MCS: a real disease

MCS affects millions of Americans with debilitating health effects. Just because you don’t understand something doesn’t mean it’s not real.

Remember, just because you can’t fully understand something doesn’t mean it doesn’t exist. If someone mentions you that you have an environmental illness, sick building syndrome, multiple chemical sensitivity, or mold poisoning, take it seriously. Most of those who suffer from these diseases are already reluctant to talk about it because people often look at us as if we have a large spot on our forehead. We are surely making a big fuss over some little allergy! Could not be farther from the truth.

MCS is recognized by the Social Security Administration, the Americans with Disabilities Act, EPA, and the Dept. of Housing and Urban Development and other agencies. More than 36.5 million Americans are chemically sensitive, and as a result, more than 5.2 million are at risk of losing their jobs. However, this devastating disease is little known or accepted in the real world.

It is difficult to explain this affliction in a way that others can really understand how serious it is. It is chronic and can be life threatening. We have to be very aware of our surroundings and we need people to respect our disability as if we had any other illness. We are very real people with a very REAL illness. Most of us end up with MCS, Multiple Chemical Sensitivity, as a result of a single exposure to a highly toxic chemical or chronic long-term exposure. For example, I have a good friend with mcs due to an exposure to toulene. However, in our case, we were chronically exposed to numerous dangerous molds and mycotoxins, trichothecene, and aflatoxins for 18 months.

As we inhale, absorb, and ingest these poisons, our entire body is affected. Our immune system breaks down, our cells are damaged, and we have multiple organ damage. At this time, we do not know of any cure. The effects of MCS are never identical in two people. Our genetics and our bodies are all different. There is no exact pattern of symptoms, as we are all made uniquely. Additionally, our exposure levels, types, and durations vary.

My doctor said that mcs is well recognized in the environmental community as the spread phenomenon. The initial chemical triggers a biological reaction mechanism that causes the body to react to a wide range of substances that never seemed to bother us before. These can be air fresheners, pesticides, cleaning products, perfumes, and many other things. Sometimes we cannot predict how we will react to what. Often we don’t even know what triggered the reaction.

We often seem to look perfectly normal. We are often told, “but you don’t look sick!” People, often even family and friends, feel that our symptoms are greatly exaggerated. Sometimes we get an immediate reaction. Other times we seem to have a delayed reaction to an exposure. It is very frustrating and difficult to handle.

What others might perceive as minor exposure to inks, paints, smoke, perfumes, carpet cleaners, exhaust fumes, electric fields, electromagnetic fields, and other agents can rob your entire quality of life for days or weeks. We can even lose our lives! Obvious and immediate reactions can be headache, nausea, pierced pupils, seizures, muscle pain, mental confusion, slurred speech, loss of voice, and lack of coordination. Late reactions can include long-term neurological deterioration, respiratory dysfunction, bloodshot eyes, choking, insomnia, and severe chest pain, among other things.

With very few doctors understanding this disease and many even denying its existence, they often try to treat the symptoms with antidotes that can further damage our immune systems and do us no good. So the cycle continues. Our body is getting weaker and weaker.

We get to where ever smaller exposures are needed to provoke an adverse reaction. We become even more hypersensitive. It seems that wherever we go something makes us sick. We can be very careful and still not have control over some situations we find ourselves in.

We remain in a state of confusion. One day we may seem half normal, then out of nowhere we have a severe reaction. It was not our choice to have this disease and we fully understand that it is difficult for others to understand. We couldn’t even understand it ourselves until we felt it happen over and over again. Many of us had no idea what was happening to us. Our sense of smell is so keen. All we ask is that you show us the same respect that you would show others who are disabled or chronically ill.

If we tell you that certain products and chemicals bother us, know that we have already seen what these toxins do to us. We never forget the pain inflicted by various chemicals, molds, volatile organic compounds, and other things that we react to.

We are being honest with you. We really can’t tolerate certain things! If you care about us, take it seriously! Somehow you may think that if you tell us you’re not wearing scented perfume or hide the fact that Pest Control just sprayed your house with pesticides, we’ll probably be fine. It doesn’t work that way. It is not the smell that makes us sick. It is the biological action of chemicals in a now sensitized brain and body.

You are really playing with our life when you do not try to avoid the use of these products around us. We know that the world is not going to change for us. However, we do not want to live in a bubble. We want to be close to the people we love. A life without family and friends feels like a mere existence that becomes very empty and lonely. If you really care, consider how serious this health issue is and do what you can to help us deal with an already difficult condition.