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A Politically Inconvenient Illness USA
Contamination level: Feeling violently sick all the time.
Author: Christi Howarth Created: 6 Mar 2011 Updated: 6 Mar 2011 Viewed: 3903 time(s)
MCS, upper reactive airway disorder, asthma, chemical intolerance, hypersensitive airways disease….so many terms to describe a disabling, politically inconvenient illness.
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I encountered intense burning of my face, neck, eyes, and ears each time I entered my classroom. Created: 6 Mar 2011
A Politically Inconvenient Illness
MCS, upper reactive airway disorder, asthma, chemical intolerance, hypersensitive airways disease….so many terms to describe a disabling, politically inconvenient illness. Before 2004 I had never heard any of these names other than asthma, but later I would have all of them written in some official documents to label my new condition.

After a successful 25 year career of teaching, consulting, mentoring, and writing curriculum with a school district in southern California, in the fall of 2004, upon returning to my teaching post of instructing 204 students a year, I encountered intense burning of my face, neck, eyes, and ears each time I entered my classroom.

By the end of each period of instruction, not only was I burning and my skin was flushed, but I looked out upon a sea of bright red burning faces as well. I had never experienced such intense pain to my body. What was happening to us? My students were putting their heads on their desks in exhaustion, parents were emailing me with complaints that their children had migraines in my room, students were going to the ER after my class, and none of us had a name for these strange new symptoms.

Within two months I could barely open my eyes due to the extreme pain, I was going to bed each evening by six. I started to break out in hives on my chest as I entered my classroom. The books I touched on my desk gave my fingers blisters. The fatigue was overwhelming. I thought it was the end for me. Finally, after hearing the students’ testimonies, my principal moved us all to another building, but for me, being in the room for so many hours a day, it was too late. Five doctors refused me to return to work and yet no one had a precise name for what was happening to my body. I was baffled and in pain.

Then finally, I asked my primary physician, “What is happening to me?” He reluctantly said, “I’m sorry to tell you this, but you have multiple chemical sensitivity.” I had no idea what it was or the implications of this diagnosis, but quickly I learned. It was the end of my lifestyle as I knew it before. The intense burning spread , and not only was I burning in the classroom, but then I began burning in grocery stores, malls, and even began reacting to people’s clothing and their personal care products. I was in a lot of pain every time I encountered a chemical or went into a building with mold problems or water intrusion.

I was referred to a toxicologist who after doing extensive blood work and scans told me I had chemical intolerance, another new name for my condition. He said this label was more politically correct, but he had very few treatments to assist me with this chronic condition. Why was the diagnosis name changing?

Then on to another lung specialist who did the methacholine challenge test in the hospital which almost stopped my breathing entirely. My new diagnosis was then upper reactive airway disease, yet another new term for the same reactivity to chemicals.

When applying for my social security disability I looked over the legal paperwork and the term MCS was nowhere to be found. It seems as if it were a dirty term. My symptoms hadn’t changed or decreased but I was getting the idea quickly that I had a politically inconvenient illness. Why were all these professionals tiptoeing around the original diagnosis of chemical sensitivity? Were they afraid of offending the chemical industry? Did some government entity tell them they were not allowed to use this term? I did not ask for this condition and had a hard time initially comprehending why these professionals were careful not to state this diagnosis in their official documentation. “It is what it is,” I said, “I react to multiple chemicals.” It seemed like a mandate from “above” that would not let the “chemical” term be used.

Since 2004, like many with this condition, I have spent thousands of dollars on treatments not covered by any health care plan. Instead of buying less expensive products to save money, I must buy more expensive products which are chemically free in order to survive. When one is on a disability income, this is extremely difficult. There is no foundation to help the chemically injured community. In fact, some children with MCS have said, “I wish I had cancer because at least then my condition would be recognized. I would have foundational support.” Why must any child wish they had cancer instead of this condition?

The hardest part of this politically inconvenient illness is that me, and my disability community are being denied the very treatments that could help improve our quality of life. I cannot bear to hear that one more person has taken their own life because they cannot afford treatment, or are denied safe housing, or just sit at home because their insurance company will not pay for their treatments, or they have been harassed due to this condition.

I challenge our community to stand up to the discrimination of denials and demand the appropriate health care which is needed to benefit our quality of life. Even with our substantially reduced income, we pay our health care premiums and must be allowed the treatments our physicians prescribe to improve our lives. Our population does not have the same needs of others. Pharmaceuticals just do not work for most of us and we need to let our voices be heard to insurance company managers who are building their third vacation home while we struggle to make ends meet. It is time for them to listen and to act in our favor.

It is time to appeal every future denial as a means to get the message out that the discrimination of our politically inconvenient illness is over. Our disability will not be further oppressed and denied. Every other illness is attended to and so shall ours. None of us asked for this incredible lifestyle change and now is the time to evolve and move forward to demand equal access to care, equal to any and all other disabilities.
http://www.csn-deutschland.de/blog/en/a-politically-inconvenient-illness/
Sent to MV by Sylvie
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