The following is a letter shared anonymously by a patient with environmental sensitivities, written to help friends and family understand their diagnosis and how the condition impacts their daily life, habits, and interactions.
Dearest friends and beloved family,
There has been a secret between us. It is the reason for why you feel the cool distance and uncomfortable awkwardness when we are together. I don't talk about the way I am to very many people because most don't understand even though they say that they will or that they do. (Some take what I am saying about myself personally and get offended.) Then, once it is out there it can't be taken back. It changes things between us. Usually, my confession makes no difference anyway except to add to the cavernous distance.
I’m ready to take a chance and tell you what my secret is.
Here goes. I’m a “sensitive one”. I feel the world in ways that seem impossible to others. I am sensitive to everything; especially chemicals.
If you know me, you've known about my many super sensitivities. You just haven't taken me seriously. Nobody ever does. That might be on me. I don't make the fuss that perhaps is deserving of my situation. (I am a passionate advocate for others, but not so much when it comes to myself.) Besides I often don’t have the physical stamina to expend the energy I need to face such doubt. And like I said its not likely to make much of a difference anyway.
The medical diagnosis is Multiple Chemical Sensitivities. I am deeply affected in body, mind, and spirit by the multitude of chemicals in the environment and in foods (not to mention toxic emotions like hatred, fear, intolerance, and prejudice). My body reacts with rashes, itchiness, headaches, weakness, fatigue, and sometimes full-blown flu-like symptoms. My mind becomes foggy and incoherent. My spirit feels powerful emotions like rage and depression. I only go out into society when absolutely necessary and when I do, I suffer greatly. Even a short trip to the grocery store can mean hours to weeks of recovery. The longer and more concentrated my exposure, the longer and more intense the recovery.
Unless it is vital, I don’t allow anyone in my home who is not chemical free. That is my one sanctuary. My home is the one place in the world where I can actually breathe freely. Though when any member of the family ventures out, we absorb the powerful chemical scents into our clothes and in our hair and bring them back into the house. It can take hours, days, or even weeks for them to fade and for the house to get aired out.
The hardest part of this sensitivity is the isolation from friends and family. And harder yet is when these people that we love dearly, either don’t believe us or don’t take us seriously. We have seen repeatedly that when presented with a choice of us or the chemicals, they choose the chemicals. And so, we stop talking about it and we suffer in silence.
Though we are diagnosed with a “condition”, we are not sick. We are simply the more sensitive of our society. We are the ones who are first affected by the toxins being spewed into our environment. We are the canaries that have been released into the coal mines, except you see us react and you come in anyway.
If you think you’re not being affected, you’re mistaken. We are your warning system. We are (now) where you’ll be at some point in the future. By then I trust that we will have figured out how to cope. We’ll be stronger. We’ll know how to navigate the toxic soup we swim in. Our experience will be your saving grace.
I am telling you this story now because I’ve been making some powerful, positive changes in my life and I feel physically better. Well enough that I’m able to express myself. Well enough that I’m starting to feel angry about it. Angry at the society that created this toxic soup I live in, and which offers no resources to help me cope in it or to deal with the repercussions; angry that I have to fight to convince people that what I’m saying is true; and angry at myself for allowing such mistreatment.
My anger however is softened by a deep sense of gratitude. It is true that I’ve had to figure things out myself. I’ve had to learn through trials and tribulations what will help me feel better and what will make things worse. I’ve had to be my own healer, educator, and counsel. It was not an easy journey, but it has made me stronger and wiser.
There is a story I once heard that keeps playing in my thoughts. It is about a man who came by a butterfly struggling to get out of its cocoon. The man wanted to help the butterfly escape its imprisonment and he cut away enough of the encasement to allow the butterfly to emerge with ease. The butterfly relieved of his burden, didn’t build up the strength in his wings that he needed to be able to fly. Without that ability to lift himself up, he soon died.
There is purpose to our struggles.
I am not the only one going through this. I have discovered that there are others out there like me. More and more each day. We are starting to find each other now. To offer each other support. To heal each other—sometimes in the very simple act of listening and understanding, of no longer feeling alone, of knowing our experience is real and of finally being believed.