Notes from Mokihana
MCS Multiple Chemical Sensitivities is an illness that has changed my life. MCS has changed the lives of thousands, perhaps hundreds of thousands of people on The Planet. Some of us know that we have been affected by exposure to chemicals, toxics and toxins and the work of readjustments to a world and society with values that need to be chucked, recycled or amended begins/continues; and there are many more of us who remain unaware or unwilling to accept the reality of a very 'preventable' illness. This first Canary Caravan Carnival is a celebration and a documentary on the reality of life with limits and structure incited by MCS. The motivation for me to organize such a hopeful and unstructured event comes from two places: first, MAY is MCS Awareness Month throughout the Earth; second, my personal passion for teaching where I find myself remains intact despite the odds. Readers here at VardoForTwo have read and seen the stories that make up the truth of life for Pete (my dear man), JOTS (our dear kitty bump) and me.
More than two years ago, when all hope dried up for me, I was guided to begin a relationship via the cellphone with a person who has been angel, guide, sister-in-recovery and skilled therapist. Wherever and whatever I was experiencing or being challenged with I was supported by the thoughtful, compassionate skill of a woman who has worked the walk and could talk me through many rough spots. Kay McCarty offers hope, humor and tools for times that have tested my inventory of self-worth and self-esteem. That test is common for those who live with MCS. The article that follows is an article that succinctly and compassionately describes the work of self-care that is so vital as one refashioned a value system that supports life with MCS. I am grateful and appreciate of this guidance, and offer this unedited version of "The Impact of MCS on Self-Esteem" as the opening 'act' on VardoForTwo's First Canarary Caravan Carnival.
Mahalo nui loa, Kay
Mokihana and Pete
An edited version of this article appears in CIIN's "Our Toxic Times" April, 2010 edition.
The Impact of MCS on Self-Esteem
By Kay McCarty, MA, LCSW
Recovering EI/MCS Psychotherapist
I write this article based on my many years as a multiple chemical sensitivity (MCS) patient and my years as a counselor and psychotherapist to others who share this affliction. Based on this experience I have observed that the depletion of self-esteem is so prevalent among MCS patients that it begs to be addressed. First we'll look at how healthy self-esteem is developed. Then we'll look at the ways MCS intrudes on self-esteem. Finally we'll discuss ideas for improving self-esteem in spite of illness related obstacles.
Some parents are able to offer their developing infants and children opportunities to develop a strong sense of self-valuing. Such caregivers are able to encourage a sense of security and safety within the family by recognizing who the developing child is as a distinct individual in spite of the fact that the child may not be becoming the individual they may have wished for. The dependable and validating parent is also able to recognize, support and encourage the actual strengths of the child. The families who are able to do so then help him/her to learn to cope with disappointment and to offer comfort when needed. These conditions are some of the family strengths which help a young person develop a strong and enduring sense of self-esteem.
Sound like an ideal family? It is. Most families have to cope with their own emotional issues in the ever more complex world in which we live. The stresses on families intensify as the parents work to provide for their children. External and internal stresses can limit a family's ability to nurture in the ideal way described above. When a child grows up in a less than ideal family (as most of us do) he/she may grow up with a lack of self-esteem. This person often turns to the external world to provide the support and encouragement necessary to augment low self-esteem. A satisfying work experience can also support self-esteem as can nurturing friendships. These are common coping strategies which can be effective while the support system stays intact and when the emotional demands placed on the person do not become overwhelming.
However, when MCS strikes (especially in its more severe forms) the patient's entire world is turned upside down. Relationships (previously a safe haven for us) are often the first casualty. Even though the reality of MCS has become better known over the years, there is still a dearth of understanding of both the illness and its consequences. Many, if not most, do not believe that a fragrance from a shampoo, deodorant, fabric softener or soap can cause a serious, even dangerous, reaction to a person suffering with the illness. The fact that even seizures can be caused by chemical exposures may come as a shock.
Some people are unable to believe in this reality and often respond by blaming the patient. They may suggest, directly or indirectly, that the MCS patient is crazy. Those of us who suffer from the blaming know how excruciatingly painful it is. Often we cannot continue a relationship with people who deny our most basic reality. Just talking with them can become too burdensome. Thus relationships (a basic source of external self-esteem) collapse leaving us most bereft when we are trying to cope with this horrendous illness. One thinks of friends and family rallying around us in a time of serious illness. Instead of this we are frequently abandoned, a serious assault on self- esteem.
We need to become aware that our self-esteem is threatened by the very fact of our being ill. Our society values healthy people who are able to go out into the world and succeed in material ways. I remember a conversation with a good friend who was describing her fashionable new clothes. She was definitely not trying to hurt me. However, at the time I was struggling to find anything safe to wear, which was quite difficult. I had trouble relating to her fashion concerns. I had to give up almost every piece of clothing I had because I could no longer tolerate it. Being reduced to wearing anything safe wounded already tender feelings of self-regard.
