Chemical sensitivities and allergies are crazy making for me because I have an ailment with no visible origin. I regularly thought I was nuts during the four and a half months between onset of the rash and the diagnosis. I still think that way at times. How can something I can’t see, but can touch one day without a reaction and touch the next day cause a major reaction?

In an effort to find sympathy I reached out too often. I say too often because if I had it to do over I would have been more selective and talked only to the people I knew would support me. Others responded with an implication it was all in my head and/or it wasn’t that bad. A head nod, an eyebrow lift, or tone of voice used with children often drove their attitude about this home. They said it was probably stress, depression, and maybe even attention seeking. That attitude just added to the frustration. Did “all in my head” mean I’d somehow created a fake disease?

These “arm chair physicians” implied all I had to do was get my head on straight and the rash would clear up. Often the feedback was not asked for, occasionally coming from someone near that was not part of the conversation. I too was guilty of that behavior in the past. I was guilty of dismissing other peoples physical issues as no big deal. I realized I did it because I didn’t know how to respond, or didn’t know how to deal with the emotion coming at me. I felt the need to distance myself and ignore what they said to me.

Our society is quick to tell people it’s all in their head when we can’t explain what they are talking about. For example a UFO sighting – okay that one might be pushing the edge a bit, but we don’t know what we don’t know and this universe is pretty darn big, so maybe? We don’t like not having a concrete explanation for things so we decide the person is making it up. “He’s crazy” is a common response when something doesn’t fit our reality. Doing that to someone is such a disservice and sometimes mean.

Doing this research I found things imbedded in the definitions that indicated the ‘Its all in your head” connection. As part of the WebMD definition it said, ” It’s possible that conditions such as depression and anxiety play a role, too.” If depression and anxiety don’t play a roll in the beginning of one of these events in a person’s life it sure will as time goes on.

Bravely I ventured into the Quackwatch site to see what the opposition to chemical sensitivity and allergy had to say. What Stephen Barrett, M.D. has to say stung. “Multiple chemical sensitivity is not a legitimate diagnosis. Instead of testing their claims with well-designed research, its advocates are promoting them through publications, talk shows, support groups, lawsuits, and political maneuvering…Well-designed investigations suggest that most of them have a psychosomatic disorder in which they develop multiple symptoms in response to stress.”

Based on what I have experience, I am sad to say, he is not alone in that belief and some of it is true. It bothers me that western medicine is so attached to scientific research. I get they want to be sure people don’t get hurt, but some of us get hurt as they toss us aside and refuse to consider other options. The truth in what Dr. Barrett says makes it emotionally more challenging to move forward.

Iris R. Bell, MD, PhD, in the Psychiatric Times offers these statistics:

• “Sixty percent of solvent-exposed workers reported CI [Chemical Intolerance]…

• Up to half of patients with chronic fatigue syndrome (CFS) and fibromyalgia (FM)…as well as a subset of Gulf War veterans…present with CI.

• Numerous surveys show that mild CI is a symptom in 15% to 30% of the population…• The demographics of CI suggest that the majority with either MCS or subclinical presentations are women (80%)…”She goes on to say:

• about 60% of people, at the start of their symptoms, can identify a big exposure to chemicals.

• 40% of people have no idea what started the symptoms. “Patients without an identified initiating chemical exposure have higher rates of lifetime psychopathology…”

Dr. Bell states, “Other studies have found that at least 25% of MCS patients have no current psychiatric diagnosis.” Yeah, that’s me. Unless you count the fact that I am on an antidepressant. She goes on to say that even if there is a psychiatric intervention for a symptom such as depression or anxiety the chemical sensitivity is not resolved. So fixing the head doesn’t fix the issue.

Researching this subject is helping me get clearer, but along with so many others, I find myself in the middle of a mucky swirling medical debate. An article in Newsweek Health, What is MCS? Multiple Chemical Sensitivity ‘Affects millions of Americans,’ but it isn’t a real illness by Kashmira Gander demonstrates that. “MCS is a serious and potentially disabling disease that is widespread and increasing in the US population,” Professor Steinemann said in a statement. “People with MCS are like human canaries. They react earlier and more severely to chemical pollutants, even at low levels,” I thought that sounded pretty clear, but it was followed by “A 2017 study by the West Virginia University School of Medicine published in the Journal of Occupational and Environmental Medicine was the latest to conclude there is no evidence to prove that MCS patients are different from anyone else. ‘No consistent physical findings or laboratory abnormalities have yet been found to differentiate MCS patients from the remainder of the population.’” Do you feel your head spinning yet? I do.

