully.
Have you typically been a shy and sensitive person who now needs to perform the thankless and assertive job of asking for special accommodations to survive? If your modus operandi has generally been a passive style, i.e., to give of yourself, do what is asked, and never complain, it may be extremely difficult to come to a point where you are comfortably able to state your needs assertively. Whether it is because of personal habit, style, discomfort with being the center of attention, or the belief that you don’t deserve “special treatment,” the task of negotiating your social life will be more difficult without at least a little work in the psychological arena.
A therapist can help you work on being more comfortable with assertive behaviors. There are a number of good self-help books that could help you with this as well. Another option is to practice on your own using what George Kelly, one of the major personality theorists, called fixed role therapy. In fixed role therapy, the therapist writes a sketch of a person who embodies the qualities that the client wants to develop. So, in this case, you would write a page-long description of a person with good assertiveness skills. In this sketch, you should describe the ideal person’s thoughts as well as behaviors. For example, you might write something such as, “Sally finds it easy to explain her needs, as she realizes that her health depends on it. Negative feedback from others is not upsetting to her because she knows that it is common for people who are different to be treated negatively.” After clarifying the written sketch, the client then role-plays being the ideal person with the therapist. Next, the client pretends to be this person for approximately two weeks, and has several therapy visits during this time to discuss how the process is going. You could experiment with doing this on your own and see how it feels to try a different behavioral approach in one area of your life. If you do try it, carry your sketch with you, refer to it often, and be aware of how it feels to try a new behavior.
Another tactic of changing assertiveness behaviors might be to identify with an animal you can relate to that is assertive and that you admire (but be careful who you choose to tell that you are doing this, as some people may demean you in the process). For example, you might be a lion who is protective of itself, its home, and its young. Or, you might be a scrappy badger who doesn’t hesitate to use its bite if threatened. Being assertive means facing your biggest fears—one of which could be rejection. Most often, however, people will respect you for standing up for yourself, and you are likely to have at least some advocates in the process.
Self-Esteem and Self-Worth
Self-esteem and self-worth issues may surface if you are treated badly by others in response to your accommodation requests. Individuals with poor self-esteem, or with past abuse issues may find this behavior extremely painful; while people with a “thicker skin” will be less devastated by others’ behavior. Learning how to “stay tough,” regardless of input from others, will help you to stay on track and to get your needs met. Abuse issues can be tackled with the help of a competent therapist or through the use of self-help books and/or support groups. It is interesting to learn how “thick-skinned” people think about others’ feedback. They often have great ways of keeping it in its proper perspective, seeing it for what it is, and going forward. For example, when I get negative feedback on a journal article, I am usually devastated. My friend Arnie, on the other hand, assumes that he got a bad reviewer. (See chapter ten for more on self-worth and identity.)
How about being an overachiever? Have you ever proven your worth by achieving, creating, doing, going, and otherwise perhaps overdoing? If your dynamic is that of the overachiever, a health condition that cuts your productivity will be extremely painful because it will block your usual way of coping. If you draw your self-esteem from achieving important goals, and your achievement is cut in half (or lost entirely), either you have to do without half (or all) of your self-esteem or adjust the way in which you measure it.
Many people measure their achievements by the contributions they make in their professional careers. You can attempt to adjust your career so that it interferes less with your health by working more at home, working different hours, or working in a different area. If your job is less than ideal, you may have to rethink it entirely, i.e., you may have to find a job that is not damaging to your health, and/or move toward a profession that is compatible with environmental health. Everyone with sensitivities has something to offer; and your productivity does not have to go completely downhill forever.
On the other hand, if you are a procrastinator and have trouble getting things done, the health problems you have may provide an endless source of good reasons to continue procrastinating. You might have to resort to “to do” lists and schedules, with rewards built in for reaching milestones in your progress. A realistic, daily “to do” list can be a rewarding help. Make a list of tasks you would like to accomplish; as you complete each task, check it off. When everything is checked off the list, you are finished. (It is not fair to add more tasks for that day.) Any reward system that you can build into this exercise will help. Behavioral therapists recommend that their clients make a reinforcer list, which is a list of items or activities that are personally rewarding. The items on this list must be available and possible to achieve, i.e., if you can’t travel, your reward can’t be a trip to Florida. Some suggestions include spending time with friends, buying or borrowing a book you have been wanting, taking a bath, reading a magazine (without perfume inserts), or setting aside a specific amount of money toward something you want to purchase. Whatever it is you choose, be sure to reward yourself for your accomplishments.
Individual personality styles may dictate the type of emotional pain people with sensitivities experience. For example, extroverts may have a more difficult time with isolation than will introverts; but introverts may find it difficult to explain their needs and protect themselves in relationships. Isolated extroverts can experience tremendous emotional pain from the lack of stimulation. Although it can be very difficult, it is crucial for extroverts to find resourceful and creative ways to have contact with others. My favorite example of this is from a woman in my study who arranged horse trail rides in the mountains “because life ain’t no spectator sport.”
MCS/EMS can drag you so far down that you forget that there may be some things that you can do. Search for them and try to keep yourself from becoming completely isolated. Most people will not be riding horses in the mountains, and many of your activities may technically qualify as “spectating.” Enjoying and sharing sights with other people, however, is still living, and may keep you at least vicariously connected to the outer world. (See chapter eleven for more on social support.)
If the effects of environmental sensitivities could be summed up in three words, those words might be loss, loss, and more loss. It is traumatic to lose access to almost everything you have ever wanted, worked for, and thought you would have. Of course, not everyone with sensitivities loses everything. In fact, you will see in chapter ten that some people even feel they have gained something from having MCS. But, there is no denying that loss is a common theme in people’s descriptions of the life changes that occur post-MCS. Some of the losses people experienced were described in detail in chapter three.
