a friend's view of MCS, chronic illness, disability, environmental illness, fragrance free schools, friendship, health, ignorance, Invisible Illness Awareness Week, Love, MCS, multiple chemical sensitivities, statistics of MCS, toxic chemicals, wplongform
For day 5 of Invisible Illness Awareness Week, my buddy Beth has agreed to give her perspective of what it is like having a friend disabled from MCS. In a Canadian study, in 2010, over 800,000 people were diagnosed with MCS (Multiple Chemical Sensitivities) a 31% increase in 5 years. Those during the same time period with one or more of Chronic Fatigue, Fibromyalgia, and MCS were 1,415,000 (a 25% increase). This study excluded children with MCS and focused mostly on people with MCS diagnosed by a doctor. I personally went undiagnosed for decades. I avoided the triggers of perfume as much as I could. I figured there was nothing a doctor could do for me anyway and why be just another statistic. I now understand how important it is for our governments to have accurate statistics. The more people who give MCS a voice — the more likely we are to mandate change. These statistics also do not include those so disabled with MCS they can’t physically get to a doctor. I include Canadian statistics rather than the US not because they are higher than the US but rather the opposite. Canada is taking measures to address this issue and still the numbers affected are growing. For more info please visit Linda’s site. And I want you to see this is a worldwide problem.
For every person affected by MCS there is a cascading effect. Mom’s with MCS cannot go to parent-teacher conferences at their kids’ schools. Dads can no longer earn a living and support themselves and their families. Friends can no longer go to the movies. Brothers and sisters see an empty chair at family functions. MCS does NOT just affect the person who has been diagnosed — it affects — families, friends, the work force, and the global society as a whole.
So in Beth’s words this is the effect of my diagnosis of MCS on her life:
Two years ago my life changed in a very unexpected and impactful way. My closest friend became very ill from her body’s negative reaction to toxic chemicals that she was exposed to over the years, mostly at the school that she taught at for over nineteen years. The reason that my life changed as a result of Colleen’s life threatening illness-MCS, is because I wanted to continue to be a part of her life and keep her healthy and in doing so, I had to change the products that I used. This was not as easy as one would think, mostly because I was not educated to what products were safe to use until I began to listen to Colleen continue to teach me as well as numerous others by learning about her daily challenges of toxic chemical exposures and reading her blog.
Our homes are supposedly our safe zones because we control the products we purchase and use, however, I never realized that many of the products that I used on a daily basis contain toxic chemicals that cause great harm to my health as well as my family and friends including Colleen. Many of the products that I use now do not contain toxic chemicals including shampoos and conditioners, water based nail polishes, make up, laundry soap, hand soap and bath soap, and I also use vinegar and baking soda to clean. Using these products allows Colleen to spend time in my home and be around me. And the other upside is that I am keeping my family and other friends free from the damage that toxic chemicals cause to our health. There are products, however, that contain harmful chemicals that we still use mostly out of habit and not doing the homework to find an alternative including fertilizer to keep weeds out of our grass and insecticides to prevent the Japanese beetles from killing several bushes in my yard. Colleen reminds me that there is generally an alternative product that we can use as simple as soap in a shallow dish of water to kill the Japanese beetles and even though some toxic free products cost more, there are other products such as vinegar and baking soda to use as cleaning products that are much less expensive.
Unfortunately, we cannot control the products that others use around us outside of our homes that contain toxic chemicals. I have never seen a fragrance free sign posted on any building and since learning about toxic chemicals, I find that I am sensitive to smells and don’t feel well when I’m around people wearing perfume and cologne and have difficulty spending much time in stores that have scented candles and fragrances. I also do not miss the other products that I have replaced. The easy part has been making the changes in many of the products that I use, but the often difficult challenge is finding alternative products and the overwhelming challenge is educating others. For this reason I have a deep respect for Colleen’s commitment to educate others over the past two years.
Another important lesson that Colleen has taught me is that a product that is labeled “natural” does not necessarily make it is toxic free and can be misleading. I believe the US government has a responsibility to keep us safe, the manufacturing of only toxic free products seems like a no brainer since everyone is negatively impacted by toxic chemicals produced for consumer use. Why are we not educated to the negative health impact of toxic chemicals in the products we use every day? I never heard of MCS before Colleen became so ill and the serious implications that chemicals in our products cause to our health.
I miss going shopping and out to eat at restaurants with Colleen. I am constantly worried about Colleen’s health and wish that her focus in life wasn’t about the daily exposures that make her so sick. If society was educated to the seriousness of a person wearing perfume and using other products with toxic chemicals, Colleen and many others would enjoy living life with society instead of living life in seclusion with the constant threat of becoming seriously ill or possibly dying from toxic chemical exposure. Even though Colleen and I have found other activities to do that are generally safer for her to do including eating somewhere outside or walking in the woods. There is always the threat of her being exposed by others doing these activities such as someone walking by us wearing cologne or driving by someone sealing their driveway on the way back from a walk around Beaver Lake. It breaks my heart that Colleen is sick more than she is healthy, she probably would not recover from an illness that required hospitalization or return to teaching in a “safe” building, I am equally saddened that she has had to change her life to accommodate for her illness including not being able to fulfill her lifelong dream of flying overseas to Ireland and experiencing a single day of feeling completely healthy. I do believe, however, that Colleen does fulfill other dreams by continuing to teach and educate in inspiring ways through her blog and being a caring and loving friend.
Yes, my life has changed in many ways over these past two years, but it is not only my life that has been impacted. I can enjoy time with my friend Colleen, make the choice to purchase toxic free products, and continue to share with others what I have learned from Colleen and her blog. Knowledge is power and we all still have a lot to learn, but small steps are better than no steps at all.
Thank you Beth for your love and support and for being my sister from another mother. Thank you Sonda for the use of the IIAW badges I used on this post. Thank you Linda for the comprehensive statistics on your site. Thank you to everyone who read this and decided today to make a change because no human suffers alone. We are all one.
Beth and Colleen