In February of 2007 I was diagnosed with Multiple Chemical Sensitivity (MCS). The suspected culprit was a combination of exposure to black mold and airborne formaldehyde in the form of off gassing paint and carpets. It presented as flue like symptoms that would come and go without me ever really getting a proper ‘flue’. I had sinus infections that would sort of respond to an antibiotic only to come back again a week or a month later. I was exhausted all the time for no apparent reason and struggled to stay focused on work and tasks. I developed allergies to things I’d never had trouble with before.
The final triggering event turned out to be a trip to Disneyland in the fall of 2006 that sent me to the ER with full body hives and, by the time I arrived at the hospital, my voice deepening as my throat started to swell. They rushed me into triage and filled me with fluids and liquid antihistamines. I lucked out. That was all they needed to do. The hives hung around, but I never stopped breathing and after a few hours the doctors released me with orders to take the prednisone they prescribed and call my doctor when I got home. I was even allowed to go back to the park the next day as long as I took it easy.
MCS is hard to diagnosis and often very hard to get support for because it manifests differently in almost every person. A lot of what is known about the illness is based on personal reports and the few doctors who have chosen to focus on studying it.
For me, MCS manifests as an allergic reaction to often very low doses of chemicals, both organic and synthetic. The most common problems for me are scented products like shampoo, conditioner, body wash, moisturizer, laundry detergent, fabric softener and of course, perfume. My reactions are anything from “hay fever” type symptoms to anaphylaxis, and everything in between. I’m also allergic to a whole lot of “standard” things like dust mites, pollen from a several trees and have an assortment of food sensitivities. Thankfully I am not allergic to cats or I would probably cry and then refuse to let mine go.
After the Disneyland trip things got much, much worse. I was home for a week on doctor’s orders while the hives faded and my system calmed down. I remember the morning I went back to work. I watch my foot cross the threshold into the elevator and thought “I can’t do this”. My husband and I had been tracking my symptoms, and while the revolving door of doctors had no idea what to do with me beyond tell me “you’re fat, female, and approaching 40, lose some weight and take an antidepressant”, we knew something was not right. I’d been suspicious that it was all related to the building I worked in because the timing of the on set of my symptoms lined up with both the remodel that was done on the office across the hall from mine, the repainting and re-carpeting of all the common halls in the building, and repainting and re-carpeting I helped arrange for in our office – specifically the front where I worked. So that first morning back I knew deep in my gut that I was walking back into hell.
By the end of the month it was clear I was worse. We could see me get progressively sicker during the work week, rebound over the weekend only to start fading by Wednesday. A month after the trip my husband told me to quit my job, we’d figure out how to manage, but I needed away from the environment that was making me sicker by the day. I did. I went down to two full days a week while the boss worked out how to replace me. That quickly became two partial days and then working from home and calling in to talk my replacement through learning the job.
There is no cure for MCS and the main pharmaceutical treatments in my case have been antihistamines, asthma medications & inhalers, eye drops, and my EpiPen. Over the years I have worked with many different healing practices including allergy shots, acupuncture, chiropractic, massage, and herbal/nutritional support. All of them have been useful at different times to different degrees.
Probably the most successful thing for me has been avoidance. Since going ‘out’ was a minefield in the early years, we focused on making our home safe. We combed through our house multiple times looking for potential problems and getting rid of them. We got dust mite covers for our bed, pillows and blankets. We cleaned out clutter to minimize dust and keep the house as clear as possible (not so easy when our kids were younger). We hunted down and eradicated places where mold was growing in our house and developed a set of protocols for cleaning and maintenance to keep the mold from growing back, which worked up until CA had several winters of unusually heavy rains. I mostly avoid mass transit because so many people wear perfumes and/or other scented products that make the air a soup of toxins. I learned what stores I sould and could not go into – pretty much all fabric, crafting and clothing stores were off limits for years and even now are take planning and limited time inside. And all the hardware and paint stores are right out.
While going out was complicated and put me at risk for exposures, staying home was not always possible. To lower the risks, in 2007 I started wearing masks with removable filters that could screen out many of the compounds that were problematic. Those first weeks were hard! It felt weird and alien and awful. But it helped, so I kept at it. And being me, I looked for ways to decorate the dumb things because if I was going to have to wear them all the time they were going to be pretty, damn it! And my decorated masks were born.
One of the hardest thing has been the isolation and suddenly not being able to work. Mind you I spent about three years sleeping, but between naps I was stuck not knowing what to do with a life that had suddenly ground to a halt beyond doctor’s appointments. I spent about a year coloring mandalas in coloring book. I started dating the pages when I realized I was working through alot of emotions in those colors. The altar dolls, of which you can see examples here, became both a healing tool and a way to sane while stuck at home for weeks on end. And eventually a dear friend coaxed me into visiting her ceramics class and seeing if I could tolerate mild chemicals there. That ended up being a brilliant idea. Ceramics is very low on allergens and volatile organic compounds (VOCs). I can’t spend much time in the kiln room because of the propane used to fire them, but other than at? The ceramic studio quickly became one of my favorite places to hang out.
I still have MCS. I still react to tonnes of things. I still have tough days. But I’m better. When I first got sick I had no idea how I would live outside of the bubble prescribed for me. I can’t tell you which step or tool got me to where I am today, only that I am here. That’s what counts.
From more information about MCS:
Sheila Bastien, Ph.D – “Multiple Chemical Sensitivities (MCS): What It Is, What It Is Not, And How It Is Manifested”
Claudia S. Miller – “Toxicant-induced Loss of Tolerance – An Emerging Theory of Disease?”
And an article by yours truly:
“How to be Friends with People who have Allergies and Chemical Sensitivities“ first published on Artfire.com Fall 2008