Other psychological issues that might result from having MCS are included in this chapter. Although I did not ask about EMS in my early data collections, it is clear through follow-up that a portion of persons reporting also experienced it. The following descriptions are normal responses to living with a poorly understood and limiting condition. They are described here to “normalize” them as much as possible and to help sensitize therapists to what their clients might be feeling.
Psychological/emotional reactions to having sensitivities can be divided into direct and secondary reactions. Direct reactions are those that people experience as a direct effect of chemical exposure, e.g., crying and depression after an exposure to natural gas. Secondary reactions come from having to cope with the direct reactions as well as with the long-term reality of living with sensitivities. It is important to understand both types of reactions.
Usually, direct reactions are experienced within a very short period of time after being exposed to a chemical, food, or other incitant. The timing can vary for each person. Some people react almost immediately, while others have more delayed reactions. For the delayed reactors, it is more difficult to sort out exactly what caused the problem. Direct reactions can manifest as depression, anxiety, panic attacks, irritability, restlessness, confusion, anger, and other responses.
“There were pesticides being sprayed on a field near my home. I was outside doing yard work and all of the sudden I started to shake and became extremely angry. Angrier than I have ever been. I seem to have lost control. I wanted to put my fist through the wall, anything to release the pressure. I started screaming and throwing things. It was awful. I never felt so out of control. I find this happens when I’m exposed to pesticides.”
—Thirty-four-year-old woman with MCS
Alison Johnson (1996) found that feeling irritable and angry and, to a lesser extent, even violent, were not uncommon reactions to pesticides, perfume, foods, and petrochemicals. Depression and panic attacks also were listed as reactions to a number of exposures. Johnson asked 239 participants about psychological reactions to ten substances, including pesticides, perfume, natural gas, foods, mold, pollen, dust mites, PMS, diesel, and tobacco smoke. The following percentages of participants experienced reactions to at least one of the incitants, while many participants encountered numerous emotions simultaneously: 73 percent became irritable, 60 percent felt angry, 29 percent felt violent, 26 percent became paranoid, 62 percent were depressed, 41 percent felt anxiety/panic, and 29 percent felt suicidal.
Sometimes reactions depend upon the timing of the variables, such as hormonal cycles:
“Each exposure can cause different results depending on how I feel that day, how long I’m exposed, and where I am in my menstrual cycle. After ovulation, I become increasingly more sensitive. I’m most vulnerable a day or two before my period. I schedule appointments and activities according to my cycle.”
—Thirty six-year-old woman with MCS
Direct reactions also may go beyond simple emotional reactions to mimic serious cognitive deficits, such as those seen in delirium or schizophrenia, although these seem to be less common. A respondent who worked at a chemical lab described this:
“I felt out of touch with reality during the ten years I worked in the chemical laboratory. It felt like my brain was floating—it didn’t feel a part of me. . . . I talked slow (still do). Walked slowly. Couldn’t follow instructions, trembled unbelievably. Couldn’t remember things I needed to remember. I slept anytime I sat down. I was definitely out of touch with reality.”
—Fifty-two-year-old woman with MCS
It is important to be able to identify as many direct reactions as possible, as this will help you to sort out your true emotions from the reactions your brain is having to harmful substances. Although cumbersome, keeping a log of activities and reactions may help with this. Psychological reactions that are environmentally triggered may appear as the result of intermittent exposures, or may be chronic if you live or work in a toxic building. Gas-sensitive people who live with gas heating or cooking appliances may have headaches, depression, and irritability that remit somewhat while they are at work or out of the house for extended periods of time. This is a clue that the exposure is in the home. It is very important to identify or rule out environmental causes for psychological reactions before you attempt to counsel yourself or someone else about the problem.
Direct reactions often feel out of control. The challenge is to not allow the stresses of a reaction to cause you to behave contrary to your personal ethics. It is important to emphasize that we are still responsible for controlling our behavior. MCS/EMS is not an excuse for violence, acting out, or perpetrating harm on others. Of course, this is a gray area because with cerebral reactions you may not be in full control. However, that is all the more reason to take responsibility by practicing chemical avoidance, for having a strategy to remove yourself when you do get exposed, and to remember that you are vulnerable during a reaction and need to monitor yourself carefully in your behavior. This includes being careful when you are driving, interacting with others, verbalizing, and making decisions. It can be a great help if a close family member or friend can recognize when you start becoming confused and help to remove you from an exposure. However, not everyone has someone to do this, and the bottom line is that it is not someone else’s job to control us.
Secondary Reactions and Effects
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) discusses 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.)
The Role of the Psychologist
Mental health professionals perform a variety of roles in relation to MCS, such as assessments (including neuropsychological), rehabilitation counseling, insurance-related screening for disability, advocacy, or therapy. There is a great need, however, for educated therapists to provide support to those who are coping with the devastating losses reported by chemically and electrically sensitive people.
I receive periodic telephone calls from women with chemical sensitivities who ask for referrals to therapists in their areas who will understand their condition. (I have even received calls from homeless women who still regard therapy as a priority.) By the time I receive one of these phone calls, the life disruption is likely to be severe, and without some sort of supportive intervention, the person may be at risk for committing suicide. Unfortunately, psychological intervention for people with MCS often has been anything but supportive. In fact respondents in Phase II of my study felt particularly troubled by contact with mental health practitioners. Respondents who sought psychological help contacted a total of 549 mental health providers. Of these, only 17 percent of the practitioners were educated about chemical sensitivity, and 36 percent were in some way helpful. People reported feeling harmed by mental health providers in various ways, including having their symptoms of chemical sensitivity ignored or deemphasized (63.6 percent), receiving psychiatric labels (54.5 percent), being given psychoactive medications (44.3 percent), having psychiatric hospitalization suggested (17.6 percent), and/or being admitted to psychiatric hospitals for symptoms of chemical sensitivity (14.9 percent).
One respondent reported that she sought out psychiatric help to deal with the effects of the illness on her life, but that her reports were discounted. Instead, the practitioner suggested MCS was solely caused by problems in her relationship with her mother.
