Mobilizing Social Support
Many chronic illnesses have been studied for the effects of social support—or the lack of it—on the patient. Low amounts of social support are directly linked to increased symptoms and higher death rates in the chronically ill, even after finances, health behaviors, physical activity, obesity, and preventive health care utilization have been taken into account. Greater amounts of social support are associated with improved cardiovascular, endocrine, and immune function (Uchino, Cacioppo, and Kiecolt-Glaser 1996) and strongly relate to psychological well-being. Interestingly, the amount of social support that people perceive they have may be more important than the support they actually receive (Barrera 1986). However, it is not known exactly how perceived support exerts this influence on health (Shumaker and Hill 1991; Thoits 1995).
Many studies show that patients with chronic illnesses have a difficult time maintaining social support. This may be due to the fact that pain, functional difficulties, and spending time in bed all limit social contact. Some researchers have explained the reduction in social support for the chronically ill with the “stigma hypothesis” (Peters-Golden 1982); others explain the lack of social support with the “social activity hypothesis” (Bloom and Kessler 1994). The stigma hypothesis holds that the healthy will avoid and stigmatize those with illnesses and disabilities. The social activity hypothesis holds that as illness progresses, people are less able to participate in social interactions.
In support of the stigma hypothesis, Peters-Golden (1982) found that women with breast cancer reported receiving inadequate support, particularly compared to the support that well people expected to receive if they became ill. Furthermore, a substantial number of Peters-Golden’s healthy respondents said that they avoided people with cancer, and that they viewed people who discuss their illness as being maladjusted. Twelve years later, Bloom and Kessler (1994) concluded that the stigma no longer applied to breast cancer, but that people do lose social interaction opportunities as a result of both role change (with the ensuing loss of portions of identity) and reduced ability to participate.
Because of reduced energy, discretionary activities disappear as the ill person struggles with survival issues, such as work. Increased time must be spent resting to compensate for energy used in work or other necessary activities (known as “down time” to those with sensitivities), and the social activities that may provide supportive exchanges cannot occur.
“Most of all I miss the ability to give to others. . . . I want to talk to these people about something other than my problems and my illnesses, but it is very difficult. All of my time and all of my energy seem to be consumed with coping with my circumstances. There is little energy to be involved in other activities that are not related to my health problems and that could be shared with non-MCS people.”
—Forty-one-year-old woman with MCS
In the case of MCS and EMS, both stigma and restraints on social activity seem to operate to limit opportunities for social support. People with sensitivities may be at risk for problematic interactions with others due to both their requests for accessible environments and the poorly understood nature of sensitivities. If healthy people are likely to stigmatize people with physical conditions, such as cancer, they are even more likely to avoid those with a condition that is often seen as psychological. Thus, people with MCS, and particularly electrical sensitivities may be avoided or become the targets of negative attitudes from others. Furthermore, social activity itself is diminished by the need to avoid chemical or electrical exposures, thus reducing the person’s opportunity for social interaction.
Levels and Sources of Social Support
In Phase I of my study, I used the Personal Resource Questionnaire 85 (PRQ85) (Weinert 1987) to ask people with MCS about their level of perceived support, their support needs, and to whom they turn to for meeting these needs. (See Appendix A for more details.) Perceived support is the support someone believes would be forthcoming if needed. Received support is the support that one actually has received.
Gender, health status, and fatigue strongly influenced people’s perceived levels of social support. For example, according to respondents in Phase I of my study, women perceived higher levels of social support than did men. Also, if a person’s health improved, they perceived higher levels of support than if their health condition worsened. People who were fatigued perceived lower levels of social support. Severity and length of illness did not affect perceived levels of social support.
People with MCS receive support from various sources, including support groups, partner relationships, family members, friends, professionals, spiritual advisors, and neighbors.
A little more than half of the Phase I participants (53 percent of women and 63 percent of men) had some contact with a support group on a weekly (22 percent) or monthly (15 percent) basis. Unfortunately, the barriers to accessing public and private buildings limited many respondents to phone contact with other support group members. Interestingly, I found that having contact with a support group did not affect a person’s perceived level of social support. Those with high levels of contact (monthly or greater) had a tendency to perceive higher support, but the effect was not strong enough to be called “significant.” Similarly, severity of condition was weakly associated with high support group contact.
Other support available to Phase I participants occurred in partner relationships. Sixty-one percent of the participants said that they were in romantic relationships and had higher perceived support than those not in relationships. People who rated their partners as being very supportive perceived higher levels of social support than did those who rated their partners as being less supportive. About half of participants said their partners were very supportive, one-third said somewhat supportive.