The Johns Hopkins Medicine Health Library  sums the debate up rather well. “Exposure to certain chemicals may cause reactions similar to those experienced with allergies…At this time, it is a controversial issue as to whether it is a clinical diagnosis or not. Many in the medical community lean towards these symptoms being physical manifestations of psychiatric illness rather than a primary medical illness. While others in the medical community along with organizations agree that multiple chemical sensitivity is a negative physical reaction to certain chemicals. There is debate as to whether multiple chemical sensitivity should be classified and diagnosed as an illness.”

The term “fake disease” kept bugging me. So I looked into what the medical field had to say about it and turned to the Science Based Medicine site. “A “fake disease” doesn’t mean a patient’s symptoms aren’t real, or that they’re not suffering. Patients aren’t “faking” their symptoms. A “fake disease” means that the difficult work confirming the relationship between specific symptoms and an objective diagnosis is lacking…A real disease can be proven false or ruled out… A recent series of articles in the medical journal Canadian Family Physician make the case for the existence of “multiple chemical sensitivity”, also known as “idiopathic environmental intolerance” (MCS/IEI), going so far as to call it a pandemic.” That tells me it is not all in our heads and it is affecting people in pandemic proportions – meaning it is affecting people over the hole country or the whole world. Wow, the club is bigger than I thought. That is depressing.

When it comes to chemical issues in the body, the information on the Science Based Medicine site went on to say: “…day-to-day exposures are now bioaccumulating in people and causing a multitude of health conditions. To facilitate convenience, comfort, safety, and efficiency, there has been the manufacture and release of many thousands of untested synthetic chemicals over the past few decades… Furthermore, the emerging field of nanotoxicology, a new discipline exploring the potential biochemical havoc resulting from exposure to some nanoparticles…has served to bring further attention to the expanding realm of potential toxicants. But just as the exposure problem from cigarettes…was ignored for many years, the current exposure problem from innumerable domestic and occupational sources is also being ignored by many clinicians despite irrefutable and extensive evidence.”

We do like to ignore things that we don’t know what to do with. Add to that, “its all in their head” and we create a dangerous situation. It seems the more mysterious a subject the quicker we go that direction.

Perhaps one of the keys to figuring this all out is found in Sherry A. Rogers, M.D. book
Chemical Sensitivity: Environmental diseases and pollutants-how they hurt us, how to deal with them,* “It [chemical sensitivity] can produce any symptom, but the most common target organ is the brain…A person’s mood swings, can vary from day to day with exposure…For example, many xenobiotic, like trichloroethylene, if blocked from the normal phase I pathway, will form a secondary metabolite: chloral hydrate (the so-called “Mickey Finn” or knock-out drops.) This explains symptoms such as the “brain fog” or the spacey, dopey, and dizzy behavior and inability to concentrate that wax and wane so prevalently.” (p. 15) Furthermore, some xenobiotics can alter the blood-brain barrier, changing the penetration of other xenobiotics and nutrients into the brain (Halsetad 1989)” (p. 16)” In short chemicals affect how the brain functions and how our body processes or eliminates harmful chemicals. Those chemicals cause chemical symptoms while also causing physiological symptoms. Is this one of those chicken and egg dilemmas? Bottom line is we are not just making it up.

I find an underlying contradictory message in all of this. The medical profession is saying this is a physiological issue, which indicates the brain has the ability to make changes in the physical body, like a rash or headaches and a multitude of other issues chemical sensitivities and allergies produce. Simply put, they are saying we have the creative mental powers to make ourselves sick. On the other hand, the medical profession also indicates the mind body connection is not valid. Meaning the mind does not play that big a role in the healing of the body. (Gratefully this is changing) Healing a body requires outside intervention. Simply put, we have no mental control of the healing of our body. Those two ideas are totally contradictory and deeply felt by patients.

So this is not all in our heads and it is not a fake disease. Education seems to be the key to helping others truly understand it is not “all in our heads.” Connecting with others during such a stressful time and arming ourselves with information will break the isolation, desperation and crazy thinking that makes the situation worse. I press on searching for information so I am empowered to fight for what I need to deal with this. Fellow club members, we are NOT crazy.

 

* Chemical Sensitivity; Environmental Diseases and Pollutants-how they hurt us, how to deal with them, by Sherry A, Rogers, M.D., A Keats Good Health Guide, Keats Publishing