I will have had MCS for twenty two years coming up this spring. I spent the first three of those years living life as I did before just waiting for things to get better, they didn’t. After countless doctor visits and medical tests that all said the same thing (that I was perfectly healthy) I knew something needed to change. Why? The moment to moment reality of my health was drastically different then what the doctors were saying. As I watched virtually everything I thought I needed to live a good life fall away, the realization came crashing down on me that the traditional ways of getting over an illness, such as going to the doctor and taking a pill, were not going to help this time. If I was to get better is was going to be my responsibility and no one else’s. 

This realization started a twelve plus year period of doing everything I could think of to get better: quitting drinking, quitting smoking, practicing Zen meditation, completely changing the way I ate, changing what I wore, changing where I lived, reading mountains of books, seeing Homeopaths, seeing Naturopaths, seeing a Chiropractor, seeing Acupuncturists, etc… Some of this effort seemed to pay off immediately, some paid off over time and to be honest a portion of the effort appeared to not work at all. But one thing was certain, I was getting better although not always on the time frame I wanted to heal. Much of the time it was a process of 3 steps forward and two steps back. But there was a undeniable forward movement in my health. Sometimes I look back on the years between ’93 and ’05 with amazement; astonished at the consistent and varied effort I was willing to put in to reclaim my health. Over the last seven or so years that effort has paid off in the form of days, weeks and even months that have been almost totally MCS reaction free. 

A few years into feeling pretty good most of the time I decided to start to write about my experiences around MCS, and begin to outline the path that I took to get better. Chronicling what I had gone through with the hope of assisting others who have MCS get better. It took me over 15 years before I started to have consistent good days after the onset of MCS; I hopped that if I wrote about my experiences then I thought it might help others to make their own recovery in considerably less time. I hoped that I would get responses such as, “Thank you for your writings. What you wrote got me thinking and I had has these results…”. But the more I put myself out there (in my blog and other forums) the responses I got were more along the lines of, “Oh… if you are doing this well now you must not have had a mild case of MCS”… What? Did you not read the part where I dropped out of collage only to be intellectually challenges by being a bus boy. Or, “You couldn’t possibly understand, you can now leave your house without being made very sick”… But? “Did you miss that part where I had years of chronic fatigue and working for more than about twenty to twenty five hours a week was extremely difficult?” And… “If you can achieve the things you now say you do you couldn’t possibly understand the mental confusion I feel on a daily basis.” …? Etc… I had much to my surprise been drawn into an occasional game of each of us pulling out our illnesses and comparing their relative prowess’s.

I was amazed at these responses. I knew that each of us with MCS is a little different in what we react to and what symptoms we suffer. I also knew that no two of us will have the same path to healing. I knew no one would take exactly the path that I took, but I has sincerely hoped that I might help point the way to other peoples personal course of getting better. I hoped that others might find inspiration in what I had gone through and what I had done. I was amazed that many other vocal MCSr’s were seemingly more happy pointing out why getting better could not be done then trying to find their own journey to health. I could not even imagine staying as sick as I had once been. On numerous occasions, when things were at their worst, I earnestly offered up the prayer, “God, heal me or kill me; but please don’t let me stay here any longer.” Being stuck was intolerable, my soul screamed for movement; an end to the seemingly unending pain. But during this entire time it never occurred to me to sit around and tell someone who was making a sincere effort to help me that I was not able to be helped. 

Now don’t get me wrong; I would love to say that I was always looking toward a brighter future; that I have never gotten discouraged and that I have never watched myself slip into occasional prolonged depressions. After all, I am only human and humans have a finite amount of energy to put into any endeavor. And those of us with MCS all too often have a diminished amount of energy compared to our healthier fellows. But even in the worst of times I still knew I would not be stuck there forever; the times in question were really just a rest before a new attempt to push forward. There are times to give into exhaustion and dismay; after all a natural part of the healing process is the occasional slide into despair. As far as the research I’ve done as well as my own experience I have come to believe that these emotions are there to encourage us in to times of inaction. Times that are needed for rest and recovery on our path forward. 

To get stuck in these periods of despair and depression can be, at times, a seductive trap. If we are sick for a prolonged period we can, in a visceral way ,forget what it was like to be fully healthy. What we view as normal can become our illness, and not our health. In short our Comfort Zone can become our new lowered health, and getting well can cause us anxiety as we move out of our new, lowered Comfort Zone to greater health and thriving. One of the most insidious parts about being ill can be that, over time, we may actually begin to identify with our illness. We begin to see ourselves as having become one with being sick and not as seeing ourselves as a person who just happens to be sick at this time. And we as humans tend to be very protective of our self views. If we identify with being sick, we may start to wonder… Who would I be if I got well? Would I lose my support group? What kind of person would I be if I got healthy and abandoned others who are ill who need me? Another trap of being ill can be getting to play the victim role. The seductive part of being a victim is that as long as we are a victim we don’t really have to take full responsibility for our lives. As long as we don’t have to take responsibility we can justify how being sick is not our fault and getting well is the responsibility of someone or something else. 

If we really desire to thrive and regain our health, we can’t get too comfortable, we can’t identify with being sick, and we most certainly don’t get to play the victim. We need to be consistently focused on how we can get better, what is the next thing to try? Yes, others will come along and cause us to have MCS reactions, but what will we do about that? Will we develop strategies that move us forward or will we identify ourselves as the victim and remain stuck? In the end each of us as individuals are the only ones responsible for getting better. If you believe that you are your illness, that others must change for you to get better, or that there is no way out from your present suffering then you will see countless examples of how you are correct in these assumptions. Are willing to do whatever it may take to not be stuck? If you are, then I guarantee that you will see more opportunities to get well then you may have expected and over time this willingness to get better will pay off in better health. Either way you get to be right. So I ask you, which would you rather be right about?