Just over three-quarters of those in romantic relationships said that their partners believed “fairly strongly” or “very strongly” that chemicals caused their symptoms. However, some reported that their partners believed “not at all” (3.4 percent), “very little” (2.9 percent), or “somewhat” (16.4 percent) that their illness was caused by chemicals.
Thirty-one percent of participants experienced a romantic breakup since becoming chemically injured. Almost three-quarters of these people believed that their illness contributed to ending their relationships. Only 26 percent said that the illness contributed “not at all” or “very little” to the breakup. This is not so different from what Alison Johnson (1996) found when she asked 243 people with MCS: “Has your condition been a significant factor in a divorce?” Only 15.2 percent said yes, 68.3 percent said no, and 16.5 percent were unsure. Although the rumors are that most people with MCS are “abandoned,” you can see from these two studies, this is not usually the case.
People with MCS find it particularly stressful to be disbelieved when they assert that chemicals make them ill. Consequently, perceived social support scores are positively related to having a supportive partner who believes that chemicals are making the person with MCS ill. Not surprisingly, people who suffer romantic breakups after becoming sensitive to chemicals and who believe that MCS is the cause of the breakup report lower levels of support.
Support from family members is crucial for people with any kind of illness or disability. For people with sensitivities, this support can mean the difference between successful coping and tremendous suffering. Many respondents who felt well-adjusted credited their families with providing the compassion and understanding that allowed them to maintain a high quality of life. Partners, in-laws, and children who accommodated to the person’s needs were literally lifesavers.
Many people with MCS, however, felt painfully isolated from families, especially in instances where family members were asked to be chemical-free. Many Phase II respondents did not receive positive support from their family members. Unsupportive behaviors included:
Ø Refusing to understand the nature of MCS sensitivities
Ø Wearing perfume
Ø Disbelieving that MCS was a true physical illness
Ø Refusing to discuss the chemical sensitivity
Ø Excluding the respondent from family get-togethers
Ø Calling the respondent a malingerer or a hypochondriac
Ø Being verbally abusive
Ø Refusing to visit
Ø Making the respondent the target of humor
Ø Cutting off communications entirely
Ø Deliberately exposing the respondent to chemicals
Although these are some very abusive behaviors on the part of families, more prevalent were testimonies of loving support from spouses, immediate family, and a few close friends:
“I have my own pulma-aid machine that makes breathing easier. Otherwise, [I rely on] the moral support of my husband, family, and friends. They don’t laugh at me and are very understanding. They bathe special for me and visit a lot. We have all adjusted to socializing at our house. We have weekly to bimonthly dinners, [play] card games or watch videos. When you aren’t isolated from life, it really helps.
—Thirty-eight-year old woman with MCS
Loving family support was able to help some people move beyond merely coping with MCS. Some individuals used the support of their family to help them be role models for how best to live with a chronic illness, such as MCS:
“I want to help other persons who have not had the good fortune to have a loving wonderful husband who sticks by you through thick and thin [and] wonderful children who know their mother isn’t crazy. I’ve learned to put people and things in perspective by learning to say ‘That’s their problem if they don’t understand.’”
—Fifty-nine-year-old woman with MCS
Sexuality is a concern for many people with health problems. Nothing has been written about this in medical literature, but many people with MCS reported sexual problems:
“For me the greatest loss is the ability to share affection with my wife. . . . I am impotent and can’t even have relationships with [members of the] opposite sex. Of course, my sense of self is compromised. [I’m] not sure, [but] I may kill myself eventually. I have noticed though, that I am able to express and develop my spirituality since I have been unable to work and socialize.
—Fifty-year-old man with MCS
One woman responded to the question, “Is there any goal or activity you have wanted to pursue but haven’t been able to pursue?” with “A full and rich sex life with my husband, like before I felt so sick.”
In Phase I of my study, respondents answered these questions about sexuality from the Psychosocial Adjustment to Illness Scale (Derogatis 1986). Here are the percentages of people who reported particular sexual problems:
Problems in a general relationship as a result of illness:
No change in our relationship. 30.8%
A little less close since my illness. 15.1%
Definitely less close since my illness. 7.9%
Serious problems or a break in our relationship
since my illness. 19.3%
Did not answer question. 26.9%
Loss of interest in sexual activities as a result of illness:
Absolutely no sexual interest since illness. 8.9%
Marked loss of sexual interest. 35.7%
Slight loss of sexual interest. 22.0%
No loss of sexual interest. 18.7%
Did not answer question. 14.8%
Decrease in the frequency of sexual activities as a result of illness:
No decrease in sexual activities. 10.2%
Slight decrease in sexual activities. 20.0%
Marked decrease in sexual activities .33.4%
Sexual activities have stopped. 19.0%
Did not answer question. 17.4%
Change in the pleasure or satisfaction from sex:
Sexual pleasure and satisfaction have stopped. 10.2%
Marked loss of sexual pleasure or satisfaction. 21.0%
Slight loss of sexual pleasure or satisfaction 23.0%
No change in sexual satisfaction. 24.9%
Did not answer question. 21.0%
Interference in the person’s ability to perform sexual activities even though still interested in sex:
No change in ability to have sex. 33.4%
Slight problems with sexual performance. 28.5%
Constant sexual performance problems. 11.8%
Totally unable to perform sexually. 5.2%
Did not answer question. 21.0%
Interference with sexual relationship causes arguments:
Constant arguments. 3.0%
Frequent arguments. 8.2%
Some arguments. 24.3%
No arguments. 35.7%
Did not answer question. 28.9%
You can see that for some people, sexual and intimate relationships were affected, but the experience was by no means universal. Sexual functioning is difficult when you are feeling unwell and when stressors have mounted. In addition, we know very little about any endocrine factors involved in sexual functioning for those with MCS because the area has not been studied.