The Role of Evaluator
The most negative treatment from providers occurred when the provider was in the role of “evaluator.” One woman with MCS describes her experience dealing with a less than helpful psychiatrist:
“‘Severe hypochondriac’—the psychiatrist from social security administration wrote this on his report. It was humiliating and frustrating because he just did not understand the illness and really didn’t care. I have discovered that women (seems to be especially if you are single) seem not to be taken seriously. I have been told by so many medical doctors, who didn’t know what was wrong with me in the early years or didn’t understand the illness, to get a job (I was so sick that I had to leave my great job) and to get married!”
—Forty-year-old woman with MCS
Inappropriate psychological labeling was particularly upsetting to respondents, whether from mental health providers, physicians, or other professionals. Over half of the respondents from Phase I of my study received mental illness labels, including depression, psychosomatic illness, schizophrenia, panic disorder, neurosis, posttraumatic stress disorder, mania, delusional disorder, and “it’s all in your head.”
In many cases, people were psychologically labeled simply because they claimed to be affected by chemicals, regardless of whether they had psychological symptoms. For example, some respondents were described as having “olfactory delusions” because they were able to smell chemicals that others were not. In some cases, the evaluators took it a step further and labeled people as “schizophrenic,” due to olfactory delusions. Respondents described experiencing erosion of self-confidence, ostracism, anger, and extreme trauma as a result of this kind of treatment by health providers. As an extreme example:
“That doctor has not given me one psychological test, yet he says I have a delusional disorder. He granted my disability on psychiatric terms. He even told me in an interview that I should be placed in a mental institution. I am outraged at the incompetence of our medical doctors.”
—Fifty-three-year-old woman with MCS
Gender-bias in mental and physical health diagnosis is not uncommon. Many of the problems receiving short shrift from the medical profession are those that afflict women. The history of women’s health reads like a comic book of error and mishap.
Unfortunately, this is the heritage of the health system in America, especially with women being doctors for only a relatively short period of time (Lawrence and Weinhouse 1994). It is not surprising that women’s health complaints may still be ignored and attributed to psychological variables, as in this instance:
“The label I received was the ‘It’s in your head’ kind. I tried to talk to my doctor about some of my symptoms and concerns, and he gave me the name of a psychiatrist. Later, when my ex-husband complained of the same symptoms, this same doctor sent him to an allergy specialist.”
—Sixty-one-year-old woman with MCS
Unfortunately, if therapists rely on professional journals for help treating people with MCS, they will find little useful writing on helping or coping with this condition. In fact, there are a number of researchers committed to proving that MCS is a psychological illness. To this end, they have conducted and published “studies” that, in some cases, have managed to show that people with MCS demonstrate some psychiatric symptoms. These symptoms have then been used to make the case that MCS is a psychiatric illness. However, simply demonstrating that people have some symptoms is not enough to classify MCS as a psychiatric illness. To truly make the case that people with MCS are psychiatrically disturbed, all of the following conditions would have to be satisfied:
1. Rule out any and all physical causes for the psychiatric symptoms.
2. The psychiatric symptoms would have to cause the MCS.
3. The group with MCS would have to display more psychiatric symptoms than people with other chronic physical illnesses.
There are no studies that have demonstrated these conditions. In fact, researchers rarely have the understanding that MCS patients should even be compared to others with chronic illnesses or disabilities.
Problems with Psychological Research and Diagnosis
Some of the problems with the research and clinical work that conceptualize MCS as a psychological condition are discussed below.
Even before some studies begin, there may be the problem that “experimenter bias” will affect their accuracy. Experimenter bias means the person conducting the study has an interest in proving a particular conclusion. That is, if your mental stability was being questioned and a researcher interviewed you with a preconceived notion of your psychological state, the outcome would not necessarily be accurate. It is as if the biased researcher says, “I think you are mentally unbalanced; let me interview you and prove it.” Then, based on the interview that follows, the researcher concludes that indeed you are mentally ill. Experimenter bias can affect both the selection and examination procedures of studies and does not result in valid work.
Inadequate Medical Screening
Often “traditional” medical tests will not indicate chemical damage even when it is present. To date, we have not found a consistently reliable test that will identify MCS damage. Even cholinesterase tests, which should accurately show when someone has had an organophosphate or carbamate pesticide exposure, do not always show low levels of acetylcholinesterase (AcE). People with MCS do show physical indicators of the damage caused by chemical exposure, but often only during in-depth testing that examines the body systems likely to be affected. Examples of these in-depth tests include immune profiles, SPECT scans, close examination of the nasal mucosa, and red blood cell (rather than plasma) measures of nutrients.
Not Listening to What Patients Say
When researchers have their own agendas, they rarely listen to what MCS patients are reporting. For example, Simon, Katon, and Sparks (1990) believe that “psychological vulnerability strongly influences chemical sensitivity.” To support their theory, they note the case where a large number of plastic workers reported MCS-like illnesses following the introduction into their workplace of new plastic materials containing phenol, formaldehyde, and methyl ethyl ketone. Although the researchers said plastics workers who developed MCS had more prior depression and anxiety and reported more psychological symptoms than those who did not develop MCS, the largest predictor of who developed MCS was the preexistence of medically unexplained physical symptoms.
Despite the fact that many of the complaints were neurological (including headaches, fatigue, dizziness, nausea, dyspnea, and cognitive disturbances), the authors summarize that “no medical diagnosis or immunological abnormalities were found to account for the vast majority of the workers’ systemic symptoms.” Given that the testing was done soon after exposure, and that immune tests do not measure neurological damage, it seems that the “panel of specialists” did not listen to the workers. That is, rather than listen to workers and tailor the testing to the complaints (i.e., use neurological exams), the “panel of experts” chose to use inappropriate evaluation methods (immune tests).
