Coming to Terms with
Chronic Illness and Disability
Part of coping with environmental sensitivities is coming to terms with having a chronic illness. Chronic means that you may experience ups and downs, and that the condition is long-term. This does not mean that you can’t be helped. It doesn’t even imply that some people won’t get better. But many must accept that sensitivities pose a chronic disability. Some degree of acceptance will relieve you of the desperation felt by those who search frantically for a cure, empty their bank accounts, and perhaps harm themselves in the process.
If you are like many people with sensitivities, you probably became very excited at the first suggestion that something might help you no matter how much it cost. You were willing to try anything, in the belief that in the long run it would be worth it. Perhaps you reasoned that even if you went into debt for your treatment, you would get better and could justify the cost with your newly regained health. The possibility of the treatment not working or even making you worse was not factored into your equation.
Desperation can make you susceptible to every high-cost vitamin or mineral food supplement and newfangled therapy that comes along. With each failed high-cost attempt to get well, you may become more depressed and frustrated, and you may eventually feel that the roller-coaster ride is no longer worth it. One woman with sensitivities has the following advice about seeking a cure:
Ø Stop trying to find a cure.
Ø Accept the illness and do your best to find as many ways as possible to keep yourself comfortable, busy, stress-free, and well nourished with good food.
Ø Find ways to relax and socialize.
Ø Do something to help others with MCS.
Ø Don’t feel sorry for yourself. Everyone has health problems; this is yours.
Ø Make the best of it because you can’t change it; those who pressure themselves to find a cure sometimes just make it worse.
Ø Educate those who want to learn and stop trying to convince those who don’t.
Ø Consider the possibility that if you are to get well, it may not be a high-cost therapy that will help you. And, “never say never” in regard to getting well: I once talked with a woman who had MCS who said she had been greatly helped by a faith healer. (See chapter ten for a discussion on spirituality.)
Sociological Effects of Chronic Illness
A perspective on the sociological effects of chronic illness can help you to stay calm while you choose which treatments to try, begin to understand your difficulties, and realize that you are not alone. Even if you are one of the lucky ones who does not have sensitivities for the long-term, understanding something about the sociological effects of illness in general will help to prepare you for encounters with providers in the medical profession. It also will help you with those people who are influenced by popular conceptions about chronic and poorly understood health conditions.
Rose Galvin (2002) has discussed the historical bent toward blaming any sick people for their illness. She believes that this view is increasing in liberal societies, but in a subtle form. Liberal societies see good citizens as those who are active contributors to society and not “burdensome.” Because sick people typically cannot contribute to the same extent as healthy people, they do not fit this mold of good citizens. This can only contribute to a victim blaming ideology.
The helping professions likewise have not always been kind in their assessments of people with difficult health problems. For example, those with chronic pain frequently are perceived as complainers, or as using pain for “secondary gain;” some psychologists try to prove that women with breast cancer have unhealthy ways of handling anger; and many psychology textbooks still say that asthma is triggered to a great extent by stress and psychological factors.
