Explaining the illness to others can be a challenge. For those in your life, it’s important that they be aware of the illness, its ramifications, and what they can do to make your life easier (i.e. don’t wear perfume around you). That being said, don’t push it on them constantly since it will likely turn them off to learning and helping.
There are a few terms for this illness. Multiple Chemical Sensitivity (MCS) continues to be a popular nomenclature. Unfortunately this term has been branded as a quack illness thanks to chemical companies that funded some “interesting” research back many years ago. However, overseas the precise opposite has occurred. In some European countries and Japan, MCS is a recognized medical illness and health benefits are provided for those who have it.
Another medical based term is Toxic Encephalopathy. It should be diagnosed (and was in our case) by a doctor specializing in chemical injury. It’s different than MCS or the other terms because beyond most people’s reactions, there is actual damage being done to the brain. However this term is hard for many to grasp and is used for treatment in the medical setting.
Most commonly, and as you can see throughout this site, I use the terms Chemical Injury or Chemical Sensitivities. These are straightforward and accurate. When describing your illness to others it’s easier to use one of these terms and follow it up with the phrase “severely allergic to chemicals”. While this is actually an inaccurate statement, it’s easy for people to grasp and understand how chemicals can affect you.
Some friends and family won’t believe you’re sick or may think you’re exaggerating. It’s hard for most people to wrap their heads around the fact that common chemicals can actually make someone incredibly ill. Use the peanut analogy with them – if just smelling or eating one peanut can cause a highly allergic person to go into anaphylactic shock and potentially die if not treated immediately, why wouldn’t chemicals potentially have the same effect?
The Bucket Analogy is also a good way to explain the illness. Think of our bodies like a full bucket that is constantly overflowing and doesn’t have the capacity to take in anymore of whatever. In this case it would be chemicals. Normal people’s buckets are constantly in flux – taking in and removing (processing) chemicals – but the chemically sensitive body doesn’t have the capacity to remove the chemicals so everything they take in stays and can’t be processed.
Remember, CS implies an inability to process everyday chemicals, even at extremely low levels that are considered safe by the mainstream. Just like severe allergies, the body is unable to fight the offending substance on its own.
It’s not your job to convince people that you’re sick. It’s hard when people doubt the legitimacy of your illness but you have to let that go. There are always going to be non-believers and that’s okay.