Words have power, especially names. What I call this disease I struggle with has power. That name, whether it is in my head, in my writing, or in conversation effects how I see my self and how I present my self to the world. Especially when I write, I find that I hesitate with word selection. Do I have a disease, a condition, or an illness? Do I claim ownership as in my health problems? Or distance it with the illness? Or give it the significance I want others to hear with capitalization and acronyms like MCS, TILT, or EI?
If I am worn down from exposure or struggling with GI issues, I find that in my exhaustion I cannot sort through all the vocabulary options and instead fall back on the generic phrase “health issues” to explain my absence from regular activities. WTF? That sounds like an outdated deliberate attempt to talk around an impolite subject, like whispering the word breast cancer. I hate it when I catch myself doing that.
My internal struggle with terminology is reflected in the global one. It is difficult for any system to handle the myriad name possibilities, whether it is a government group that sets standards, or a nonprofit that directs research funding, or an insurance company that needs a code for processing. Unfortunately the most obvious unifying aspect of this disease is how it manifests, which means that the names for the illness are frequently based on symptomatology, like MCS* or total allergy syndrome. Those names at least deliver some connotation; unlike EI, a phrase I occasionally use but which doesn’t really suggest anything specific to the listener. Even worse than the absence of meaning is the wrong meaning. As Laurie Edwards writes in In The Kingdom of the Sick, “One argument patients have is that giving a condition a name based on its symptoms and not its disease process can add to the misconception it is not a true disease.”
There are some subsets of this illness, Gulf War Syndrome, 911 Syndrome, and even the old Sick Building Syndrome, which at least have a specific set of conditions to unify them. This provides easier definition, research, understanding by the public, and recognition within systems. There is something to this classification I think; the patients I have the most in common with actually had the same original insult of heavy metal toxicity as I did. But it does nothing to alert the public to the dangers we promote every day, in every aspect of our lives, not just one specific set of conditions.
We are stuck with a disease name based on symptoms and conditions of onset because there is no consensus on an underlying mechanism. We have decades of research with theories which differ, build on, and overlap with each other but nothing as simple as a single obvious mechanism**. Which means we haven’t done enough research yet. We have a list of acronyms that don’t quite work for us all and we have patients with a list of acronyms that they’ve been diagnosed with. I look forward to the day when there will be enough understanding of this illness that I can use one term and it will feel right to me, it will make myself understood to others, and it will trigger the correct response from a helpful system. Because if all those aspects are working, then there is a good chance we understand the disease well enough to start the work of preventing it.
In the meantime, I have been at this long enough to use the most effective terminology at the right time for the most part. I know which term to use when I am seeing a new physician who has no interest in my full story and doesn’t need to know it, if all I want from them is to rule out cornea damage. I know the most efficient phrase to explain my history and limitations to my child’s new friend’s parents who just invited us over dinner. But what to call my it in my head? We all function better when the outside and inside are, if not in agreement, then not at war.
So here are my semantic resolutions. I don’t want to think of it as my health problems anymore. While they are indeed mine, I have these health problems because we all have created a world where we expose our bodies to more toxins than we can process without damage. I just happen to be in the first wave of people to manifest this condition, but I firmly believe that this is our health problem. I will, however, own the symptoms; my chemical and food sensitivities, my systemic inflammation, and complete lack of intestinal SIgA (sorry if that’s too much information). Those are my problems that I struggle with and I want to emphasize that is my work. I will refer to the syndrome as often as I can with the acronym I prefer TILT, over MCS. When I use Multiple Chemical Sensitivity, I feel the word chemical carries a restrictive connotation and sensitivity has a negative one. But Toxicant Induced Loss of Tolerance emphasizes that I lost something. Every TILTed patient lost something and it will happen to more people every year.
Another Laurie Edwards quote, “Patients don’t want to be reduced to a laundry list of symptoms or a disease label, yet science matters, and the words we choose to describe and categorize illness have enormous reach…Ambiguity is often the enemy of patients.” Clear intentions with my words may be a small step in awareness but it is one I can do, and that is always a good place to start. Besides I don’t like having enemies, even vague ones.
*The following consensus criteria for the diagnosis of MCS were gleaned from the study by Nethercott et al. (funded in part by grants from US NIOSH and US NIEHS):
1. The symptoms are reproducible with [repeated chemical] exposure.
2. The condition is chronic.
3. Low levels of exposure [lower than previously or commonly tolerated] result in manifestations of the syndrome.
4. The symptoms improve or resolve when the incitants are removed.
5. Responses occur to multiple chemically unrelated substances.
6. [Added in 1999]: Symptoms involve multiple organ systems.
**The Chemical Sensitivity Foundation has a recently updated link for peer-reviewed journal articles (not books). Look for authors Bell, Miller, Pall, Sorg, Schnakenberg for articles that really focus on possible mechanisms.