April describes her experience of living with Multiple Chemical Sensitivities. [please note that this video has poor sound quality]
Hello, I am Carole and have an educational and professional background in nursing, child and youth behavior, physical rehab and environmental health.
I have been living with MCS – Multiple Chemical Sensitivities for 10 plus years. I was first diagnosed with Fibromyalgia, Chronic Fatigue and Sjogrens. Several years, many specialists and alternative therapies later, I was diagnosed with MCS, multiple food allergies, gluten-intolerance and Scleroderma. My autoimmune system is compromised; frankly, my body is under attack by its own cells and it is unable to detoxify without medical measures.
Prior to diagnosis with MCS/ES –Environmental Sensitivities, my health was rapidly declining following a significant life event. My search for recovery began earlier than this event, when I noticed changes in my cognitive abilities, sleep pattern, weight, pain levels and physical abilities. Months later, working as a community nurse became a very great challenge. Within 6 months and several periods of absences, I resigned on the recommendation of a GP. Symptoms significantly increased plus there was dramatic weight loss and I had difficulties with daily living activities. My main income was from the social system. My main focus became caring for my child and my health. Life changed. Thankfully I found a great Environmental Medicine Doctor whose methodology treated the root cause, and I could glimpse hope for change in my wellbeing.
I continue to be chemically ill, gluten intolerant, etc. However, I manage significantly better with air flow barriers in my apartment, a rotation diet of organic food (when possible), R-O water, carbon and hepa filter air purifier, carbon filter mask when needed, resuming some physical, social and spiritual activities outside my home, giving back to an organization for MCS/ES sufferers, EHAO-Environmental Health Association of Ontario. EHAO provided resources like CERA’s contact information, networking opportunities and I was reminded I am not alone with this invisible and misunderstood illness. I had opportunity to give back to this organization, thus able to remind others with ES that the general public’s impression is not the truth we live. We know we are not mentally ill, hypochondriacs, or from another planet. We know the chemical soup of society does not fit well with our compromised immune and detoxifying systems; for some of us, it may be the cause of our illness, for others, the cause is rooted elsewhere. Regardless, we know our body’s immune and detoxification systems do not function as most and cannot process and flush the toxic chemical soup of modern society.
I am grateful for the compassion, understanding, knowledge of my Environmental Medicine Doctor, family and friends, and social services, plus the collaboration that occurred with the landowner, property manager and superintendent of my building. The relationship with the management team was built with the help of CERA as advocate, who required medical-legal documents and openness from both parties, since initially discussing accommodations was adversarial. Once management understood that the Ontario Human Rights and the Canadian Human Rights Commissions acknowledges ES as a compensatable disability and they are obligated to accommodate, the relationship changed positively. Providing management with potential resources of ‘safe’ products fostered this process. CERA developed guidelines for Landowners to accommodate identified MCS tenants, resources for supplies of low VOC and green products and other ways to create healthy apartment living now available on their website.
I wish I knew CERA earlier, likely avoiding prolonged debilitation due to poor air quality. With the small accommodations property management have provided, the treatments I now receive have opportunity to effect my health positively with a reasonably chemically ‘safe’ place in which to live. I know this because there is significant change in my health status after the accommodations were made. Dates, no-VOC products, renovations coordinated with voluntary apartment absences, have contributed to an improved, not perfect, living environment in my ‘home’. I am grateful for the working relationship we have established.
Suzanne describes living with environmental sensitivities and provides some strategies for housing providers. [please note that this video has poor sound quality]
If you are one of the few Ontarians that doesn’t have Multiple Chemical Sensitivities (MCS) or doesn’t have a relative, a friend, a co-worker, who has MCS then please read on. If you are one of the more than a quarter of a million Ontarians who have Multiple Chemical Sensitivities (217,000 in 2005, Statistics Canada), also known as Environmental Sensitivities (ES), a human rights disability, then you know how desperately important healthy, safe housing is to improving your health, to making life livable.
I had no idea that when I started experiencing increasing migraines, sudden weight gain, rashes, coughing, IBS, difficulty concentrating, irritability, and other symptoms at work, that I was developing MCS/ES. Very small amounts of chemicals found in fabric softener, air freshener, perfume, scented personal care products, detergents, pesticides and more, were toxic to my body — chemically injuring the organs of my body. At first, I would be fine when I returned home, but over many months, the exposures to chemicals caused chronic MCS/ES and my home was no longer safe. I needed, what is known in human rights as ’a scent-free/chemical avoidance’ environment. And so I began the search for safe housing.
My first attempt was completely unsuccessful, mainly because it takes a great deal of research to know what is safe and what is not safe. I can tell you now that living near ‘brownfield’ remediation is not safe, living near a major street or highway is not safe; neighbours using fabric softener, detergents like Tide or Gain and venting these chemicals out of hot dryers; pesticide use in the neighbourhood, industry, rail lines and gas stations nearby; and the list goes on. Also, the house, itself, was not safe. Air freshener residue is very hard, if not impossible, to remove; products such as laminate and carpets ‘off-gas’; mold can make life impossible; and, again, the list goes on.
My last attempt at safe housing seemed to be almost perfect: wood floors, no scented products used for cleaning, radiant heat, no laundry exhaust near my unit from neighbours, no industry, and lots of trees. However, I had forgotten the most important thing of all: “For people with environmental sensitivities, their health . . . rests with the actions of others. . . .” [Canadian Human Rights Commission, The Medical Perspective on Environmental Sensitivities, 2007] When I asked for accommodation for my disability, some residents were very co-operative, but some were not — there was discrimination, reprisals, threats, and lots of chemical injury (e.g. cologne worn in the hallway by those who never used it before; cleaning the carpets in the halls chemically instead of using steam cleaning; cleaning common areas with ‘green’ scented products instead of the vinegar and water used before; running a truck motor under my window).
I foolishly assumed that people would understand that the environment is healthier for everyone when it is chemical-free: better for those with asthma, cancer, and respiratory disease; better for babies and children (studies show that the use of air fresheners causes new moms to be more depressed and babies to have stomach and other problems), the frail, the elderly.
I shared information available on MCS/ES, toxic chemicals, safe products: CERA (Multi-unit buildings and accommodating MCS), Canadian Human Rights Commission (policy and two papers on ES), The Environmental Working Group www.ewg.org on product safety, www.lesstoxicguide.ca on products, and many more. The Ontario Human Rights Commission recognizes MCS/ES as a non-evident disability. And The Standards for Customer Service, Accessibility for Ontarians with Disabilities Act, provides for accessibility for all disabilities in buildings with at least one employee, starting January 2012.
However, knowing you have a right to accessibility is very different from being able to get that accessibility, especially when you are dependent on people‘s good will and you have no guarantee that the future will not bring new chemical injuries. After many months of sharing information on MCS/ES, letter writing, record keeping (very important!), taking legal action, it became evident that this was going to be an on-going struggle in a ‘toxic’ environment, both chemical and emotional.
I will be moving once again, hopefully to a kinder, safer environment. And this is the struggle for most people disabled with ES/MCS: finding a safe oasis from a ‘chemically charged‘ world and finding understanding. Attitudes will change over time, just as they changed in relation to cigarettes and smoking. When people realize that they or their loved ones are suffering unnecessarily from chemical exposures, they change. Of course, that doesn’t help the thousands of people with MCS/ES that need healthy housing today — but, if each of us does our part to use only safe products, to spread the word about MCS/ES, to make our homes healthy indoor spaces with good air quality, then our environment, our homes, can become safer for those with MCS/ES, safer for all.