July 27, 2005
To Whom it May Concern,
I lived in Providence, RI from January of 1995 through August of 2004. Soon after my arrival, I went on disability for the disabling illness Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), which I had contracted 2 1/2 years earlier. Later, I developed a secondary condition called Multiple Chemical Sensitivities (MCS), which caused me to get extremely ill from exposure to common chemicals found in body care products, laundry detergents, cleaning agents, pesticides, and building materials. Like others with severe MCS, I risked permanent injury or death from exposure to ubiquitous chemicals, and had to practice nearly total avoidance of them to keep from getting worse. I was already generally homebound and mostly bedridden, and sorely without services or practical help, so any worsening of my condition was a terrifying prospect.
While CFIDS made my life very restricted, MCS threw me into exile. I suddenly found that almost no venues were accessible to me due to the copious use of fragrance-containing body care products, toxic cleaning products, and health-threatening building materials. This meant that all basic human services were denied me -- including legal services, health care, and home care. I could not pursue medical care in Rhode Island, except for on rare occasions when I found a fragrance-free* (see terminology below) care provider to do a home visit, or when I educated one doctor to make his office fragrance and chemical free so that I could go to appointments. My reactions to chemicals became so severe that I could suffer a permanent worsening of my condition from one exposure, often leaving me bedridden for months at a time (even years).
Despite having one of the most disabling conditions around (CFIDS has been found in studies to be more functionally disabling than heart disease, other chronic illnesses, and HIV), I found it nearly impossible to get home care services such as visiting nurses or PCA/homemaker services to accommodate my secondary disability, MCS. For example, I was approved by a program in Rhode Island for funded homemaker services that were direly needed: however, the agency would not allow me to seek out an attendant who could be fragrance and chemical-free, and thus I had to forgo this much-needed help. Similarly, my doctor ordered potentially helpful visits from a Visiting Nurse, but the VNA would not provide me with a nurse who accommodated my disability, so I had forgo those services as well.
When I had abnormal tests -- such as abnormal EKGs -- I could not see specialists for the most part due to the toxic office spaces and nurses and technicians using fragrance-containing products. When I had breast surgery to remove a lump, I could not go for my follow-up visits due to the toxic cleaning products used in the facility. Specialty appointments -- such as gynecological care or dental care -- were generally impossible. None of these offices made efforts to accommodate people with MCS, and I could not enter their facilities without risking severe reactions.
Emergency medical care was my greatest fear. Although Miriam Hospital was just blocks from my house, they did not have any provisions in place for the treatment of patients with MCS. I could be severely injured from hospital cleaning products, latex, sanitizing chemicals, and -- mainly -- the staff and their personal care products. Ironically, doctors and nurses made me ill to the point that I could barely even talk and advocate for my own care, due to the fact that they all wore scented products and washed their hands frequently in scented soaps. Chemical reactions caused instant cognitive dysfunction which made me lose memory, stammer, have breathing problems, and lose the ability to form sentences. I knew that if I had a situation requiring emergency medical care, I was in big trouble.
One such occasion occurred when I began to have symptoms of acute appendicitis. I suddenly began to have unbearable abdominal pain (especially when I tried to eat or drink), a high fever, and other symptoms that were unusually severe so I ultimately needed to go to the ER. I figured I would be out of there in no time, but after running some tests the staff wanted to admit me for two days. Due to my symptoms and tests, they thought I had appendicitis (though the tests were not fully conclusive) and wanted to wait for the staff surgeon to arrive to decide if they should operate immediately or simply keep me under observation. I was so delirious that I signed my name on the admission papers. When I fully realized what had transpired, I begged the nurses to let me leave. I was getting sicker by the hour, but not from appendicitis -- from nurses hovering near me with hairspray, deodorant, and scented soap. Thankfully, once I put a call in to my physician (the one with the scent-free office), he advocated for me and got them to release me, against their better judgment. They told me I could be in a life-threatening situation, that my appendix could rupture, and that it was against their better judgment to send me home. They did not comprehend that it was even more life-threatening for me to stay in their care.
Fortunately, one of my neighbors was a scent-free acupuncturist who was willing to do a home visit, and she treated me with alternative medicine (in China, acupuncturists are often the first line of defense against appendicitis). Miraculously, her treatment cleared up my symptoms, even though I spent well over a week unable to eat solid food.
Since so many people suffer adverse reactions to chemicals in fragrances, and since children and others are increasingly vulnerable to chemicals in cleaning and building products, it is imperative that health care facilities address these concerns. For those of us with MCS, CFIDS, and related conditions such as Gulf War Syndrome, these chemicals can be life-threatening or can cause permanent neurological damage. Very few hospitals and medical facilities take into account the underserved population of chemically vulnerable people. We need facilities we can go to for health care, and providers who make a commitment to use fragrance free products so that their clothes, hair, and skin won't make patients sick.
I believe all health care facilities in Rhode Island -- and particularly those that are state-funded -- should implement chemical and fragrance-free staff policies. Staff should be fully educated on the risks of their personal care products and laundry soaps for patients with asthma, MCS, and other conditions. Additionally, RI hospitals should implement safer cleaning policies, such as those recommended in Deirdre Imus' "Greening the Cleaning" or in the Health Care Without Harm guidelines (see references below) to minimize the use of harmful chemicals in health care settings. State-funded programs such as those provided by the VMA and Centers for Independent Living should always have provisions for those who are chemically vulnerable.
In addition, hospitals should keep on hand special guidelines and "crash carts" for patients with MCS. Staff should know to isolate MCS patients from others patients, keep them near open windows if possible, make sure they receive fragrance-free bed linens, provide them medical oxygen with nontoxic tubing, and ask them about their specific needs. In addition, staff should be made aware of the special carts for MCS patients, and these carts should offer latex-free gloves, adhesive-free bandages (or bandages utilizing natural adhesives), tygon oxygen tubing or specially treated cannulas, hydrogen peroxide swabs, fragrance-free Castile soap wipes, and other items that will create a non-injurious environment for the chemically vulnerable. In addition, signs should be available to place near the rooms of the chemically vulnerable, to warn doctors and other staff not to bring in toxic products, flowers, and other items that might cause a reaction.
Thank you for listening to these concerns.
Editor of “Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome” http://www.angelfire.com/ri/strickenbk
*"Fragrance free" is an often-misunderstood term. It does not simply mean "without perfume." To be fragrance free, providers must use natural, fragrance free body care products to substitute for their detergent, lotion, shampoo, soap, deodorant, hair products, etc. Nontoxic, fragrance free products are typically only sold in health food stores or through catalogues, as conventional stores use the terms "unscented" and "fragrance free" to refer to products that contain masking fragrances, which are chemical fragrances that "mask" scents but still injure the chemically vulnerable.
The Living Source: Supplies tygon oxygen tubing and specially treated cannulas for the chemically sensitive. http://www.livingsource.com/
Greening the Cleaning Product Line: Institutional Cleaning Products Specifically Geared Toward Hospital Use and Reduced Toxicity. Pricing and Ordering, 201-336-8071 http://www.dienviro.com/index1.aspx?BD=17866
Health Care Without Harm: http://www.noharm.org/
Needs http://www.needs.com Sells an extensive selection of fragrance free products