Chemically sensitive people without spouses sometimes attempt dating, but obstacles frequently prevent an intimate relationship from getting off the ground. Some people refuse offers because they feel it is unfair to the potential dating partner to even attempt a relationship. Others tried and failed because there was so little they could do together.
“I would like to be in an intimate relationship. I recently started dating, but it is very difficult because of my reactions when I’m out. I want to so much, but don’t also have the energy. Most people want to date healthy people.
—Thirty-eight-year-old woman with MCS
It is true that MCS is not exactly conducive to personal ads. Consider this imaginary ad. Who do you think would respond to it?
Woman with chronic illness who cannot go to restaurants, theaters, movies, parties, or any public building that has been sprayed for insects or where others are wearing fragrance is seeking potential dating partner who does not smell for chemical-free outings and to share boring food. Sex for me is a thing of the past, and I’m often in pain. I can’t use makeup or get my hair done, but I’m beautiful on the inside.
Or this one:
Man who cannot work, but with good heart, seeks woman who does not wear fragrances, or dry-cleaned or fabric-softened clothes. Must be content not to go out much in public including restaurants, theater, or parties. I’m on social security. House attractively lined with aluminum foil to seal out chemicals.
There is also the possibility that you will find a person who doesn’t mind dating someone who is ill, but whose motivations may not be the healthiest:
“[It’s] very hard to attract a ‘healthy mentally’ man to me. Most men who would be interested in me have some kind of mental health problem, i.e., too co-dependent on my being sick so they feel needed!
—Thirty-five-year-old woman with MCS
By now, you’ve got the idea that dating is extremely difficult for those with environmental sensitivities. Surprisingly, however, some people not only dated, but also found meaningful relationships. Some even married in spite of having a disability.
Because parenting is such a consuming responsibility, it can be extremely difficult when you have sensitivities. Environmental sensitivity demands tremendous coping energy and rearranges your life without your consent. For some people, the constraints of the situation prevent them from ever becoming parents.
“The effects of the chemicals on my body left me so exhausted, I was experiencing so much confusion and difficulty making decisions, I couldn’t imagine the complexity of the addition of a child.”
—Woman with MCS for six years
If this were the case in any other illness, there would be many books written about it by now. Motherhood is such a mandate in our culture that large numbers of women deciding not to have children for health reasons should draw a lot of attention. But it doesn’t. Even the feminist journal in which I published my article “Multiple Chemical Sensitivity/Environmental Illness, and Life Disruption” suggested that the part about not having children be cut.
Unfortunately, MCS prevents some who do have children from being all they want to be in those relationships. Parents with MCS may not be able to attend school conferences, sporting events, plays, or other activities that involve their children. In some cases, the difficult symptoms and mood changes further interfere with parenting responsibilities. One woman with MCS said,
“Over twelve years of constant headaches three or four days a week severe enough for vomiting left me a poorer mom than I would like to have been. Also the irritability was (and is) at times a problem. However, my children always knew they were loved, and have good self-images.”
An illness in a family member is a call to responsibility. In environmental sensitivities, the disability usually precedes any knowledge about the condition. That is, you may feel sick before you have any idea what is causing your illness. You may almost feel caught in a time warp and will understandably turn to significant others for self-validation. It is crucial that they are there for you. Goodheart and Lansing (1997) say:
“Patients’ 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” (p. 38).
Family members have a responsibility to one another, and just as you would be expected to support a family member who developed cancer, your loved ones need to support you in this “invisible illness.” In some sense, family members need to hear that “not believing” in MCS or EMS is no excuse. That is, wedding vows do not include the caveat “unless she gets sick.” Relationships that are already strained or of poor quality will be hit the hardest when disabling sensitivities are present, and they are likely to disintegrate under the pressure. If your relationship has an Achilles heel, this disability will find it.