Attitudes about MCS Patients
Brodsky, Green, and Ograd (1989) describe women who have MCS as having a “decompensative psychological illness that results in a change in intrafamily dynamics.” They are described as feeling relief from not having to deal with the overwhelming demands of home, family, and job, and from having others take care of them. Their burdens have been lifted and they become the burden themselves. This is similar to how providers describe people with other health problems. Consider these statements about a woman with head and back pain cited in the journal Women and Aging:
“At its simplest, the pain was a powerful means for expressing her disaffection with her life situation in general and the marital relationship in particular. At a more complex level, pain served the purpose of correcting what family theorists have described as “hierarchical incongruity.” This concept is predicated on the assumption that while a symptomatic partner in a marriage assumes a dependent position, the symptom also empowers that individual, which in turn corrects the power imbalance in the marriage. In short, pain enables the person in the one below position to gain the upper hand.” (Roy 1994, 80)
In none of the cases cited in the article was the pain described as valid or the experience of the sufferer honored. Chronic pain and MCS may share the characteristics of chronicity and lack of response to standard medical cures. Both syndromes frustrate physicians, and patients themselves come to be seen as problems. In some other conditions as well, the patient bears the brunt of our culture’s difficulty with poorly understood systemic health problems. Goodheart and Lansing (1997) say:
“There are many myths about the causes and cures for unpredictable diseases, such as multiple sclerosis, rheumatoid arthritis, chronic fatigue syndrome, postviral syndrome, and post-Lyme syndrome. These diseases are not readily tolerated in our technological solution-focused society because of the aura of uncertainty that surrounds them. People with ambiguous diseases are often viewed as being depressed or psychosomatic, malingering, or using their symptoms for psychological secondary gain. Of course, any disease or symptom may be used for conscious or unconscious manipulation, but ambiguous diseases present an easier target for hostility or dismissal.” (p. 29)
These authors then tell of a woman who was experiencing weakness, pain, and difficulty walking. Physicians attributed the problems to psychological causes. Believing this assessment, the woman didn’t make accommodations for herself, even when it meant crawling around her house in order to be mobile. She was determined not to “give in” to her pain. Finally, a better-trained physician diagnosed her as having postpolio syndrome. This kind of faulty diagnosis is common in MCS and those who have it struggle to continue living as though they were healthy because their culture requires it. Consider the following words from an MCS patient:
“I was ill equipped to face illness, to accept and abide by these new requirements of my body. Then, as my illness wore on, I struggled against the limitations it imposed, because of an inherent habit of pushing limits and overcoming obstacles to fulfill my responsibilities without complaint.”
Legitimization from a health care provider can go a long way in helping the person to cope and adjust. This is true in any medical condition, but particularly in those that are poorly understood and contested such as MCS or chronic fatigue syndrome. When patients with CFS were asked “what is the most unhelpful or upsetting thing that a medical professional has said or done to you” the most popular response (36%) was failure to legitimize the patient’s experience of illness. Conversely, the most helpful thing that a medical professional had said or done was described by 52% as legitimizing the illness, either through diagnosis or by acknowledging the presence of symptoms (Lehman, Lehman, Hemphill, Mandel, & Cooper 2002).
Families in Denial
Commonly, families withhold “permission” for the person with MCS to have a “nonlegitimate” illness or disability. For example, in Phase II of my research, some people were actually forbidden to talk about their MCS. Respondents described relatives walking out of the room if they discussed their sensitivities. This happens on a more subtle level with cancer and other illnesses, although there is often a show of support in the critical stages. But when a family member is forbidden to talk about his or her health concerns, the situation is abusive and dysfunctional. This situation would not and should not arise if good care were being provided. Goodheart and Lansing (1997) say:
“Ideally, when a person has a chronic physical illness, an assessment of the family should include gathering information about the disease and the ordeal the family will be up against; the point in the family life cycle at which the disease occurs; the family structure; the family history and beliefs about the illness; and the ways in which a family relates to the treatment setting. This assessment should enable the therapist to anticipate problems and enable the individual and the family to adapt effectively to chronic illness. Perhaps someday such a goal will be attainable. In reality, early assessment of the family rarely happens.” (p. 154-155)
The authors are correct that an early assessment rarely happens, especially in this day of managed care. For MCS patients, it almost never happens. But with the education of psychotherapists, it could. The goal of doing early assessments is to support family members as they adjust to living with a loved one with a chronic illness. It is distressing to families to suddenly have members’ roles disrupted by disability, yet compassionate support from professionals could help tremendously.
Because of the culture’s negative attitudes toward the chronically ill and, until recently, the lack of available psychological services, there has been very little published material available on chronic illness. (See Appendix C for further reading.) Strauss (1984) wrote compassionately of illness from a sociological perspective, but the psychological community has been slow to address individual and family issues relating to chronic illness.
