The Language of Illness
By Anne Fulton, M.Ed.
UPdate Spring 1996

     There is a language which comes with illness, and each particular illness has its own accent, and its own vocabulary.  The words and phrases I often hear in association with environmental illness, the particular illness which has visited my life, are ones such as brain fog, disorientation, supplements, reaction, sensitivity, detoxification, homeopathy, antigens and scent free.  Although these words and phrases are specific to the experience of environmental illness, they do not describe the human experience of illness, of what it is like to live in the mind and heart of someone who is ill.  The language seldom talks of the difficulties of being ill; the frustration, the loneliness, the powerlessness, the isolation, the pain.  Nor does the language speak often of how we can gain new insights and learn from illness.  Illness can be harsh, and for some it can be absolutely heartless.  But for others, it can be a wake up call, an invitation to live.  This has been my experience, and these are some of the things a new language is teaching me.

     When I was initially in the acute stage of my illness, one of the first things I began to notice was a change in how people treated me.  Some treated me differently, and their interest waned.  There were those who said it was all in my head.  The implication here was that I was simply making it up, or if I ignored the scent, it would not bother me.  Then there were those who believed that EI was a manifestation of some deep seated emotional issue not dealt with.  No though was given to the increasingly toxic atmosphere we all live in.  Having a chronic illness can be enough to deal with.  The added stress of people doubting the validity of one’s illness can be hurtful, insulting, and can be downright demoralizing.  Fortunately, there is another side to this coin, the that I found people in my life who did not question my illness, did not constantly try to fix me, and supported me in ways that were healthy for me.  I learned that: there are some very special people in my life, and I learned gratitude for this.

     Initially, I was very upset, and at times felt very defeated and set upon, as I began to realize that there were may buildings I could not stay in, and many events I could no longer attend.  As time passed and I began to accept my limitations, I realized that the places I could not go to, or at the very best would experience immense discomfort in, such as smoking events or sealed buildings with toxic carpeting, were places that were not good for me anyhow.  Although I fought the change initially, I now see that I have an early warning system which keeps me out of places which, could I tolerate them for extended periods of time, could conceivably lead me into more serious illness, as has happened to others.

     The aloneness and isolation I experienced in the acute stage of my illness when there were an extremely limited number of environments I was safe in, left me feeling limited, angry and hopeless.  On the other hand, this time forced me to go within myself, get to know who was really at home, make peace with some old ghosts, and to finally feel contented and at home in this skin of mine.
     In the past fifty years, our society has removed birth, death, illness and disability from the common experience.  Although there is now some movement in the other direction, essentially many of these crucial passages still happen in hospitals and, in isolation.  The cult of the individual is isolating enough, but at times of bodily and emotional frailty, we are taken out of community, what little any of us may have in this culture.  But I began to realize, in a interesting and peculiarly aggravating sort of way, that the notion of the individual, the boundaries where one person ends and the next begins is blurred with the experience of EI, in one respect in particular.  This is very apparent around the issue of scents.  If we choose to wear an especially virulent brand of cologne or perfume, this does not stop where our bodies end.  It invades the bodies of people around us, and can cause some pretty serious, even life-threatening reactions.  What each of us do, what each of us wear, affects others.  Ignore it as we may, we are not a collection of separate individuals.  We are a community.
     EI brings with it a lot of grieving.  There is saying good-bye to friends… including those with no patience for illness and those unwilling to make accommodation in regard to even the most blatant of scents.  There can be saying good-bye to old haunts, to foods, to a lifestyle, to employment, to a healthy body.  Conversely, a lot of time is spent rebuilding a life within new parameters, and with many new constraints.  The emotional readjustment is as difficult as all the nutritional, dietary and environmental changes one must go through.  And exhausting.  I found that for a long time, I had nothing to give.  I retreated and withdrew, in order to survive, to regroup, to heal, and to relearn who I was.  When I finally poked my nose back into the ‘real world’, I found that I was speaking a different language, and felt misunderstood.  This retreat, this time of going within, had profoundly changed me.  My values had changed, and the world was a foreign place. 
     I found that I shared a common language with other people who have experienced illness or disability.  Although the accent may be different, we spoke the same tongue.  I found a shared empathy and understanding which those who did not have the experience of illness or disability could not share.  The act of reaching beyond our bodily fate, and finding a common language be that shared experience or spirituality, brings us out of isolation and into community.  Some people, however, do not have the energy or the capability to reach out, and for them, merely existing is an act of the greatest of concern.
     As I had to consciously, for the first time in my life choose organic food that was good for me, cook it in a healthy way, and then make this food a vital part of my body.  I began to realize that I was giving to my body… but so too were the plants and animals I ate, and the earth which nurtured them.  Later, when I was able to grow a little garden, car for and harvest the plants, and experience them becoming part of my body, I began to see how profound and interwoven is my relationship with all of creation.  We are not separate.
     I see that I am a microcosm of the earth.  Whatever happens to the earth, happens to me.  And it did.  My illness just a microcosm of what is happening to the earth.  As we treat the earth, so we treat ourselves.  And if we treat ourselves and our bodies and each other with disrespect, so too we treat the earth.  Because of this, I believe we are ultimately responsible for our actions.  This is what I have learned.  This is my new language.
     When I was a little girl, I once knew this language of respect for the earth, I seemed to be born with some of it, but I was also greatly influenced by my father, mother and grandfather.  When I grew up, I lost it.  We can often lose our mother tongue.  It has been brought back to me largely because of my dance with environmental illness. But more has happened than language acquisition.  I have been given back the gift of joy and wonder.  I can look at the sky and the ocean, and even a little leaf, and be completely blown away, again and again.  I find the miracle of creation staggering and awesome, beyond description, beyond comprehension.  I find family and friends such treasures.  The plants and animals and people in my life are my community and are profoundly precious.  I now see myself as a part of the community of creation, and an out of isolation.  As I try to heal, and try to live on this earth in a respectful manner, I know that so too will I heal a small part of the earth.  If we begin to listen to the language of the earth, we may not lose our illnesses or our disabilities, but we will begin to heal and become whole in a totally different way.  By coming into community with the earth in this way, we can heal a small part of the earth, and a part of ourselves.