On the other hand, I have never been told by anyone with sensitivities that their previously supportive and kindly spouse suddenly became abusive after they became sensitized. Usually, if a spouse becomes abusive or a relationship becomes unhealthy, there were indications of it before the sensitivities developed. For instance, when I ask what the relationship was like before, I often hear something like, “Well, he did drink.”
At some point you may have to decide that an abusive relationship is not worth it. Although it can be terrifying to go it alone when you are so vulnerable and needing help, some people’s behavior can be more harmful than helpful. One woman, for instance, who has had MCS for five years, says her husband “unjustifiably calls me names, ignores me, orders me to not talk (anytime), [and offers] no affection, no sympathy, no help.”
Dealing with Friends and Children
Many people in my study talked of the difficulty of having their children’s friends be fragrance-free. Some adolescents even stopped inviting people to their homes as they were embarrassed by their parents’ demands. I think this is copping out. The chemical-free atmosphere of the home must be preserved for the safety of the MCS parent, just as wheel-chair ramps are required when a family member is in a wheelchair.
It takes a lot of effort to educate and “clean up” a friend for visiting, but it is worth it. You can make little kits of safe soap, shampoo, and conditioner for friends’ use when they visit. Discourage their use of chemical fabric softeners (there are safer ones now) and mothballs. Perhaps they can keep a change of clothes in a plastic bag to use when they visit you. Once someone is educated, then you can go on to other things, such as having real interactions. People need to be educated and to know that simple things like fabric softener are so impregnated with toxins that they make a large number of people sick.
It is not acceptable for adolescents to give up on parents with MCS any more than it would be to give up on a parent with any other type of physical challenge. You are still the parent in your household, and as such, should hold some authority. Family systems should not become so skewed and out of balance that the parents no longer have their children’s respect.
You may feel that you are an inadequate parent because of your inability to attend your child’s school events and other functions. However, you can still be a parent where it counts. Even if you don’t attend every activity, you can listen, care, advise, and support your children. Parents with disabilities can be respectable, nurturing, and available, and it is up to you and your spouse or partner (if you have one) to arrange life in your family so that this occurs.
There are many things that you can do as a family with some creative planning. Maybe instead of going to a street fair and breathing perfume and propane, you can go on a picnic and eat organic food and take a small walk. With planning and adjusting you can still share some activities. If you can be relieved of some of the activities that make you ill or exhausted, you may have more energy left for more important and meaningful parenting tasks. When grown, your child will not remember every PTA meeting that you missed, but rather the overall picture that is largely composed of the quality of the relationship you provided.
Quality relationships preserve appropriate parental authority. When family therapists look at families in distress, they look at power, boundaries, communication, and roles. All of these are relevant to the family with an environmentally sensitive member. Parents should always have sufficient authority in the family to effect change, and to provide a safe and loving environment for their children. If a parent has become disrespected and disempowered by the family, then that power needs to be restored to that parent. The inability to breathe perfume is not a character flaw and should not set you up to be the family scapegoat. Do not accept this reassignment of authority.
Furthermore, boundaries between people in healthy families should be strong enough so that each person has his or her own identity and room to grow. However, boundaries should not be so rigid that people can’t communicate and share. If the boundaries are too rigid, there is no intimacy. If the boundaries are too permeable, then the family is said to be enmeshed. An enmeshed family blurs the identities of its members and does not allow each person an adequate amount of personal space or privacy. Do you think that your sensitivities have affected the boundaries in your family? For example, children do not belong in the parents’ discussions about experiences of sex or conflict. With an ill parent, this boundary may tend to dissolve while the children are taking care of the parent, or the well spouse or partner comes to rely more on the children. For healthy family functioning, however, the couple’s relationship should be preserved complete with an appropriate parental boundary.
Roles also are an important piece of a family’s identity. Has your health changed the roles in your family? Some practical aspects of the parental role are bound to change when you have limitations, but the cognitive (mental) aspects of the parenting role should be maintained. Who plays what role in the family? Initial therapy sessions with a family reveal so much about how members relate, such as who speaks for whom, who relates to whom, who gets listened to, and many other functions. Ideally, each person in the family is able to communicate directly with every other member without translation by a third member. Each person is listened to, people speak for themselves, and no coalitions form that exclude any family members.