No One Is Listening to Gulf War Veterans
Gulf War veterans cannot get officials to take their claims of chemical exposure seriously. In fact, not only is the government not listening to what the veterans have to say, but they also deny any possibility of chemical warfare or damage at all. For example, even though numerous Gulf War veterans and their partners complain of caustic sperm, the official response to them is, “There is no reason to test the sperm.” Almost humorously, Sylvia Copeland, chief of the CIA Persian Gulf War Illnesses Task Force, explained that the CIA did not speak with anyone who was in the Gulf as part of its investigation, but reviewed only “intelligence” information. When questioned as to what was “intelligence,” she replied that it was anything written on paper by the staff “from foreign sources.” In other words, the CIA made sure that they did not find out anything that they did not already know. Representative Christopher Shays (R-Connecticut), chair of the Subcommittee on Gulf War Veterans Illness, replied, “That doesn’t seem very intelligent.” He summed up the importance of the CIA input into the hearings as follows: “Your statements here are almost meaningless then, because you’re telling me that you can only check with foreign sources. But when we have our own troops who claim they’re exposed to chemicals, you’re not allowed to talk to them” (House Government Reform and Oversight Subcommittee 1996).
Fitting New Problems into Old Categories
Often MCS patients are called somaticizers and hypochondriacs. In my view, these labels represent nothing other than a smug and condescending attitude. It is important to remember that many diseases formerly thought to be the creations of somaticizers were appropriately identified as soon as suitable medical technology was invented. For example, it is now formally recognized that the temporomandibular joint (TMJ) can cause headaches, digestive problems, neck and back pain, and a host of other symptoms. Chronic fatigue, formerly seen as psychologically caused, is now recognized as a physical condition by the Centers for Disease Control. In fact, a host of immunological abnormalities has been found in chronic fatigue patients when sophisticated testing is used for blood work. Another disease formerly thought to be of psychological origin is multiple sclerosis (MS). Now proven to affect the brain and/or spinal cord and to cause partial or complete paralysis, MS may first manifest as psychiatric-like symptoms for as long as the first ten years (Klonoff and Landrine 1997).
Unfortunately, Gulf War veterans with physiological problems also have been labeled as psychologically disturbed. Dr. Frances Murphy, neurologist and Director of the Veterans Affairs Environmental Agents Service and of the Persian Gulf Referral Service, testified in Congressional hearings to this effect. She said that 187,000 gulf veterans have been seen in ambulatory care clinics complaining of fatigue, skin rash, headache, muscle and joint pain, memory loss, shortness of breath, diarrhea and other gastrointestinal complaints, sleep disturbance, and other complaints that had become “very familiar” to VA physicians. Regardless, Murphy also said that the Gulf War veterans did not have a “pattern of unexplained illness,” rather that “a large number [of Gulf War Veterans]” had “well-established physical and psychiatric conditions.” It seems that the veterans’ diagnoses were shunted into other preexisting categories, such as anxiety disorders, rather than the physicians examining, in detail, the pattern of symptoms actually experienced by Gulf War veterans. Patients with MCS are treated likewise. These two women describe the forcing of MCS symptoms to fit into accepted psychological diagnostic categories:
“The first experience [I had] at the U. of WA was frustrating. I thought the interview/consultation was straightforward. [However,] the evaluation statement [included] symptoms I have never had and did not report, such as sweaty hands, rapid heartbeat. . . . These seem to [have been] added [only] to support the [man’s] theory about MCS being “posttraumatic” or anxiety induced. I am well aware of situations in which I feel anxious, but anxiety about chemicals does not participate in my illness.”
—A woman with MCS for six years
“I was asked if I would be willing to have a psychiatric evaluation when I applied for social security disability. His assessment was ‘a very long history of what appears to be severe panic disorder with agoraphobia.’ He felt that attributing my ‘migraine headaches and breathing difficulties to various irritants reached an almost delusional proportion.’ At first I felt quite angry at his assessment, but then realized this is quite typical of the narrow-mindedness the medical profession in general has taken. Note: The psychiatrist recommended the use of Xanax and Prozac. I said ‘No thanks.’ He says I have very poor insight into my illness and I have difficulty seeing it as a ‘psychiatric disorder.’ He thinks it’s likely I would respond well to medication treatment. This doctor was quite dramatic. While I was sitting in his office, he pulled his wallet out of his pants and slammed it on his desk and said he was willing to ‘bet this on it,’ referring to his drug treatment program for me. I felt that little gesture was really ‘professional.’”
—Forty-five-year-old woman with MCS
Some researchers completely discount the physiological problems of MCS and instead inappropriately label MCS people as having psychological disorders. For example, Rosenberg, Freedman, Schmaling, et al. (1990) believe people with MCS have personality disorders. They say that some MCS patients are dramatic and hysterical, and thereby explain their symptoms with emotion and flare. The authors label other MCS people as obsessively detailed and fastidious. They say these patients bring in lists of symptoms and a timeline of how they got sick, and describe their illness with less emotion. The authors say that these people appear “to be primarily ideational (obsessive/paranoid) character.” The MCS patient, therefore, regardless of personal style, is doomed no matter how they present their illness, as there always is a label to be applied to delegitimize their experience.
Patient Experience Is Not Considered
During Test Interpretation
People’s individual responses to items on psychological tests often are not interpreted within the context of the patient’s life experiences. For example, some items on the Psychosocial Adjustment to Illness Scale (PAIS) (Derogatis 1986) on the Health Care Orientation subscale ask about a person’s attitude toward medical care. In Phase I of my research, people with MCS did not have much good to say about the medical treatment they received. Normally, this is interpreted on the PAIS as having a cynical attitude toward providers. The problem with this interpretation, however, is that the evaluators assume that adequate health care exists for the patient’s condition, and that providers have given the patient appropriate information. Because most physicians are unfamiliar with, or do not believe in MCS, results from the Health Care Orientation scale need to be interpreted in context of these realities. The patients’ recognition that they have been poorly cared for is probably a sign of good reality testing rather than a sign of a cynical attitude.
