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Living With MCS: Reflections

Symptoms    Family Living    The Life I Lost    Coping    Being Accommodated    Reflections   


It is not just my job that Iím not showing up at. Iíve been missing out on most of life. My world has become extremely small and heavy with loss after loss. It is lonely, but with loneliness I have the best health.

Many expect that I should simply not even try to venture out. Ignorance of environmental illness in the general public is rampant. For example, I tried to attend an outdoor folk festival last summer. I went alone in case it didnít work out, but i was able to stay clear of triggers but for lining up for food. While I lined up for refreshments someone asked "why do you have that on?" (my respirator). I told her about how fragrance exposures of sun block, perfume, fabric softeners, shampoo, etc., cause me breathing distress. She said "Then why did you come?"

The respirator cannot protect against harsh words.

There was a woman in the same line in a wheelchair. To me, it would have been rude to ask why she had come. After all wasn't she taking up the space of two people in the line. Even though she couldn't reach the counter once at the front of the line, I know that the woman who addressed me wouldn't think of questioning her desicion to come.

Another example of ignorance in the general public involves shopping at Gander Mountain in Middletown to purchase waterproof boots. While I was there, I was asked to leave the store by the store manager who saw my respirator and said I was ďscaring the customersĒ. The reason I was at Gander Mountain was to purchase boots; so indeed I myself was a customer. My doctors told me I had limited vitamin D, and I was preparing to be outside more in winter. The manager's first questions was, "Do you have to wear that thing?" (the respirator). I told him that if I didn't have to, I most certainly wouldn't, explaining that it can be quite hot and uncomfortable, and breathing can be strained. Plus, I often experience the frustration of not being understood when speaking. If it were not medically necessary, I certainly would not be in public wearing one.

Because of this incident John made up preprinted slips explaining my illness with websites for further information on mulitple chemical senstivities. I give these out to cashiers or people in the check out line. Without it many remain uneducated about the condition and feel unsure if they are at risk from an infection from me somehow. I keep these slips in my purse in zip lock snack bags. I keep money that way too, for money is extremely fragrant. Many are thankful for the information and say they have actually experienced similar reactions, just not to my degree. ďOh, being around perfume does give me headaches .. wow.. never knew they can be neurotoxic...thanks.Ē He has helped me now reach even more of the public by making this website.

Success stories involve seeing other friends with some degree of chemical intolerance, who already live chemical free. We have dined a couple of times successfully at a restaurant, getting permission to come early, eliminating places with air fresheners or scented candles and arriving before regular hours, or sitting very far from anyone. I have traveled to tented areas with other MCS sufferers and can experience good days there. If I have had a bad exposure when driving I put on my car filter and shut off the outside air. This usually stabilized me again and I can continue driving.

Despite having some socializing successes, I very much miss my partner who moved out to minimize my exposures. Occasionally he joins me here for dinner, but most nights he returns to his apartment to sleep. This is a lonely change. I have a handful of friends left at this point, and only minimal family activities when they take care to plan for fragrance free rendezvous.

I also ached for the difficult teen life my third child had to live.

My life has radically changed. Iíve become another one of this centuryís canaries. We are so squirreled away for our own health needs it is difficult to reach out to others who are not aware of the increasing toxicity of our planet. I react strongly to chemicals that other people do not see or feel themselves. Others have not experienced anything similar. Few understand the biology behind this threat.

Without education, many may label those suffering as the problem, rather than the toxins that cause our symptoms. It is actually strange to me that anyone can tolerate these poisons.

This might sound rude, but I wish that this could afflict everyone for just one day so they can feel how difficult and challenging life becomes. Simple things are no longer simple, and many pleasurable activities simply canít be any longer.

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