Recognize the Stress Family
Although healthy relationships do not usually suddenly disintegrate due to disabling sensitivities, even healthy and supportive family members might experience extreme stress in response to the losses and demands of the disability. The losses inherent in the condition fall not only on the person with sensitivities, but on their significant others and children as well. Activities, finances, housing, future plans, and customary ways of spending time together are all disrupted. Even small things, such as decorating the home, can be sources of conflict in relationships:
“In my case . . . MCS can contribute a great deal of stress to [the] ‘romantic’ relationship, as you put it, especially if the two people are married or living together. It is a challenge to provide for one’s physical needs as well as balancing the other person’s need for freedom in using the house according to his needs and wishes (to feel it’s his ‘nest’ too). A mattress, a piece of furniture, computer, synthesizer, or a redecorating or repair job may cause major problems. Objecting to what seems like a reasonable, mundane request leads to extra conflicts, extra negotiation unless both people are very mature and ‘evolved.’”
—Fifty-six-year old woman with MCS
The well partner has the pressure of performing the duties that the other can’t, as well as coping with reduced income, communicating with in-laws who may not understand, and having to care for the person with sensitivities during periods of debilitation. To make matters worse, the well partner has to “explain” repeatedly to others why the significant other can’t fill up the car, drive to the mall, help out a neighbor, etc. The well partner’s own interests and activities get put on hold, while trying to make things better for the person with the health issue. But what happens when this task lasts fifteen years? Where is the personal development of the well partner? It seems that some are able to cope and grow in spite of the terrible stresses. In response to the question, “Have you experienced any personal growth as a result of having MCS?” one woman wrote:
“No, but my husband has. He discovered he had the strength to stand by me and support me, even though doctors opposed my opinion of my illness. He would say, ‘I know my wife, and she’s the last person who would want to be sick, or who would fake illness.’ I couldn’t have asked for more constant support, even through some very rough times. We had plenty of ups and downs, but he always came through for me. This in turn has deepened my love for him, and made us a stronger team.”
—Sixty-year-old woman with MCS
But the well partner should not be expected to put all personal aspirations on hold. Altschuler (1997) talks of the need to remain current with the needs of the well family members including adolescents and young children. Although time may feel as if it’s “on hold” for the ill family member, others in the family are progressing through life’s stages and have important needs that must be met. Taking some time to address this specifically instead of allowing all resources to be swallowed by crises would be helpful to all family members, and can be done in therapy or by the family independently. But it needs to be done.
Try Not to Let MCS Cut Off All
Your family probably used to have fun together and engage in outings before sensitivities threatened to limit all of your access to enjoyable leisure activities. There may still be some things that you can do with your significant others that you haven’t tried. You can use the following exercise to create an Anti-Isolation Activity Grid to brainstorm activities to share with both family and friends.
Anti-Isolation Activity Grid
To begin you need an 8.5 x 11 sheet of paper bisected in half with a vertical line. Then do the same with a horizontal line so that you have the paper divided into four quadrants. You will use this paper to make an activity grid. Have the vertical line measure how rewarding an activity is. The higher up on the line, the more rewarding the activity. The horizontal line measures how ill you get from activities with the farthest point on the right being the most ill. Now, write in activities according to how rewarding they are and how sick they make you. Think of potential activities as well as those you already engage in. Those that are fun, but make you very sick, should be in the top-right corner. Those that make you sick and are no fun in the bottom-right corner. The lower left will be for activities that are no fun but which do not make you sick (e.g., washing dishes). The corner you are interested in is the upper left, as the higher up the activity the more rewarding it is. The farther left on the paper, the less sick it makes you. There should be at least some activities listed there that you might be able to pursue. Try hard not to limit yourself to the lower-left quadrant.
Many people tell me that they go only to the health food store and to the doctor. This is sure to be a depressing existence. Is there anything in the upper-left quadrant that you can do that you haven’t tried? Don’t let yourself say that sensitivities have taken everything in the world away from you. When people lose their sight, they gain a recognition and appreciation for other abilities and senses that previously were used in more limited ways. Find out what you still have that is unaffected and develop it. Think of any qualities that you still have that mean something to you and use them to enhance your life. Your activities in the upper-left quadrant should reflect the gifts you still have.
Use the grid to find activities to share with loved ones and friends. Have your significant other do the activity grid with the same two schemas that you used. That is, the vertical axis is how rewarding an activity is to them. The horizontal axis will be how ill an activity makes you, the MCS partner. Then look at the grids together. Those activities that are in the upper-left quadrants of both should be the things you do together. Those in the partner’s upper-right will be those that they do alone. These will be activities that are well liked by your partner, but make you ill. In the lower-right quadrant, place the activities that are not very rewarding to your partner, but which make you ill. Perhaps pumping gas and cutting the grass would go here. These are the activities that the partner may have to do for the household. If the partner truly hates one of these tasks, this may be a perfect chore for which to hire an adolescent neighbor. Some of the activities in the lower-left grids of both people (unenjoyable to both spouses, but don’t make anyone ill) might have to be picked up by you to avoid overwhelming the well partner.