Contamination of Depression Inventories
By Inclusion of Somatic Items
Most measures of depression, such as the Beck Depression Inventory, contain items that ask about physical symptoms. These types of tests, however, assume that the physical symptoms are caused by the depression. If these same measures are used with people with physical illnesses, they receive elevated scores on depression for having physical symptoms. Therefore, these scores are not valid measures of mood disorders. To avoid this problem, some researchers use the Geriatric Depression Scale or some other measure that is not contaminated with somatic items. But many researchers don’t. Research using inappropriate testing methods to diagnose depression in people who have MCS or other physical illnesses is invalid because it fails to control for physical illness.
Using Control Groups from the
A number of studies have compared those with MCS with a control group matched by age and income, but not physical illness. These studies show that people with MCS are more upset than those without physical illnesses, but nothing more. To prove people with MCS had psychopathology, you would have to compare them with a control group of people with other chronic physical illnesses. (Of course, since these experimenters do not believe that MCS is a physical illness, in their minds this would not be a suitable control group.)
Ignoring Studies that Support
Researchers sometimes choose to ignore studies that clearly support a physical explanation for MCS. For example, some studies test for and incorporate both the physical and psychological issues involved with the disease. My two favorites are these:
In an early study Bertschler, Butler, Lawlis, et al. (1985) found that people with MCS appeared healthier on psychological testing after receiving treatment for their sensitivities with environmental medical techniques, including avoidance, neutralization, and nutritional supplements. That is, patients had better mental health simply by reducing their sensitivities.
Similarly, Bell, Peterson, and Schwartz (1995) tried to separate physiological from psychological indicators by examining self-reported illness caused by odors in a non-clinical population (people who were not MCS patients). They found that people who had cacosmia (an exaggerated sense of smell) were more likely to have close family members with physical as opposed to psychological illnesses. Physical illnesses that run in the family could result from shared heredity or a shared toxic environment (or both). (See chapter two for the causal theories of MCS.)
Attitudes and Beliefs about Disabling Sensitivities
We are a culture that wants desperately to believe that a positive attitude will make everything all right. To that end, we have every kind of mind over matter training that you can imagine. Love, positive attitude, and optimism are all supposed to mitigate the effects of serious disease. Those with positive attitudes are supposed to recover faster from cancer. Books prescribe affirmations that correspond with illnesses. My favorite is Louise Hay’s affirmation for constipation, which is: “I willingly release the old and welcome the new.” This is not to put down the work of Louise Hay, as there are people with AIDS who credit her work with keeping them alive. This attitude can be tricky, however, when you are nose deep in a neurotoxic exposure. Because neurotoxins alter brain chemistry, simply trying to maintain a positive attitude will not be enough to stay healthy. In one instance, a woman with MCS was determined to use affirmations to help her avoid having a reaction to diesel fuel. She was faced with having to drive several hundred miles without air-conditioning in the summer, and decided to say affirmations aloud the entire twelve hours. When she arrived at her destination, she did indeed have a somewhat smaller systemic reaction than normal (because she was breathing through her mouth the whole time). But her throat was raw from breathing diesel fumes through her mouth and saying affirmations for twelve hours.
It’s hard to fight biochemistry, as described by this participant:
“I used to experiment with laying on of hands, mental suggestions, Science of Mind, etc. I really believed people could become well with a change of consciousness. I was wrong, and I sincerely regret some of my advice. . . . I realize I have no control over the illness. I thought my mind could handle it. I cannot prevent the reactions when I’m in the chemicals. I’ve tried all my training and nothing works.
—A woman with MCS for twenty years
Janice Strubbe Wittenberg (1996) says that studies show that 50 to 75 percent of all problems that manifest as pain or illness are “emotional, social, or familial in origin.” How could this ever be proven? Evaluators may think that problems are from family of origin, for example, but then we must again examine the possibility of evaluator bias. There is, in fact, evidence for evaluators missing serious illnesses. In one study (Fishbain and Goldberg 1991), for example, 62.5 percent of people with the label of “conversion disorder” later developed organic brain disorders compared to 5.3 percent of those with the labels of “anxiety” or “depression.” A conversion disorder diagnosis is given when a person appears to have lost the function of a body part, such as an arm, but no medical reason can be found for the dysfunction.
I am not against affirmations, positive thinking, and other mental and emotional interventions. In fact, I support them if they are used wisely. But when Wittenberg says, “Things can hurt you if you think they can. This means it is possible to decide against reactivity and extreme fatigue,” I have to disagree. Most people with MCS didn’t think chemicals could hurt them until long after the damage was done. People who are sick should not be punished by theories of positive thinking that imply that they thought their way into the illness. A 63-year-old woman with MCS says, “I’ve been told I didn’t have to have a swollen tongue and hiatal hernia if I didn’t want to. Do these perpetrators believe it’s interesting and loads of fun to have tubes stuck down one’s throat?”
If positive thinking techniques can be combined with wise management and chemical avoidance, then you have a great package for coping. (See chapter twelve for more about coping.)
Summary for the Client: How To Make Psychology Work for You
Although there are some theories to be wary of when considering psychotherapy, there is no denying that if you find the right therapist, you may have great success with better coping and dealing with your health problems. The following seven points are a checklist of how you might use psychology to your benefit.
1. Work with a supportive therapist to sort out family-of-origin psychological issues that are unrelated to your sensitivities.
2. Determine how having sensitivities might complicate the other psychological issues you discover in therapy. Learn how these issues might complicate your coping with the constraints of illness.
3. A therapist can help you to directly cope with MCS. For example, developing skills that will help you ask for the accommodations you need and figuring out how best to do it; learning time and energy management skills; dealing with losses, anger, mistreatment, fear, and frustration; and deciding how much effort you want to put into maintaining particular relationships.