Jenny Altschuler (1997), however, in Working with Chronic Illness, recognized the bind inherent in having “illness in a world defined by health.” In reference to “delegitimized” illnesses, she says:
“[A]ll ill people have to integrate at least two descriptions of themselves, that of being a person in their own right and being ill. However, some . . . have to integrate a third description: experiencing themselves as unwell, but not being regarded as legitimately ill. This [third description] profoundly affects how they are treated by both family members and professionals.” (p. 4)
Altschuler’s work applies to all people with health problems. Understanding how family members are affected when one member is ill can contextualize some of the trauma of MCS as part of a dynamic process that occurs with all serious health problems. Although the specific demands of each condition differ, people with MCS are not alone in facing delegitimization, loss, and extreme hardship due to illness.
It is informative to have friendships with people who have other chronic illnesses. Although their illnesses may be more socially acceptable than MCS, and they may receive better health care, they still suffer the same difficulties with maintaining an income, having enough energy to complete tasks, paying medical expenses, and trying new treatments that don’t work. For example, my friend with Parkinson’s disease can dine in restaurants, but if his medications fail, his body may freeze and he will have to be carried out by others. (I once helped to drag him out of a bookstore under the gaze of numerous staring patrons.) Similarly, my friend with Crohn’s disease doesn’t have to cope with avoiding all petrochemicals, pesticides, and fragrances—as do people with MCS—but no one would envy the periodic emergency trips she must take to the hospital for yet another bowel resection. My point is that although there are many unique aspects of MCS, people who suffer from it have much in common with people who have other injuries, disabilities, and illnesses. This knowledge may help you to “normalize” some of your suffering.
Goodheart and Lansing (1997) offer a multi-faceted model for understanding people’s various responses to chronic illness. The authors cite two writers, Holland and Rowland, who name “five Ds” that create problems in adapting to chronic illness. All can occur at any stage in adapting to an illness and all express the concerns of people with MCS. The “five Ds” include:
Ø Distance in intimate relationships
Ø Dependency issues
Ø Disability and the obstacles it poses to achievement
Ø the fear and anxiety regarding Death
Goodheart and Lansing believe developing and adjusting to a chronic illness entails first a disorganization and then a reorganization of self, which includes accepting the illness and its limitations, lifestyle changes, and more. The authors describe a six-stage process:
1. In the first stage, “Initial Response,” there is a recognition that something is wrong. Symptoms at this point may be explained away or ignored until it becomes apparent that the problem is persistent.
2. During the second stage, “Awareness of Chronicity,” the person may become anxious or fearful or enter denial. Once the message sinks in that the problem is chronic, more anxiety and a grief reaction are likely to occur. Many conditions wax and wane for a long time before diagnosis is possible. So, the second stage can be a time of ambiguity and seemingly endless waiting when clear answers are not forthcoming.
3. The third stage is “Disorganization.” Goodheart and Lansing describe this stage as the beginning of the disorganization process; the person may experience disturbances in work, education, family roles, and general quality of life. Anger is a natural result of the frustration at this stage and social isolation begins:
“The patient’s negative internal messages go hand in hand with the messages from the outside world. The responses of other people have an extraordinary impact at this vulnerable psychological crossroads in their inner life experience. Patients’ losses are growing. They face the internal loss of a familiar sense of self, function, and identity, and they may be faced with the external loss of support or contact with important other people at work, in the social milieu, or even among family members. “ (page 38).