Many people say that they found out who their “real friends” were when they developed MCS. As some old friends fall away, others help and become closer. In addition, people meet new people with MCS who often become close friends and confidants, even if only in phone relationships. You may have to accept that you are not able to have the quantity of relationships and activities that you had before having MCS. But this doesn’t mean that you have to do without all quality relationships. It does mean that maintaining your relationships may be trickier and require some creative work on your part. Some of the following suggestions may help.
Be Clear in Stating Your Needs
It is hard to overestimate the importance of being clear and direct in regard to your needs. One respondent visited her in-laws’ home, arriving only to find windows open with pollution entering from other homes, scented candles burning, and heavily perfumed guests. Now she will not go back to this home. To avoid similar situations, your needs can be spelled out ahead of time by asking lots of questions and making statements about what you can and cannot tolerate: “Will windows be open? Will guests be wearing perfume? I cannot attend if they do. I am also sensitive to scented candles, animals, etc.” You will have to spell out every detail, as people are generally uninformed about their environment. One woman began volunteering at the animal shelter walking dogs, after explaining that she would not be able to walk any dog that had been recently bathed or sprayed for fleas. When she saw a commercial product in the kitchen and asked about its use, she was told that they were using it to kill their weeds, but not to worry because “that’s an herbicide, not a pesticide.”
Similarly, it is best not to wait until a crisis is present to communicate your needs. As this woman found out, in crises, without prior preparation, people naturally expect you to pitch in as they do:
“I was seen as lazy and irresponsible in a family crisis when my mother got sick. Agreed, I hadn’t told my family much about my condition beforehand, but that was because when I broached the subject I got negative responses. (At that time I didn’t know as much about it as well.) If I had it to do over, I would have forged ahead earlier, and not waited for a family crisis to bring it out into the open.”
—Fifty-six-year-old woman with MCS
Everyone has her/his own idea of what a friend is. Having sensitivities may limit your being able to qualify as a friend in someone else’s estimation. One woman, when going through an extremely difficult time following pesticide poisoning, was missing many get-togethers with her work friends. One such friend informed her that if she wasn’t there, those friendships could disappear. There was no understanding on this person’s part that the woman with MCS was virtually unable to go anywhere beyond work. However, this same person also has fragrance-free parties to allow the woman with MCS to attend. It also did not occur to members of this group to visit her at her home or ask if she needed help. Their definition of a friend was someone who came to the get-togethers. Yet these people respected the needs of the others in the group when they had traditional health problems such as minor surgeries, etc. People may have only pockets of awareness regarding MCS, as it is very difficult to conceptualize MCS when you don’t have it. The same person who informed this woman that she could lose her relationships, often thought of her when she was on vacation, thinking, “My friend with MCS couldn’t even safely come here.” That was one of her pieces awareness.
Heroic Efforts May Be Needed
Some respondents reported going to extreme efforts to ensure social interactions. One person described creating a new “family” outside of biological relatives. One woman who had an extremely positive attitude in spite of severe limitations—she had lived in her horse trailer for a year—only felt safe socializing outdoors and so organized trail rides in the mountains. This woman overcame her limitations and maintained a social group through some creative planning. Her life has gradually improved ever since.
There must be something that you can do, even if it is only to walk in the park (beware of pesticides), meet at your home with a book group, walk dogs, or play cards. Finding that something may be difficult, and there may be periods when every outlet seems to disappear. But creative individuals with MCS and EMS have written newsletters, had phone pals, educated the community, and otherwise contributed. Although the job of connecting with other people is made more difficult by being unable to work, it is also true that you have more time. A little of this time can be spent figuring out possibilities for social interactions.
Is there anything in the upper-left quadrant of your activity grid that could include other people if you organized it? Do you have a friend with whom you could walk in the park, plant a garden, start a book club, etc.? (How about planting a woman’s mid-life garden with organic herbs that help with menopause?) Find something that you can do that can be shared and find others who would enjoy it too.
You Have the Right to Be Treated
Even if people don’t understand your condition, this does not give them the right to mistreat you. After all, even if MCS were a psychological ailment (which it is not), you still do not deserve to be abused for having it. Unfortunately, you will receive your share of mistreatment due to ignorance and misunderstanding. No one escapes this.
While reading Jack Berkson’s A Canary’s Tale (1996) about his bout with MCS, I started to think, “Well he is being treated okay so far. Perhaps it is because he is a known and respected ex-state legislator and an attorney. He also is a man and may command more respect from those who have sexist ideas about women.” But then Jack had to go to the hospital and was harassed miserably by an aide wearing aftershave. Even Jack couldn’t escape abuse from ignorant health care workers. (By the way, this is a very serious, yet funny book about one man’s coping with MCS.)
