Wednesday, June 2, 2010
I am sick.
I have been sick for a long time.
Long enough, in fact, that I cannot recall when it began or what it felt like to be well. I only remember when I first knew something was wrong. It was the Summer of 2002. I was just 20 years old.
Over the past 8 years, I have been seen by countless doctors and specialists. I have forgotten most of their names and many of their faces. What I have not forgotten is the experience of being poked and prodded, sometimes disbelieved, often misunderstood, and always sent home empty handed.
While my medical record is full of diagnoses, most of them reflect symptomatology rather than causality. A few of them are simply the scientific equivalent of "we don't know what's wrong with you." And that, I suppose, is the crux of the matter. I don't know what's wrong. They don't know what's wrong. No one knows what's wrong. But something is decidedly wrong.
The range of symptoms I experience on a daily basis is extensive, growing more so with each passing year. Sometimes I am convinced that the list of symptoms I don't have is shorter than the list of those I do. Most of them, taken individually, are simply frustrating, embarrassing, or painful—sometimes all three. When experienced together, these symptoms make life "interesting," to say the least.
And yet, I would gladly embrace every last one of them if I could only be free from what has permeated every aspect of my life. In medical speak, it's called "chronic fatigue." In layman's terms, it means that I exist in a perpetual state of utter and complete exhaustion. On a scale of 1-10, with 1 being "I'm just a tiny bit tired" and 10 being "I'm so exhausted I can't move," my fatigue varies between 8 and 10 during the course of any given day. Certain things make it worse, of course, but nothing makes it better. And in recent months, I find I am running closer to 10 more often than not.
Out of necessity, I have become an expert in survival mode. After all, I have had 8 years to perfect my skills. In fact, I have become so talented at looking and, for the most part, acting normal that the majority of people don't even know I am sick. Even those who do know sometimes forget that I am not like them, that I cannot do the things a healthy 28-year-old woman can do.
I admit that I have often wished for the chance to exchange my illness for something more obvious and tangible, something I would never have to remind people of because it would be right there in the open for all the world to see. But that isn't really what I want at all. I don't want the whole world to know I am sick. I just want the people I love to know I am sick.
It's not that I am looking for sympathy or even understanding. Those things are great, but they are nothing in comparison to being known. As much as I despise this monster that has stolen my strength, I can't deny that it's a huge part of who I am now. Still, it isn't an easy thing to announce in any conversation: Hi. My name is Courtney, and I have chronic illness.
The response to such a revelation varies widely. Some people express deep compassion for my experience. Some people disbelieve that I am truly sick, choosing instead to declare me "weak" in mind and body. Some people change the subject and never bring it up again, unable to comprehend the foreign language of illness.
Every time I expose this part of myself, I am risking judgment, rejection, misunderstanding, and invalidation. But I keep doing it, one conversation at a time, because I am determined to bring the real me into every relationship I have. I want to be known for who I am—the good and the bad, the easy and the hard, the strength and the weakness. Because I've learned from experience that this knowing and being known will lead to the kind of love and intimacy that makes this life worth living.
So here goes nothing—and everything:
Hi. My name is Courtney, and I have chronic illness.