Part Two of Four
Guest post by Che Ray
Overarching rule of thumb:
Talk about MCS/EI/TE/TILT like you are talking about cigarette smoking or HIV exposure. What I mean by this is:
A: It is a given fact that second hand cigarette smoking causes disease.
We didn’t know this for a long time because the tobacco industry didn’t want us to know. So people had to put up with cigarette smoke in their face. Now it is not only not tolerated, it’s illegal to smoke in many places.
Explain to people that the elements in cigarettes that really kill people are often the exact same chemicals used in fragranced products.
I also say this condition is like smoking and HIV in that these diseases, more than others, DEPEND on other people caring about the health of people (like us) as much as they care about themselves.
B: We have NOTHING to apologize for, so DON’T DO IT.
Do not get in the habit of apologizing for your existence. Find a way to briefly educate people without including the words “I’m sorry” or any other language that reflects this.
C: We MUST change the paradigm of this illness being an us and them thing.
The chemicals that are permeating our planet are bad for EVERYONE. Some people just get sick and die, never knowing what killed them.
We happen to have an alarm bell which has been tripped and alerts us to the danger. I tell people this. It freaks them out a little because it gets them thinking, “Wait, I am not irritated by this fragrance right this minute, but I might get cancer and die if I keep using it.” It should freak them out, so go there.
Blind them with science. Because it’s on our side.
D: Instead of feeling bad about asking people to help you not get sick, let them know that they are an important part of helping you to stay well, that they are doing something useful; that they are needed. They are heroes in your book.
While I no longer say “I’m sorry”, I will say “Thank you.” But don’t say thank you with an apologetic tone. Say it with a strength, like, “Thank you! Thank you for being so smart and totally getting it!”
E: We were not living “normal” lives before we got sick. Our bodies were just processing the toxins in a different way. Now that you have this highly sensitive early warning detection system in play, it might just prevent you from getting something even worse later on (if you heed the warning). The world was not normal before, our bodies just had a greater physiological ability to live in denial about it. We were still being exposed to the same crap.
F: I still struggle with not wearing a mask as often as I should or putting up with being in a room with someone longer than I should because of the impulse to accommodate someone else before honoring myself. The times I am doing better at this are when I am focused on what I want to accomplish and saying to myself, “Screw the world and what they think of me in this mask! I have to get ready for my trip which I really want to go on and I’m not going to let myself absorb a bunch of hits between now and then.”
G: The down time when the MCS/EI/TE/TILT or CFS/ME hits, when you HAVE to be in bed, can be a real spirit killer. I have lost so much of my life giving in too much to the down time, when you feel so lousy that you can’t do anything but watch movies or sleep. If I could do something over again, I would say that during the stuck in bed times, I’d try really really hard to not give in to total vegetation. I get severe migraines as well so the thought of trying to do anything during those times, seemed like an impossible idea.
See Part Three for some things I would recommend even when it’s a stuck in bed day…