I am a zebra. Not a horse, although for years my doctors thought I was. Nope. I’m a zebra. You know what doctors are told in med school; “When you hear hoof beats, think horses, not zebras.” In other words, if something is wrong, don’t think of all the unusual things it might be. It almost always is the obvious one. Well, let me tell you, a zebra’s whuffle is not at all like a horse’s neigh. But a lot of times doctors think it is. For those of us with rare forms of immune deficiency, our doctors slowly learn that with us, they do need to think “zebras.”
Disclosure: I am a perfectionist. I am also, not surprisingly, moderately OCD and have an anxiety disorder. That means I try to control lots of aspects of my life and environment in order to lower my anxiety. Oh, and the little matter of my immune deficiency? That means that there is a huge aspect of my life over which I have very little control. Which drives me crazy. And which is why I sometimes feel not only like a zebra, but a zebra’s child as well; there are times when, just like a child, I have so little control over what happens to me.
Further disclosure: My biggest coping strategy is denial. I’m not kidding. Not watching movies, or reading books or eating chocolate, although those do all have their place in my bag of tricks. But I truly think that if I just ignore a problem, and keep living my life the way I’ve been living it, the problem will go away. Thinking that way is not a little problem, it’s a big problem if you have a Primary Immune Deficiency. Living the way I used to live, with all the activities, working too long and too hard, not enough sleep, etc. only makes me more and more seriously ill. And, unfortunately, my health won’t improve unless I think about it and deal with it, which is the last thing I want to do. Dealing with it is admitting that there is a problem.
So. I have Common Variable Immune Deficiency (CVID), which affects only 1 in 25,000 – 50,000 people, and is life threatening. The gamma globulin treatments that keep me alive involve my getting hooked up to an IV for a day and a half once every three weeks. (I don’t have to spend the night, I just go back the next day.) Now, ask me how I can regularly get those treatments and still be in denial? A day and a half every three weeks????? Well…… ummmm….. That’s a really good question. All I can say is that you have no idea how truly great my powers of denial are. I could probably enter a competition titled something like “How far has denial carried you in your life?” and have a good chance of winning. Or at least making it to the finals.
Unfortunately, as those of you with an immune deficiency know, denial can only carry you so far before you crash and burn. In my case, somewhat spectacularly.