Many of us also have to face a medical profession largely unsympathetic to our plight. Health care providers who are unable to understand the reality of our illness (and are often unwilling to become educated) provide one more assault on our self-esteem. In being unable or unwilling to validate our reality, they deny us the "right" to our illness. They can be blamers who communicate that there is something mentally wrong with us. Going through this terrible crisis, it is "normal" for us to question our own sanity, so we are vulnerable to believing them even though we know that there is something physically wrong with us.
Fortunately, more medical professionals are becoming aware of the reality of this illness though sometimes we have to be the ones to teach them about it. Over the past several years , I have seen that progress in public awareness of the reality of this illness is improving, but just not widely or fast enough.
Many of us MCS patients become aware that our home (our emotionally safe place) has become toxic for us. When we most need a safe place to which we can retreat, we are forced out of our space and begin the terrifying journey to try to find a location that we can tolerate. Losing our physical safety, we find that our sense of self and of self-worth is once again challenged.
Thus when we are most sick, we are often least supported. Our self- esteem can be depleted to the point where is it almost non-existent. Frequently we are forced into a survival mode in which all our attention must go to finding physical safety. During that time, emotional issues and needs take a back seat to our basic survival needs.
Once we are able to achieve some, perhaps quite limited, level of physical accommodation to the illness, the work of beginning our emotional healing confronts us. Grief issues must be addressed (see "Creative Coping with the Emotional Stress of Chemical Sensitivities" The Human Ecologist Winter 2009). Our emotional pain may feel unbearable and we need to address not only the grief issues, but also our loss of self-esteem. Restoring it is complicated. However, there are a few basic guidelines.
First, we must search out individuals who can validate our reality.
The need for validation is basic and often MCS deprives us of that. One good way to begin is to try to establish relationships with people who are also suffering with the illness. We may have to make several attempts to find the MCS friends we need. Not everyone fits with everyone else. Sometimes websites can offer us valuable connections. I know making MCS friends has provided me with profound levels of emotional healing. Also, we can ask anyone in our family and/or social system to learn out how to validate who we are as a person. Sometimes we can't wait for others; we need to learn to self validate. And most of all, we need to remind ourselves that we are not MCS; we have MCS.
There are potentially powerful obstacles to the efforts of MCS patients to validate themselves. Typically we absorb the values of the broader society and our American culture values material success, external achievements, social status and good health. Our physical limitations are such that we may have only limited success in these areas.
Secondly, we need to adjust our value system.
This is hard work. Cultural values are deeply ingrained in us; they do not alter easily. An important step in adjusting our perceptions is recognizing which cultural values are particularly strong for each of us. Then we can begin to confront the values which have become less useful to us. In my pre MCS life, I tended to focus on my job and colleges were of incredible importance in my life. I had places to go; people to see. But since the onset of MCS, the focus of my life is on my inner life. How can I be and grow in the world without most of the trappings so valued by American culture. Now that I focus less on external expectations , I have more time and space available to develop internal values, such as compassion.
Third , we can teach ourselves that we don't have to recover to become a valuable person.
One strategy I have used was to explore and discover my strengths. This is not always easy to do. Be willing to ask for help from trusted friends or family. Even the step of identifying one's own strengths can be healing. After I wrote a list of my strengths, I made a copy of them which I keep on my desk at all times. I do everything I can to value myself for who I am and I focus on my strengths. I try to appreciate myself for how I live with my illness and how I work toward higher levels of healing. In so doing, I try to focus on internal development rather than external successes.
Fourth, as upset as we are about the suffering caused by this illness, we can create meaning out of what appears to be meaningless suffering by becoming deeper persons.
The emotional disruption precipitated by MCS can teach us empathy for others who suffer; we can move toward the development of self-compassion. We may search for world views that respect internal development. For example, Buddhism supports the notion that painful human experiences can offer an opportunity for emotional and spiritual growth. Other traditions have a similar focus. Find the focus one that fits you. Many of us are no longer able to attend church services that once comforted us. We may seek spirituality even when we are confined to our safe places.
Fifth, meditation has been used for millennia as a way for people to quiet themselves and to search for serenity.
There's much information out there about different forms of meditation. Guided imagery is a form of mediation. There are many different CDs both for traditional meditation and for guided imagery. Meditation can sometimes offer us a glimpse of a level of consciousness where we are not "less than." At the minimum, it can offer us an opportunity to leave our current pain even if only for a brief time. I have been lucky to find a yoga instructor who can guide me in regarding spiritual matters. I asked a yoga instructor teaching in a nearby facility if she would be willing to come to my house. She was and she charges a minimal fee. We need to take the risk of asking for what we need. In getting what we need we will find comfort and be able to minimize some of our stress.
In summary, my hope is that if we look realistically at the obstacles we endure with this illness, that in and of itself may offer us some of the self-valuing that we so desperately need. Remember, we are good people and bad things have happened to us. We can seek to avoid bitterness and strive to find meaning in our suffering. This is not easy, it is possible. I wish you well on your healing journey.
Kay McCarty, L.C.S.W., M.A., has MCS and is a practicing psycho-therapist with 15 years of experience counseling. She can be contacted at firstname.lastname@example.org or at (847) 244-4187