Some friends will support you during bad times. Find them and accept their help. Your worth is not determined by the opinions of abusive others. The more sensitive you are to others’ opinions, the more difficult it will be for you. But, as this woman pointed out, some people will criticize you regardless of what the issue is.
“I haven’t changed. Though what I can do for others has changed. I did go through a period of hurt and [wondered] why when many of my longtime friends dropped me. I have found new friends and people who respect me much more. I have found that having MCS and my struggle for survival has earned me that respect and compassion from others . . . I have also found a small percentage of people who will criticize you, but if it isn’t MCS it would be something else.”
—Sixty-nine-year-old woman with MCS
Try to Be Happy for Those Who
Have “Normal” Lives
It’s hard to listen to accounts of parties, vacations, and other outings and experiences of those who have what we call “normal” lives. Hearing of other people enjoying what you have lost may inspire envy, sadness, longing, depression, or even resentment. You may need to learn how to avoid allowing negative emotions to take over every time someone describes having an enjoyable time out in the world. Your negative responses probably will improve as you find better and meaningful ways of being active. Others may not spend their energies the way you would, and they may not recycle everything they use, but then neither did you before you became sensitized. They haven’t had sensitivity as a teacher, and are doing the best they can. (They might even learn something from you in regard to health and environment in the long haul.) To be a friend to them, however, you must be able to be happy for their ability to enjoy their lives and communicate this to them. Becoming consumed by resentment will only make everything more painful and cause you to feel more isolated.
Determine Who You Can Educate
Just because some people don’t understand MCS doesn’t mean that they couldn’t. You might want to consider who might come around with a well-thought-out explanation. You can make a list with three columns. In one column place those who are already allies. In column two list people who, with some explanation, might come to understand better. Column three is for those who will never get it, no matter what. Scratch them off of your list. What kind of relationship can you have with someone who will not give you even the basic respect of believing you? On the other hand, those in column two might be worth communicating with. If you can’t meet with them in person, you could try writing a letter to them as this woman did:
“At first, I felt terribly misunderstood by my in-laws. I’ve spent some time working on this—looking at my own perceptions, etc. I wrote letters to better inform them of my situation and I feel much better now about the whole thing.
—Twenty-four-year-old woman with MCS
If people don’t come around even with much effort on your part, you will at least have the satisfaction of knowing that you tried. Move them to the third column, scratch them off your list and move on with your life.
“I’m learning to put my health first. If I don’t regain that, I have nothing. I’m less concerned about what others think. If they think I’m crazy, I don’t waste time with them. Convincing some people about chemical allergies is like challenging them about politics. I’ve lost a few ‘friends’ but now know who the real friends are.”
—Sixty-one-year-old woman with MCS
Even if you are unable to reach an understanding with someone in the present, this does not mean that they will not understand at a later point. Even years later is better than never. You may be helpful in initiating a process that eventually raises someone’s awareness to where they truly understand what environmental sensitivity means for those who experience it.
Plug into MCS Support Groups
Others with MCS are often the best sources of information for people newly adjusting to living with sensitivities, and you may want to join a local support group. There is a growing number of local support and advocacy groups for MCS, and joining one will allow you to meet others struggling with similar problems. If you are unaware of groups in your area, you can phone the national Human Ecology Action League (HEAL) in Atlanta to see if there is a HEAL group in your area (see Appendix D for information on organizations).
Take note, there is some etiquette you should observe when approaching others with sensitivities. Remember that these people, like you, are struggling. They have limited time, energy, and resources. Therefore you want to be careful to give and take, appreciate what is given, and be careful not to depend on any one person for too much help. Also, it is important to understand that peoples’ triggers differ and, in sharing support, what is helpful to you may actually make others ill. For example, an air purifier that is helpful to one person may trigger a reaction in someone else.
For Significant Others
This section is for loved ones, partners, and significant others who want to support a partner with environmental sensitivities, but who recognize that it is no easy task. The following suggestions may offer you some help.
Find Out What Your Partner Really Needs
If you can talk frankly with your partner about what she or he really needs and what degree of independence can be retained, you may save yourself some effort and support your partner’s functioning at the same time. For example, one woman’s husband yells, “Handkerchief, handkerchief, really stinky!” at her every time they encounter smells (such as auto exhaust) out in public. This is her cue to breathe through several layers of her cotton handkerchief until the smell passes. His wife feels that it is no longer necessary for him to yell “handkerchief” because (a) she is able to tell for herself when there are noxious fumes, and (b) she holds her breath sometimes instead of whipping out a handkerchief because it is subtler, and (c) she is doing better, and is better able to tolerate mild exposures without becoming ill. It is irritating to have someone yelling “handkerchief” when you are doing fine, are in the middle of an activity (such as a conversation with someone else), and are already handling the problem anyway (by holding your breath). Of course, if she becomes ill from the exhaust, he has to suffer the consequences of her irritability, and this may be part of the motive (besides caring for her) for his unwelcome eruptions.