4. You have the right to interview and choose a therapist. Many therapists offer either a free or reduced fee consultation in which you can meet and decide whether to work together. You are hiring the therapist; you can interview him or her in this session to see how you feel about the therapist’s ideas and general approach. Before you go to your first meeting, however, be sure to inquire about the office environment and ask about any special accommodations you may need. For instance, you may want to ask some of the following questions:
Questions to Ask Potential Therapists
Ø “What do you know about chemical sensitivities and injuries?”
Ø “Can you accommodate my special requests?” For example, you may ask if the office is fragrance-free or if pesticides or petrochemical heating is present. If you are EMF sensitive you may need to ask about the possibility of turning off florescent lights, cell phones, and computers. Is the therapist willing to see you outside of their office if their environment is not safe?
Ø “How would you work with someone with this problem?”
Ø “What is your orientation?” Although today most therapists are eclectic or integrative (meaning they use a mixture of techniques), some subscribe closely to one theory that more or less guides most of their work. For example, if a therapist tells you that they are psychoanalytic, you most likely will hear a lot about your hidden defenses and your attraction for your opposite sex parent. If the therapist is “client-centered,” this means that they subscribe to the theories of Carl Rogers. These therapists are likely to listen to you and reflect back to you your feelings as they understand them. Note that there are many different types of orientations to which a potential therapist may subscribe.
5. Do not work with a therapist who doesn’t “believe” in MCS or other environmental sensitivities. If you had diabetes, would you go to someone who didn’t believe in diabetes and planned to lead you to believe you could eat more and more sugar? Many anti-MCS articles have advised therapists to get to know their clients and build trust by never directly challenging their beliefs. Then slowly, the therapists try to get the clients to change their belief that chemicals are making them ill.
6. Carefully research any therapy suggested to you. For example, most people with MCS who reported their experiences with antidepressants, did not do well on them. This does not mean that you wouldn’t respond well to certain drugs; but before taking them, you at least need to know as much as you can about them and what the experiences of others have been. (See chapter six for further information on antidepressants.)
7. Share this chapter with your therapist. The more she or he knows about the problem, the more effectively you can be helped.
Good coping involves psychology, social support (see Chapter 11), spirituality, identity (see Chapter 10), understanding chronic illness (see Chapter 8), getting enough decent medical help to prevent decline (see Chapters 6 and 7), cleaning up your home to prevent further exposure (see Chapter 4), and understanding the political situation in relation to MCS. It is a large package and every piece is important. By looking at it one piece at a time, perhaps you can negotiate your way through the maze of surviving—and even thriving—in spite of difficult odds.
Therapist Summary: Suggestions for Treating Clients with MCS/EMS
This is a brief introduction to therapy considerations for counseling people with sensitivities. You can learn more by listening to people who tread the path of the impossible—living in the modern world while it is poisoning them. Goodheart and Lansing (1997) say that the treatment tasks for the person with chronic illness and their therapist are fourfold:
1. Facing the assault on self and identity
2. Working through the reorganization or reshaping of self
3. Reconsolidating the new self and achieving stability of self despite an unstable body
4. Providing follow-up structure/process to maintain progress made
More succinctly, Goodheart and Lansing say: “The adaptive goal of psychotherapy for these patients (the desired outcome) is the stability of self and identity in the face of the body’s instability and uncertain course.” The person with sensitivities needs to be helped to retain positive qualities that they had prior to developing them, and to develop new ones in response to coping successfully with their health.
Do Not Jump to Conclusions About
a Personality Profile
Psychologists are fond of finding personality profiles for everything. For example, when sick building syndrome (SBS) came to the public’s attention researchers searched for a personality profile that would make some more susceptible to SBS than others. The profile was never found. In fact, Scandinavian studies have found that SBS is influenced by the following variables: gender, preexisting asthma or rhinitis, a history of atopy (which is a type of allergy), job category, photocopying, VDT use, and handling carbonless paper (cited in Ashford, Heinzow, Lutjen, et al. 1995). To best assist your client with chemical or electrical sensitivities, it would be beneficial to everyone involved if you did not rely exclusively on information from extraneous personality profiles.
If You Can’t Be a Positive Support, Refer
the Client to Someone Who Can
Just as “neutrality” is often interpreted negatively by other oppressed groups (e.g., gays/lesbians), not taking a stand will be interpreted negatively by the client with environmental sensitivities. Although some researchers/writers suggest gaining MCS patients’ confidence before slowly trying to get them to change their belief that chemicals are making them sick, your patients will see through this. You will waste their time—and yours—and you may be ethically responsible for making them sicker if they experience exposures at your suggestion. If you cannot be supportive, refer your client to an associate who can.
Beware of Treatment Recommendations That
Ignore the Clients’ Complaints
There are many treatment recommendations available that ignore the MCS client’s experience and complaints. For example, Black (1996) suggests, “Treatment of coexisting psychiatric disorders, including depression and panic disorder, will help to reduce symptoms of illness and disability.” What if the symptoms, however, are caused by chemicals to begin with, as MCS clients assert? Black continues, “Patients with ‘reactions’ (e. g., panic attacks) to chemical exposures, for instance, may be able to tolerate exposure to disagreeable odors once the panic attacks are blocked.” In this instance, Black is ignoring the evidence that solvents can cause panic attacks (Dager, Holland, Cowley, et al. 1987). Black further says, “On the other hand, patients with somatization disorders can be monitored for the emergence of new symptoms, which can then be placed into context. This will help to reduce unnecessary testing and other medical procedures that may contribute to the patient’s disability” (p. 354). By “placed in to context” I assume that Black means ignored, since the person is assumed to somaticize their psychological discomfort. Similarly, “reduce unnecessary testing” can be taken to mean that these new symptoms are not to be investigated and thus the possibility of overlooking end-organ disease development is great. Given that patients of Heuser, Wojdani, and Heuser (1992) and of Levin and Byers (1992) have developed autoimmune disorders, the ethics of this approach are questionable at best, and they are complicit in using psychology to silence those harmed by contamination at worst. Practitioners can and should be held liable for ignoring indicators of potential disease.
