Part One of Four
Guest post by Che Ray
For those of us with EI (environmental illnesses), the holidays are especially brutal. What were once happy times surrounded by family and friends become increasingly isolating experiences. Depending on how bad off we are with things like fragrance sensitivity (which, next to fruit cake is the worst part about inviting Aunt Betty) or severe fatigue (where you just want to curl up into a ball under the dinner table), more and more we are faced with having to choose between trying to brave a family gathering only to end up sick in bed for weeks or convincing ourselves we will just stay home and write that novel.
In response to a heart-felt plea for help from one newly aware Canary who was torn between wanting to accommodate her family and fear of going overboard and getting sick, I wanted to reach out to her and give her some advice I wish someone had told me. This is more or less what I said:
This cluster of conditions that we call EI is an insidious one, for so many reasons. None of which are your fault. And understanding the underlying cruel irony of what is at play will help you really believe that. This is what I think you should keep in mind:
1: It is invisible so we are constantly having to “convince” people of its authenticity.
2: It puts us in the position of having to ask other people to help prevent us from getting sick, in other words, potentially putting them at an imposition which feels very awkward.
3: We long for the lives we had before we got sick. When we were “normal” and could move through the world with any level of anonymity we wanted just like everyone else.
4: We have to announce to the world our personal health information while bracing for the possibility that we will be ridiculed for it.
5: We never know when fragrance is going to jump out and hit us so we often hope for the best and maybe don’t say something as often as we should in the prayer that it won’t happen. But living on this kind of edge all the time is extremely stressful.
6: We feel forced into a position of having to apologize for our very existence on a regular basis.
7: Because they aren’t reacting (or even sensing at all) the same thing we are in the exact same time, physical space, air space, it feels like we are living a parallel reality with the world around us. Like the Matrix, but without Keanu Reeves’ money.
8: We are having to run from and ask other people to refrain from something that often used to be a wonderful thing like the smell of Mommy’s perfume or peppermint candles. It robs us of the experience of our own memories; it corrupts them.
9: It makes us feel less than, and incomplete, while at the same time being saddled with an extra sensory ability.
10: it isolates us from the world experientially, emotionally, and physically.
11: We are on the forefront in a battle with the most powerful entities on the planet (the petroleum and chemical industry, insurance companies, employers, land owners) who are doing everything in their power to mis-educate and hide the facts. This can make our place in the world and what we are up against feel insurmountable.
See Part Two for what I would tell you, after spending the last 8 years going through this personally, with family, in court, with doctors….
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Pingback: How to Survive the Holidays with EI and (Possibly) Not End Up Alone or Wanting to Give Your Family the Boot (Part Four) | Seriously "Sensitive" to Pollution
Hi Linda, I haven’t been ‘on line’ for a while, the EH has been brutal lately : (
I have just read the four parts of this post and once again I feel the need to THANK YOU with all my heart for the effort you make (in spite of the concequences to your own health) with such consideration and caring for others to produce such an inspiring and usefull post for us all ♡♡♡
I will share this with friends and family members to help in their education and understanding of our condition and to remind them that it’s not that we ‘don’t want to do’ certain things or go to events and are ‘just making excuses’, but rather that ‘we can’t’ do these things without suffering the damaging health effects of exposures. I don’t seem to explain myself well enough or maybe some people just have no interest or ‘don’t want to understand’ : (
Thanks for being an angel ♡♡♡
Hi Therese, I’ve been thinking about you lately, and am very glad to hear from you!
I hope things become easier for you soon ♡
I too appreciate your helping educate and support all the Canaries. That is such a great way to describe my experience. My new pulmonologist wants to do testing to rule out pulmonary fibrosis. My cough during exposure is awful. I don’t mind her ruling out things but I don’t see her acceptance of MCS and E I. Years ago one doc ran many allergy tests that mainly came back negative. None of those were for chemicals. Are ther tests for that will help her understand in her own language? I don’t think allergic rhinitis quite covers this category of chronic illness and with a new doc it will be another hardship I must face.
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