Living With MCS
Because we are virtually inundated with chemicals in modern society, living with Multiple Chemical Sensitivities (MCS) presents overwhelming challenges. Groups such as HEAL of Southern Arizona provide information and support urgently needed by people with MCS and their families. Judging by the many thousands of inquiries our Helpline has received over the years from people from all walks of life, in the US and elsewhere, most people with MCS are in need of the following:
Education About MCS…
People with MCS need to become well informed and stay well informed about the illness in order to improve their health and quality of life. They may also need to educate others with whom they have contact, such as family members, friends, health care practitioners, schools, and employers.
· HEAL of Southern Arizona has a quarterly newsletter Ecologic News, brochure, helpline, meetings, and Resource List with recommended books, pamphlets, videos, and organizations.
· Networking with other MCS sufferers can be extremely helpful, but always remember that what is safe for one person may not be safe for another.
· See national HEAL’s magazine The Human Ecologist and other MCS publications.
Safe Medical Care…
Diagnosis and treatment
Obtaining an early diagnosis of MCS is critical in order to prevent further deterioration of health. Only a handful of doctors have been trained to diagnose and treat MCS (there is presently no cure, though some benefit from some treatments).
· The American Academy of Environmental Medicine (AAEM) has a national list of referable physicians.
· HEAL of Southern Arizona maintains a list of local member-recommended health care practitioners, including dentists, who are familiar with MCS and some of the special needs of MCS patients.
Well-ventilated facilities with fragrance-free, smoke-free personnel using least-toxic materials, procedures, and cleaning products can help people with MCS avoid severe reactions when seeking medical care.
· Routine medical care: The MCS Accommodations Letter, personalized for you and signed by your doctor, will help explain the kinds of accommodations you need.
· Emergency care and hospitalization: routinely used practices can be harmful, even life threatening, to people with MCS. Wearing a Medic Alert bracelet, preparing special instructions for scheduled surgery, and carrying special instructions such as the MCS Accommodations Letter at all times can be a lifesaver. Medical personnel can refer to this website in an emergency - see hospital access.
Safe Necessities: Food, Water, Clothing, Bedding, Furnishings…
Organic produce, uncontaminated filtered water, air filters, and untreated natural fiber clothing and bedding are necessities, not luxuries, for people with MCS. In many cases, possessions need to be disposed of because they are no longer tolerable.
· Consult HEAL of Southern Arizona’s newsletter and Resource List for suppliers, local and national
· Consult The Human Ecologist and other MCS publications.
Safe Housing In A Safe Environment…
Arizona has become a magnet for people with MCS seeking a warm, dry climate with lower mold and pollution levels. People with MCS from all over the country considering relocation contact HEAL of Southern Arizona for information about Tucson and surrounding areas, but safe, affordable housing is extremely difficult to find anywhere.
· For general information, see housing
· Re housing in the Tucson area:
Temporary lodging: see the Resource List of member-recommended lodging facilities; some people with MCS camp out in tents or in their vehicles (this includes people who rent or even own housing but cannot live in it, either because the home itself is unsafe, or because of pesticides, painting, roofing, asphalting, etc. in the neighborhood).
Rentals: It is extremely difficult for people with MCS to find “safe” (tolerable) rental housing in Tucson due to the widespread use of pesticides, carpeting, and gas appliances.
Buying/building: Those who can afford it generally either buy and remodel existing housing, or build pesticide-free, all-electric homes with tile floors, low-VOC paints, etc. HEAL of Southern Arizona’s Resource List and Lending Library, as well as the Internet and the Public Library, contain information on safe building and remodeling.
Public housing: Tucson has no safe public housing facilities for people with MCS. Those in need of low-cost housing often either apply for Section 8 or renovate old trailers.
No matter how much they may want to continue working, employees who develop MCS are usually unable to do so without jeopardizing their health. No amount of accommodation seems sufficient to adequately protect highly sensitive individuals in the workplace. The high cost of specialized medical testing and treatments (seldom covered by insurance), and of organic food, clothing, furnishings, supplements, and possibly relocation, can quickly deplete savings.
· It may take persistence, but many people with MCS have successfully obtained disability benefits. To find out about basic eligibility requirements and start the application process for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI), call the Social Security Administration 800 number listed in the phone book.
· When applying for benefits, it is very important to seek out doctors who understand the illness, are supportive, and can provide the documentation that will satisfy the criteria for disability (see Safe Medical Care – Diagnosis and Treatment, above).
…to Goods and Services: For people who are severely chemically sensitive, virtually all public buildings are off-limits. Scented personnel, renovations, tobacco products, and the widespread use of pesticides, toxic cleaning products, building materials and furnishings are barriers to access for people with MCS. Measures for accommodation as provided for by the Americans with Disabilities Act include providing service by phone, mail, e-mail, or outdoors when practical > more. HEAL of Southern Arizona can provide further information on accommodation.
…to Home Health Care: People afflicted with MCS and often with complicating conditions, such as CFIDS, asthma, fibromyalgia, and rheumatoid arthritis, may require help with shopping, housekeeping, personal care, and skilled nursing care. It is vital that home health care providers not use products that could make a chemically sensitive patient ill and could contaminate safe living quarters.
· Consult HEAL of Southern Arizona’s Resource List for names and sources of safer products.
· Individual requirements and tolerances vary, and what is safe for one person with MCS may not be safe for another. Always err on the side of caution, and when in doubt, ask.
…to Counseling: It must be emphasized that MCS is a physical, not psychological, illness. However, reactions to chemicals can affect the part of the brain that governs emotion, and can cause changes in behavior that could be mistaken for other conditions. In any case, people with MCS often seek counseling for depression; relationship problems; feelings of loss, loneliness, isolation; homelessness; etc.
· Counseling should be provided in a safe environment by staff that understand MCS and take the necessary precautions to protect the individual client (see Less Toxic Personal Products and Less Toxic Cleaning Products).
· Consult HEAL of Southern Arizona’s Resource List for names and sources of safe products.
· What is safe for one person with MCS may not be safe for another. Always err on the side of caution, and when in doubt, ask.
Struggling to avoid devastating reactions to common chemicals found virtually everywhere, people with MCS become increasingly isolated. Support and understanding from family, friends, neighbors, agencies, on the job, and from support groups such as HEAL of Southern Arizona are vital. See:
Copyright 2001-2010, HEAL of Southern Arizona. All rights reserved. Updated 1/12/2010