Utilize the Skills You Already Have
People who have other disabilities and chronic illnesses share many of the same problems of chemically sensitive people. Although each chronic illness is unique, any special knowledge, training, or experience you have in any area of disability/chronic illness will increase your sensitivity and will be helpful in understanding this population. Therapists will see that people with sensitivities share the financial and work difficulties of those with a variety of conditions. Similarly, disappointment with medical providers is common in those whose conditions are poorly understood, or can be maintained, but not cured. Isolation, too, is common for anyone of limited energy or mobility.
What distinguishes sensitivities from other illnesses is probably a unique constellation of variables, including the lack of access to safe buildings, financial and job resources, and medical information or treatment; the personal isolation; poorly understood physical suffering; and the inability to tolerate items that most people not only take for granted, but are practically the basis of our entire material culture.
Even if you will not be doing testing and evaluation of MCS patients, it is important to understand something about the effects toxicants have on people’s bodies, particularly the nervous system. The field of neurobehavioral toxicology explores the effects of toxins on the brain and behavior. Arnold (1997) explains the importance of being able to provide resources on toxic injury to physicians, as they may not be well informed about likely neurological effects.
If you will be providing testing and evaluation of people who have had toxic exposures, you may need more training, particularly in the area of neuropsychology, as well as knowledge about the appropriate measures for toxic injury. It would also be beneficial for you to understand the overlap between toxic injury and other conditions on test results, and to be current in your knowledge of neuropsychological testing and toxic tort (court litigation regarding toxin-related injuries).
Know that Women with Many Chronic Illnesses are
Misdiagnosed as Having Psychiatric Disease
Klonoff and Landrine (1997) have written what I value as a crucial book for anyone working with women’s health. The authors discuss a number of physical illnesses that affect women in greater numbers than men that can manifest with psychiatric symptoms. These conditions are often misdiagnosed as psychiatric and the women often deteriorate due to inappropriate treatment. For example, hypothyroid can manifest as depression. If the person is given anti-depressants rather than thyroid hormone, the depression can become worse. In some conditions, psychiatric medications can even be fatal. Some of the conditions discussed by Klonoff and Landrine include MS, lupus, adrenal conditions, temporal lobe epilepsy, and others. The authors think that these misdiagnoses may account for the fact that women are thought to suffer from anxiety and depression in greater numbers than do men. It may be that the counts are biased by including women who actually are suffering from these undiagnosed physical diseases. The book has an excellent table in the appendix that suggests questions for ruling out physical diseases when psychological symptoms are present.
Know that Sensitivity Levels
There will be great differences in the necessary lifestyle modifications between those with mild sensitivities and those whose sensitivities have become severe. Many people without sensitivities are able to understand mild or isolated reactions, but draw a blank when confronted with someone who is virtually unable to tolerate any exposures. Some people with MCS are unable even to be near other individuals who will secondarily expose them to odors that they have picked up on their clothing or hair.
Some Reactions Will Mimic
Chemical and/or electrical sensitivities may create severe stress, anxiety, and depression both as primary reactions to exposures and as secondary reactions to loss and disintegration of previous lifestyle. Critics have used the presence of neurological reactions as grist for suggesting that chemical sensitivity is a psychiatric disorder. However, petrochemical exposures can cause depression (Randolph and Moss 1982), anxiety, and even panic attacks (Dager, Holland, Cowley, et al. 1987). In fact, many people with MCS report having developed phobias after the onset of the chemical sensitivity, but no research has directly addressed this.
We also do not know to what extent children’s school problems such as ADHD, learning disabilities, and behavioral problems are impacted or even caused by chemical or electrical exposures. Children as well as adults may be vulnerable to fluorescent lighting, EMFs from computers, cell phones and towers, and other sources of radiation.
At the same time, any preexisting or unrelated mental health needs should not be ignored. Certainly, other concerns do not disappear just because a person has developed sensitivities. Deciphering when the issue at hand is specifically environmentally triggered can be a shared task with the client, and will require a good working knowledge of exposure-related issues as well as a sensitivity to the dynamics operating for specific clients in specific contexts.
Some clients will need modifications in the office setting. Small modifications might include removing air fresheners, potpourri, perfumes, and other odors from the office, and turning off electrical equipment if the client asks. Some clients will be unable to go to the office at all, even with these modifications (perhaps due to the heating system, pesticides, or perfumes used by other clients). It would be best to see these individuals in their homes. Additionally, with these clients, cancellations are more likely to be the result of erratic energy levels and illness due to unavoidable exposures than to resistance or lack of follow-through. Furthermore, financial difficulties may prevent many people with environmental sensitivities from obtaining therapy unless some flexible monetary arrangements can be made.
Help Your Client Mourn and Come to
Terms with Any Losses
Each client will have endured some losses caused by their health condition. You may want to inquire how your client thinks their life would be different without sensitivities. According to respondents from Phase I of my study, common losses include educational opportunities, professional success, financial stability, relationships, and nurturing possibilities (including motherhood).
Help the Client Plan
In between exposures, clients may require assistance in making plans for themselves as to what they will do once they are aware that they have suffered a debilitating exposure. Because some exposures entail mental confusion as well as physical illness, clients may do well to plan, in advance, what they will do during or immediately after a debilitating exposure. Some of a client’s special needs during such times may include needing to ask for physical assistance, getting away from the offending chemical, taking a particular remedy that mitigates ill effects, taking special care to control irritability brought on by the exposure, etc.
Monitor the Client’s Level of Support
Everyone has varying levels of support and conflict in their relationships with other people. Therefore, clients with sensitivities may need some assistance negotiating their close relationships with other people who invariably will demonstrate various levels of belief in and support for those with these problems. Therapists with training in family counseling may be in unique positions to help in this way, but should guard against conceptualizing the sensitivities as “symptoms of family dysfunction” rather than as valid problems in their own right.
