KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be splayed or neutered or sent to Limbo.
Multiple Chemical Sensitivity (MCS) is a syndrome where the body responds adversely to household/industrial chemicals, food additives, and man made environmental toxins. The onset begins with a chemical injury -- after which the immune system chooses to respond to fight off that chemical as if it's an allergen. The immune system tends to generalize this response, and soon it thinks it's allergic to all sorts of chemicals.
Dry cleaning fluid, laundry detergent, new car smell, new carpeting, new clothing, chlorine bleach, chlorinated pools and hot tubs, ammonia, just about any organic solvent used to clean, hospital disinfectants, adhesive used in construction, treated lumber, paint, solvent, chemical fragrance -- shampoo, perfume, air freshener, soaps -- all the stuff you encounter every day contains industrial chemicals. The list is long.
There was a time when I was really sick. I got bronchitis and pneumonia at the drop of a hat. I had severe sinus infections, and debilitating migraines. I was sickest back in the 1990's, before anyone had a name for what was wrong with me -- so doctors treated my ailments separately. I had sinus surgery four times. I got virulent bacterial infections in my sinuses and lungs, and took enough antibiotics to choke a horse. My eyes would turn black and blue, and even pussed a little (when that happens there is a danger of getting encephalitis.) I was developing allergies to mold, dust, flowers, cats, dogs -- pretty much the regular things I encountered by walking through life every day.
If I inhaled an offending chemical, my sinuses and bronchi would become inflammed -- sometimes so much that they bled. The irritated tissue would often become infected, so I'd get bronchitis or sinusitis. Sometimes I'd get some pneumonia. Or I would get a migraine. Or I'd get all of the above. My environment was slowly killing me.
MCS as a disability.
I am not disabled by MCS, as I am more healthy now. It was lucky in finding work that didn't expose me to a lot of toxins that made me sick. For some, though, this syndrome is absolutely crippling. Try once to go through a day without exposing yourself to an industrial chemical. If you can't do that, try to be aware of the chemicals you encounter. Because most things are chemically treated, this is harder than it seems at first glance. You can't ride a bus, sleep in a hotel, or walk into a building with new carpeting. You can't go to most stores, period. You probably can't walk into the building where you work. You might not be able to walk through your house.
I have a friend with severe MCS, who had to isolate herself for about three years. Happily, she didn't lose her job, because could telecommute/teleconference. She also had an understanding boss. When I visited her back in the day, I washed my clothes in baking soda, and I washed my body and hair in the same stuff she used to wash herself. Exposure to laundry detergent or shampoo fragrance sometimes set her back for days.
MCS isn't well recognized as a syndrome in conventional medical circles, although some of its effects are known -- food additives trigger migranes, for example. Its effects are real, though. Unfortunately, it is usually easier to file a disability claim with a psychatric diagnosis. The mainstream medical academies are slowly recognizing MCS as a syndrome, though. The AMA tepidly said that the "current consensus" on MCS is that "complaints should not be dismissed as psychogenic, and a thorough workup is essential."
When my migranes went away, my other symptoms subsided, too.
My migraines were interesting, because my primary symptoms were visual. I would get sick with the headache and nausea, but I would always start out having ocular migraine patterns which are little hallucinations in the peripheral vision or major visual disturbances (see here also,) and that would be my primary symptom through the headache episode. Often, I would lose a huge section from my field of vision, and I'd just have to wait for it subside.
It wasn't until 1996 or 1997 when my mother in law suggested I look for migraine triggers that it all started to make sense. My mother in law was a neurologist -- a particularly talented diagnostician. It happened that she thought migranes were among the most fascinating things in the world, and she was a nationally respected expert in diagnosing and treating them.
She told me to pay attention to what I ate and drank before I got a headache. We kept track for a couple of months, and soon I had a list of food additives that triggered migraines without fail. MSG, nitrites, nitrates, a couple of Tai spices, and some preservatives with three inch long names showed up immediately. As time went on, I refined the list, and it was clear what was making me sick.
I changed my diet and removed as many chemicals from my life as possible. Some time went by when I realized that I hadn't had a migraine in a while. Now, I rarely get them -- maybe once or twice a year. It usually turns out that I've accidentally eaten one of the food additives I try to avoid.
Surprisingly, when I stopped exposing myself to chemicals, I stopped having bronchitis and sinus infections, also.
Now, I have a list of chemicals I avoid, but it's so incorporated into my lifestyle that it is no trouble for me. I can generally walk into a building and not get sick, now, and I can walk down the laundry detergent aisle in a grocery store if I move quickly. I watch my younger swim in a chlorinated pool. Ten years ago, I could do none of those things.
It is possible to recover from MCS. It takes a little discipline and a lot of time, but it is possible. In the meantime, though, it is profoundly disabling for people who are forced into toxic environments.
Avoiding unnecessary chemicals is good for everyone.
I once wrote a diary about natural cleaning methods for the simple living series ECSTASY. If you're interested in avoiding household chemicals, it contains information about using lemon juice, vinegar, etc. to clean your home you can start here. Even if you're not worried about MCS, though, do keep in mind:
Most "freshening" chemicals contain VOC's that cause respiratory problems, and chlorine is a menace to health and environment. The truth is that most companies don't have to disclose the chemicals they use in the cleaning products they sell. And there are a lot of harmful toxins in the products we think make us clean.