Today is my anniversary. It’s not my wedding anniversary, nor is it the anniversary of my birth. It is instead the anniversary of the day that I became ill with what ultimately was diagnosed as CFIDS.
Today marks the end of my eleventh year with the illness, which makes me a veteran by most standards. I became ill at 22, very suddenly, on a Sunday. Today is a Sunday. And I am still ill, although I am no longer in my twenties.
Still ill. For some newly diagnosed, that may seem a terrible thing. And there are certain times of some days where I experience it as a pretty terrible thing. As with all CFIDS patients, I have endured some of the most horrible experiences at the hands of irresponsible ignorant physicians; lost important and valued relationships because of my perceived disability; and watched my body turn from a slender, healthy, and active vessel to an out-of-shape, unwell, and lethargic one. But all told, somehow my optimism and hope have endured, and out of an imposed and confusing hell I have somehow, carved a rewarding successful life. I am living with CFIDS.
On this anniversary, I am taking stock of my life with CFIDS. I am thinking about what has worked for me, what has failed, what has improved, what endures, what is still problematic. I can say this: I can no longer tell if I am really better in a physical sense, or I’ve just learned to cope better. But it doesn’t really matter, for I’ve found a way to survive with this disease, and live a good life.
How have I done this, some might want to know? Well, for me the first, and most enduring lesson, was to come to terms with the fact that a CFIDS explanation and cure does not exist. When I let go of searching for these things, I began to learn how to work within the symptoms. This doesn’t mean I gave up hope – not by any means nor does it mean I’ve “accepted” my disease. I think hope is a fundamental survival tool, and I believe accepting something that causes such pain is, for those of us not quite worthy of sainthood, impossible. What I’m talking about really doesn’t have a word, which is telling in and of itself. The best I’ve come up with is the phrase “being in a relationship with,” meaning that I have an ongoing interaction with my disease.
Some days this means fighting, but mostly it means compromise. This compromise doesn’t always come easily, but it manifests in a variety of ways, including how I eat, sleep, work, love, move, even breathe. Each of these things constantly requires my attention, has demanded years of study, devotion, and thought. I can still find room for improvement in dealing with many of my challenges. Finding the middle ground – the place that’s at some kind of agreement between my wants and my needs – is usually the point where I can cope.
In future months I will use this column to write about some of the various middle grounds, looking closely at issues of nutrition, exercise, work, relationships, and, as always, hope. I am not a scientific expert in any of these things, but I am – as all CFIDS patients are an experiential expert. By default we have become nutritionists, physiologists, vocational, and spiritual advisors. We have learned to live with CFIDS in order to survive, to extract joy out of pain, to enjoy family, friends, music – whatever 1 Is that gets us through.
And on this day of all days, I truly know that I can live with CFIDS.