Clients Struggle with the Issue of
Each harmful exposure or long period of debility may mean “down time” or time in which the client is unavailable to others or unable to accomplish much in terms of effortful work. Of course, the inability to work will be a problem for those who are employed, and may lead to friction with co-workers and bosses, as well as to financial problems. The inability to be available to others is likely to take a toll on both intimate and casual relationships. For example, Barshay (1993) has written of her experience with chronic fatigue and MCS. She says, “I do not have the energy to make new friends or even to keep up with women I already know; for an extra telephone call in my day will often bring on an exacerbation of symptoms.” Even when the client is feeling good, conditions such as MS, MCS, and other illnesses with a variable course, create the unpredictability of not knowing how one will feel on a particular day. This makes it very difficult for anyone to make social plans. In addition, when in long periods of illness, if friendships are not nurtured, the person with MCS may come out of the experience looking forward to seeing friends again only to discover that they are unavailable. People who have gone on with their lives in the client’s absence may not understand the prolonged hiatus, and may have trouble resuming the previous level of intimacy.
Help Clients Validate Their Own Knowledge
Even clients who are considerably educated about their condition can forget that they are the experts in regard to how chemicals and the illness/ sensitivity process affect them. For some, avoidance may even be a matter of life and death. Yet, people with this condition are in the position of having to be assertive about something that few people understand or respect.
Help the Client Plan for a Future That May
Include Some Level of Disability
Although some people with sensitivities recover to some extent, and a small number report recovering completely, many do not. Considerable fear may be associated with an unknown course of illness. The client may need help making plans to confront work problems, financial difficulties, and perhaps more physical disability. Another aspect of long-term planning includes helping the client let go of earlier goals that are now unattainable. Since chemical sensitivities dictate what environments are feasible, there will be roles that must necessarily be abandoned or never attained.
Resist Pressuring the Client
Although your intentions may be pure, you should resist pressuring a client into trying specific cures or treatments. Esten and Willmott (1993) have written of some therapists’ need to “cure” clients of having a disability: “With all good intentions the therapist tells the client of diets, snake venom treatments, special exercise programs, and vitamin regimes that will rid them of the problem.” This is not to say that there are no helpful interventions. On the contrary, many participants in Phase I of my study reported obtaining help from a variety of treatments. However, it is the client who must make the decision to try yet another type of therapy. These decisions must be viewed in the context of knowing that the client has probably already spent considerable money, time, and energy trying various treatments. One exception to this is simple avoidance. If you have clients who refuse even to try to protect themselves by avoiding continual exposures, then you will not be able to help these clients until they stop denying the problem and decide to deal with it.
Help the Client Come to Terms with
Constant Challenges to Identity
If the condition progresses, each increase in the level of sensitivity poses new challenges for the chemically sensitive person. If new sensitivities develop, further life restrictions may ensue. Clients with MCS and ES are in the position of having their contextual background shrink with increasing limitations until much of what is identified as “self” is no longer available. One respondent dealt with this by actually giving herself a new name, as she felt that her old self was “dead” now that she was forced to live an entirely new and isolated lifestyle. Although this upset family members, for her it represented a tangible way of naming her experience and moving forward. Other clients may struggle with the need to be ever vigilant regarding exposures. Still others may need to mourn the loss of a spontaneous lifestyle. Clients with sensitivities, perhaps much as those with MS, need to confront, integrate, and mourn each new loss or change in themselves if functioning slowly diminishes. Friedman (1993) has discussed the tremendous personal shock of becoming quadriplegic in an instant as a result of a car accident. Conditions like MCS, in contrast, may have the “advantage” of spreading slowly over time, thus giving a therapist the opportunity to offer support as one stable element in the degeneration process.
Support the Client’s Move to the Political Arena
If possible, and if clients wish it, helping them to connect with advocacy organizations may urge them on to a new level of growth. Many people disabled with sensitivities have made serious contributions to public education and legislative advocacy in relation to their disability. For many clients, this will happen naturally as they learn of legislative and educational projects. Others may need to be made aware of the major organizations that have been formed to deal with MCS and ES related issues. Therapists should be familiar with these organizations to provide resources and remain current on political and legal discussions in the area. Many health providers with an interest in the area join a number of these organizations for self-education and to procure resources. (See Appendix D for organizations to join.)
Be Willing to Go to Bat for Your Client
Therapists may be asked by clients to provide them with letters and various communications that will aid in procuring resources. Because cultural biases often dictate that patients with environmental sensitivities will have to see psychiatrists when pursuing worker’s compensation or disability benefits, a letter from a sympathetic mental health professional who knows the client may help dilute damaging information from an industry-based psychiatrist.
Be Willing to Help in Practical Matters
Clients with MCS and ES face the task of searching for safe housing, organic foods, chemical-free furnishings and clothing, etc. Information of this sort may be needed by clients who have just recently recognized their sensitivities, while clients with longer-term experience will be educating the therapist.
Understand the Importance of the Environment
Don’t compartmentalize clients or what you learn while seeing them. For some sensitized people, their condition is their call to education and activism in regard to the environment. This quest often leads to a bottom line understanding that environmental degradation is so pervasive that people’s biological systems are breaking down under the strain. Considerable anger results from the fact that other people do not seem to take this seriously. What follows may be a commitment to activism. Probably the most validation/respect a therapist can show for the client is to become educated about environmental issues and commit to a style of life that has minimal negative impact on others’ health. People with MCS have discussed the irony of going to chemically contaminated offices with perfumed providers in order to “heal.” Therapists who truly understand MCS are necessarily placing themselves on the path of the environmentalist. If you learn from your client that wearing perfume makes chemically sensitive people ill and denies them access to every place you wear it, can you then—in good conscience—go home and put on perfume to wear during your evening out?
Basically, the person with MCS or ES needs to build a new foundation of self that includes the limitations without purging positive unique self-qualities. Since so much of self is relational, this can be extremely difficult in isolation, and part of therapy may be helping the client to brainstorm possibilities for social interaction. (See chapter ten for more information on social support.)