Saturday, February 24, 2007

Steep Learning Curve

Realizing that one has Multiple Chemical Sensitivity (MCS), the learning curve is steep for both the individual, family, and friends. Not being a universally accepted diagnosis, it is difficult at first to find medical providers willing and able to assist in symptom management and diagnosis. Once that step is successful, next comes self-education, wading through reams of information, some derogatory, some on the fringe, but most thoughtful and informative. Armed with information, one then exits stage left into the real world, ready to protect one's self and educate others.

First, there's friends, those people in one's daily life, with whom one laughs, cries, recreates, and interacts. There are dinner parties, gatherings, outings, and simple spontaneous get-togethers. Asking those individuals to change their lifestyles to accomodate your sensitivities can certainly be a challenge on both sides of the conversation, and errors and miscalculations are unavoidable. Only the best friendships survive.

Next is family---whether nuclear or extended---and the extent to which one's family is involved in one's life dictates how far one has to go vis-a-vis explanations, exhortations, and requests for accomodation. Relationships can be strained, visits curtailed, and the chemically sensitive person left choosing between debilitating exposure and avoidance of family altogether. One would hope that family will believe and support the individual claiming to have MCS, but we know of circumstances where some people are marginalized or even ridiculed by their families. Having to recover from family visits can be even more taxing than usual when chemical exposure only exacerbates the almost inevitable stressors.

In terms of romantic relationships, marriages have ended---and others formed out of solidarity---but many relationships can still flourish, whether only one or both of the couple in question are equally effected by the illness.

Work can be the greatest challenge, and many sufferers with MCS eventually succumb to home businesses and financial strain---or ruin---in order to avoid the multiple chronic exposures to toxins at work. Perfumes, cleaning products---even printer inks from faxes and photocopiers---can elucidate reactions, cloud mentation, and decrease both productivity and enjoyment at work. The choice can be a difficult one, as can remaining in a situation which compromises one's health and well-being.

As for public life, that can be the most isolating choice one can make. Depending on the severity of symptoms, hotels, restaurants, bars, movie theaters, stores, cars, concert halls and the streets themselves can all be threats to well-being. How does one negotiate a world which feels so environmentally unfriendly and unsafe? Wearing a carbon mask can feel isolating, but can also allow the individual to be out in public. Oxygen can also help, but then one can certainly feel "medicalized". It's a difficult and slippery slope.

The answers are many, and the discussion is ongoing. Treatment and support from providers, friends, and family do a great deal to lessen the impact on one's life. The network of people and organizations fighting for recognition of MCS as a legitimate diagnosis affords one a feeling of lessened isolation and marginalization.

Those of us who experience environmental sensitivities live on a fringe where most people would refuse to even visit. For us, this fringe is where we need to be, until society and the medical establishment agree that we no longer need to suffer separately, in a world where we feel unsafe. Most of us feel that the world has a long way to go to catch up to what we already know, understand, and experience. It can be an isolating place, but it's our place, and when a great many people are isolated together, it is then not so lonely after all. No person is an island, but any one person can create his or her own island of sanity and health. I invite you to visit my island (fragrance-free, of course!).
Post a Comment