Although some give up, most continue to try to retain some stable sense of self:
“Most people struggle courageously to reorganize themselves internally, without conscious awareness of the process or assistance that would help them to navigate the disorganizing transition period.” (p. 38)
4. In Goodheart and Lansing’s fourth stage, the “Intensified Wish for a Cure,” the patient expands the search for help through conventional and alternative avenues, religious quests, and other means. The desire is for a return to “normal,” to extrude the illness once and for all. Self-blame may enter the picture as the search for the cause of the illness continues. Magical thinking in a variety of forms may result when the wish for a cure goes unsatisfied:
“[Patients] may believe that the illness is a punishment for misdeeds or poor habits or may imagine that the problem lies in not trying hard enough because of laziness or lack of moral fiber, grit, and determination. At the other extreme, patients may blame themselves for working too hard, having Type A personalities, or overdoing exercise. A tendency to minimize one’s role in illness or to maximize it to the point of believing one can control the illness may be incorporated into the individual’s magical thinking process.” (p. 39)
5. At some point, the person recognizes that the illness cannot be undone or erased and enters the fifth stage, “The Acknowledgement of Helplessness.” Here, they are now free to mourn/grieve for what will never be the same. Simultaneously, the adaptation process can now truly begin as people turn their energy toward finding strategies and coping mechanisms for dealing with the illness. In this stage, they also begin the process of restructuring their life around the illness-imposed limitations.
“Patients respond differently to disease, disorganization, and helplessness, depending on their capacity for creative adaptation in their lives, the severity of the illness, and the support available in their environment. They are challenged to find coping strategies as the disease process changes and as they are changed by it. Coping strategies are successful only to the extent that they are congruent with patients’ normative personality style and level of functioning” (p. 40-41).
The point about coping strategies being congruent with your personality and functioning level is very important. Everyone has to cope in her or his own way. One woman I know with mild/moderate MCS has a very highly visible and responsible profession. Because she is assertive and not afraid of others’ opinions, she is able to persuade psychologists, attorneys, judges, and many others not to wear perfume in her presence. She warns them to leave their scents and scented clothing home, so that if she becomes irritable it can be for a good reason! Not everyone is this comfortable with asking for cooperation, but this is a woman who actually thinks it’s funny when other people publicly criticize her. Would that we could all be so effective and confident!
6. Goodheart and Lansing sum up stage six, “Adaptation to Illness,” as the time when people reorganize around the illness:
“Despite serious obstacles, many patients are able to develop a restructuring of their lives and internal sense of stability. They are able to reorganize in a healthy way. A few are so brittle they do not adapt; instead, they collapse psychologically. Some have an encapsulated neurotic adaptation with a limited range of possibilities; they become subsumed into the patient role or are viewed as society’s discards or cranks. Some are transformed, like the phoenix rising from the ashes, and show significant gains as they reorganize their lives.” (p. 41) [emphasis mine]
The challenge is to become this phoenix and there are plenty of phoenixes in the MCS community. There is a strength that comes from acceptance, meaningful work, and taking personal responsibility for your life. This strength is evident in these people who are role models for others with poorly understood illnesses and disabilities. It is a process—sometimes a long and painful one—but once people accept that they may not fully recover; they are free to explore what that means. When you understand that our society has not done a good job of dealing with any chronic illness, let alone MCS, it helps you to realize how strong you are to have coped as well as you already have. Sometimes you just have to stay in survival mode and not feel guilty about it. One woman understood this when she had the following encounter with a mental health provider:
“He wanted me to function from more of my creative side instead of from my desperate survival mode. I thought that would be nice, but I didn’t think talking to him was going to solve my pressing medical problems. I guess he didn’t realize how much creativity it takes to survive with this illness either. Or how much courage, stamina, and planning it took to go see him, just in case he might be able to help me. He was nice but he didn’t have a clue!”
Acceptance also challenges you to decide on what level you want to approach your chronic illness. The woman I met who had been helped by a faith healer had approached her illness on an energy level. This does not mean that she believes that MCS is a psychological problem, as she doesn’t. But working on a level beyond the physical, for her, offered a way to intervene in a physical problem that appeared to be intractable.
I believe we are never truly stuck. There was a door into the predicament and, although it may seem to have disappeared, there will be another door through. The paradoxical position of accepting and coping with the fact that your illness may be chronic, while being open to healing from a number of sources (that will do you more good than harm), may be the healthiest approach to living and still thriving with environmental sensitivities.