Because you do have to suffer the effects of any chemical-induced mood changes, or do have to do extra work when your loved one is ill, you probably don’t relish the idea of leaving anything to chance. This is understandable. But there may be some areas in which your partner with sensitivities can assume more responsibility, or where certain interventions are no longer necessary because circumstances have changed.
Be Assertive About Keeping Toxins
Out of the House
In addition to removing any toxins from your home over which you have control, you will have to be assertive with any family members or friends whom you invite to your home. It should go without saying that anyone who is going to “stop by” should be told that they cannot wear fragrances, etc., in your home. Forgetting to convey this information, or feeling discomfort about being clear about this, will cause illness in your partner and jeopardize his or her health. Therefore, if you have customers, clients, friends, family, or other folks coming to your home, it is imperative that they be informed about how to visit without making your loved one ill.
Offer Whatever Assistance You Can
You may have some skills that will help your loved one and yourself cope with a difficult situation. Gathering information is a primary task for the person coping with sensitivities. Can you find articles and resources that will help your loved one find medical care, safe products, and so forth? Legwork is another area in which you can help. Can you grocery shop, gas up the car, or run errands that are too toxic for your family member? If there are children in your family, someone has to communicate with the schools, often in an environment that is intolerable for someone with sensitivities. Can you attend school activities and teacher conferences? If your loved one is limited regarding reading, can you gather important resources and read them, find a reading box, get books on tape, etc.?
Of course, the risk here is that the instrumental tasks can become overwhelming and take up all of your time. Organizational skills may become very important to cope with so many demands when you have limited time and energy. But there may be other people who can help as well. Do you have a friend who could help with shopping? Is someone good with resources? Try to enlist others’ help, as it is good for them to learn about disabilities, and you may be able to return the favors with resources you do have. For example, at some point you will probably know a lot about the pesticides your friends are using around their children, and you may be able to educate them as to the dangers.
Have a Way of Coping When Your
Loved One Has a “Brain Reaction”
Neurotoxic reactions can be frustrating to both people in a relationship, and you will need a way to respond when you know that your partner or loved one is reacting. Unfortunately, saying something like, “You are just reacting now, so I won’t take you seriously” probably won’t cut it. It’s a lot like being told, “You have PMS, so anything you say this week will be disregarded.” But you may be able to ask gently, “You seem extra upset, are you reacting?” People with MCS have to take responsibility for sorting out when they are reacting so as to minimize impacting others with their negativity. However, it is not always easy or even possible to know during the reaction that it has been chemically triggered (or incited by food). And once a negative irritable cycle begins, it is hard to break. So you may need an internal coping strategy of your own in order to get through.
Get Some External Support
It will be a long time before any good research is done on MCS caregivers, seeing that the scientific establishment can’t even agree that MCS exists. The majority of research on caregivers has been done on Alzheimer’s caregivers and has highlighted the tremendous burnout that results from extended care giving. Although MCS is different from Alzheimer’s, (there are some similarities) the stress induced in the caregiver may be the same. You may need some external support from a clergy person, spiritual advisor, friend, counselor, or someone who understands something about sensitivities. Of course, this eliminates 90 percent or more of the population, but some people are teachable.
Recognize Your Own Losses
It is also important to recognize what you have lost as a result of your loved one having MCS. Possible losses for partners include financial security, mobility, social interactions, spare time, hobbies, lifestyles, and many others. Which losses are you mourning? Do you need some outside support for this, such as a counselor or friend? Which losses are no big deals? Are there any that you can do something about? For example, if you have a hobby that uses paints or solvents, do you have a little shed in which to work where the chemicals will not impact your loved one? (Of course, you may have to change your clothes before entering the house to avoid bringing chemical odors inside.)
Don’t Let Go of Your Own Growth
You can’t live completely for another person or give up everything because your partner is limited. If your partner were in a wheelchair, you would not stop walking. In the same vein, you might want to preserve for yourself some activities that your partner cannot do. You may have to shower, change clothes, or invoke other precautions so as not to contaminate your environment when you get home, but you need some outlet for yourself. This will not only support you, but also make you more interesting to others both in and out of the home. I would suggest trying to preserve some community involvement, friendships, and activities for yourself. This will help your loved one as well, for you may be a lifeline to the outside world, and your loved one may enjoy hearing about what you were able to do.
Stay Connected to Others
Staying connected is one of the toughest challenges for those with disabling sensitivities and their families. There may be times when you really are too ill to have contact with people except on the phone (even if they are being supportive). It is important, however, to be vigilant and take advantage of opportunities for interacting with people for whom you care.