Q ~ If you could tell the world ONE thing about your life with MCS/ES (or any other invisible disability that has MCS/ES as a symptom), what would it be?
A ~ What I’d really like to tell the world about my life is a full explanation of MCS, such that everyone would understand it enough to prevent, treat and accommodate me and everyone with this illness. That seems like more than I could do even if I had a whole book rather than a blog post. So I will focus my answer on something a bit more manageable.
I would tell the world that the invisible nature of this illness affects me on many levels. Some of the substances I react to are invisible, though they are obviously detected by my body. Some of my symptoms are invisible to others, but are still felt by me and still limit my abilities. Most importantly, the primary survival mechanism of chemical sensitivity is avoidance, which means that I have to avoid public places. Thus, the sicker I am, the more invisible I am to my community. That invisible nature of this illness is the most devastating part for me.
Q ~ How has this one thing affected your life?
A ~ The invisible nature of MCS has affected me by making my struggles feel invisible and thus unimportant. When I was a severe reactor I was isolated and unseen except by family. We humans are not designed for isolation; we need human interaction. That psychological blow made it so much harder to heal. Now that I have recovered enough to be a moderate reactor, my struggle to maintain functionality is invisible except to those I live with. I frequently feel like I live a double life, with the harder part being invisible as I struggle very hard to maintain what looks superficially like a normal life. It feels deceptive and that means that I am difficult to know. So the invisible isolation continues.
Q ~ If this one thing were changed, how would your life be different?
I really can’t even imagine how much my life would change if others could see my disabling chemical sensitivities. For example, what if the fellow parents who I will see at my daughter’s elementary school talent show could somehow see that my attendance in the auditorium tonight means sacrifice and consequences. There was 48 hours of strict avoidance beforehand, activities and errands that got cancelled so that I would have a good chance of attending the performance. My presence there will then result in 48 hours of pain and discomfort as my body reacts to carpet outgassing and people’s fragranced body products. If they could see all that, then my life would be different because people would understand me better. I would feel less isolated, less marginalized.
And think of all those other lives that might be changed if they could see the chain of events involved in my presence at a public space event. Certainly, some people would think twice about their hairspray the next day. Less fragranced parents would mean the next time it might be easier for me to be in that auditorium. So visibility would improve my emotional well being and promote the kind of awareness that motivates real change in people’s chemical choices.
If we could apply that same magic wand of visibility to all those canaries who are living out of their cars, or in a remote rural location, or stuck in their urban apartment, or anyone who has been forced to remove themselves from societal view, then we might see real change. But being visible risks our health. To survive we must remove ourselves, our physical absence makes us invisible, our invisibility makes it easier to maintain the status quo, the status quo means we must remove ourselves. It’s an awful self perpetuating cycle.
Amy Bayard was a research scientist until toxicant induced loss of tolerance (TILT) changed her life. Now she lives with MCS and raises her kids in Florida. She is a regular contributor to HEAL’s The Human Ecologist and blogs at http://www.tiltedmom.com.