Coping with MCS as a Chronic Illness
by Pamela Reed Gibson, Ph.D.
People debate whether MCS is an illness, a disability, or an injury. I believe it's all three. The goal of living with chronic illness is to refashion life to accommodate, yet not be defined or overwhelmed by, the illness. In any state of ill-health, there are challenges with work, finances, relationships, health care, identity, and access. But for those with MCS, these challenges are magnified in almost, if not all, of these arenas. Research shows that active coping skill models are healthier than passive or avoidant ones, so having a plan for how to address your MCS challenges is recommended if you are to manage your condition rather than have it manage you.
Although step models can seem oversimplifying, they can also be successful strategies if viewed and used realistically. So I offer a basic strategy for facing MCS, making the hard decisions, and taking control of your life despite a disabling condition.
STEP 1: MAKE A CLEAN LIVING SPACE
Over 95% of those with sensitivities can be helped simply by avoiding chemicals. It's crucial to leave an unsafe home if problems cannot be rectified, as your sensitivities will spread if you are continually exposed to your triggers. At minimum, remove harmful petrochemicals, molds, chemical cleaners, pesticides, furniture that off-gases, and chemical-laden personal care products. Find safe sources of these items, including bedding and clothing, which are now easier to obtain and often work better than conventional products. An air cleaner may be necessary; however, they are designed for cleaning small, unpreventable exposures, rather than larger-scale problems.
STEP 2: MODIFY THE WORK ENVIRONMENT
If you are still working, you will want to negotiate for accommodations that preserve your health and allow you to continue employment. Many modifications are not difficult and can be requested under section 504 of the Educational Act and the Americans with Disabilities Act. Safer cleaners, air fresheners, and pest control; location near an open window; and a fragrance-free policy are not expensive nor difficult for the workplace to provide. Other options include working "off " hours, partially from home, and/or moving your office. If your workplace is resistant, you may have to decide between taking legal action and finding alternative employment.
STEP 3: ASSESS YOUR FINANCES
You will have to regroup and create a financial plan to accommodate a condition that may limit your earning potential. If you are capable of working, you have more flexibility, but do consider that this option may decline in the future. If you cannot work and need money, think about applying for Social Security disability compensation—in itself, a challenging task. We studied 100 persons with MCS who applied for disability and found on average it took 23 months to obtain and generally yielded insufficient awards. Chapter 13 of my book details instructions and resources for applying for disability in a competitive and cynical system.
STEP 4: ACCESS APPROPRIATE NUTRITION AND MEDICAL CARE
Your finances will partially determine the medical options for you. Taking responsibility at the onset of your condition will save you the time, money, and the heartache of seeing numerous disinterested physicians. I suggest considerable selfeducation before you choose a provider. Read both lay and professional writings about sensitivities, listen to what others with MCS say, and then decide where and how you want to get help. View some of the experiences of 917 people who tried numerous treatments for MCS in our 2003 study available at ehponline.org.
You can improve your condition considerably just by modifying your diet. Test your nutrient levels to determine any deficiencies. In addition to treating MCS, you may need to address other medical conditions that may or may not be related to the MCS. There are many layperson medical books that can help with conditions from chronic pain to diabetes. I also recommend The Peoples' Pharmacy, a weekly radio program out of University of North Carolina, where health conditions are discussed and experts interviewed in a variety of health fields (peoplespharmacy.org).
STEP 5: TAKE STOCK OF RELATIONSHIPS
Social support is crucial for everyone, particularly for those with chronic illness. MCS sufferers tend to be further challenged given that our culture rests upon the chemical industry and distrusts "emerging illness" conditions. If you have a supportive significant other, discuss with this person how you will restructure your time, tasks, and interactions in order to avoid your illness triggers. It is virtually impossible to re-construct your life in a positive way with someone working against you. Seek education or partner counseling from a savvy therapist. The cold truth is either they get it or they don't.
If you are "alone," you have neither the hassles nor the support of a permanent partner, and you will end up having to do more for yourself. Children will need educating and must realize that it is unacceptable to "disbelieve" you're ill, to bring home fragranced friends, or otherwise ignore your needs. Any refusal to make modifications may warrant a review of where the power is in the parent-child relationship, and a call for the need of change in the dynamic. A "friend" assessment may also be needed: who can be supportive, who can be educated, and who will never get it.Moving away from those who can't support you will make room for those who can. Sometimes new support and friends can be found in area MCS support groups with others who understand sensitivities.
STEP 6: LOCATING ACCESS TO COMMUNITY
It will be necessary to identify which community resources (i.e., libraries, stores, medical offices, restaurants, and professional offices) you can access and meet your basic needs. You may only have access to an establishment during the summer, due to petrochemical heating in winter.You may need to make special arrangements if any are truly inaccessible, for example, making numerous phone calls to learn if and what pesticides, heat sources, etc., they are using, or asking someone to go to the health food store for you. You may even need to be proactive about creating a network for you and others like you so that you have access to the community services that non-MCS sufferers do.
STEP 7: TAKE STOCK OF YOUR IDENTITY
Who you are is bound to change as a result of developing a disabling condition. You may lose both smaller (hobbies and pastimes) as well as very large aspects (work or partner identity) of your life. The shake-up to your identity can be substantial. Taking stock of what is still intact and what was given up can be helpful. Our study of those with MCS and identity changes revealed that not all the changes are bad. Although people mourned the loss of work, conventional beauty, and other self-constructions, they found value in the growth of learning who their true friends were, developing new abilities, becoming environmental advocates, and deepening their spirituality. There is no easy or quick path to development through MCS, but people did grow tremendously, becoming what Goodheart and Lansing call "phoenixes" rising from the ashes of chronic illness.
Though it may not be as magical a journey as Dorothy's Oz, you can start with basic building blocks for a viable life with a condition not yet accepted by industrial culture. You can begin today by putting practical changes in place that will be the foundation of an unusual, yet productive life.
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