Ay, there's the rub!

If you have been diagnosed with Lyme Disease, there's an excellent chance the journey to diagnosis was a long and frustrating one. I've heard from more than a few people that the day they were finally diagnosed was one of the happiest days of their lives! I know I cried tears of joy when I was diagnosed and actually felt validated by a medical professional. Too often we have had our symptoms dismissed as psychosomatic. We have been told, over and over and over, that all our lab tests are normal so there can't possibly be anything physically wrong; it must be psychological, here's a referral to a shrink. In fact, we may have come to believe the things our doctors said. We may have begun to question our own sanity. But ultimately, some inner knowledge propelled us forward until we had a real diagnosis.

Though I received my diagnosis over a year ago and am responding to treatment, there's still some part of me that, on occasion, thinks, "Maybe it IS in your head." How could that be? How could I be seeing a world-renowned specialist, be responding to treatment, and still have that question pop up in my head? Well, it's because Lyme Disease is a tricky thing: you never know what you'll feel like from one day to the next. Often, I don't know how I'll feel from one hour to the next. In fact, I'll have days when I feel almost NORMAL (though my version of "normal" may be a far cry from yours). Those days are fantastic and I soak them up, breathe them in, write them down, and generally bask in the glory of feeling Human. However, they're often what catalyze those niggling doubts in the back of my mind. Especially if I have a slew of Good Days in a row. Fortunately (or unfortunately, depending on how you look at it) those doubts stop in their tracks when the Good Days end and I'm holed up in bed, recuperating from the exertion of all the activities I packed into those glorious days!

If this reality is hard for me to swallow, I can't imagine what the people around me must think! Well, actually, I know what they think because we talk about it, but do you see where I'm going with this? It's hard for people to grasp, especially if they're not going through it themselves. But that's where communication and education are KEY. I may have explained the unpredictable nature of this illness to my mother ten, twenty, one-hundred times, and may have to do so again, but each time it helps. Each time she understands a bit more. And when I share with her my own frustration and confoundment at these things that are difficult to grasp from the outside, she sees how we're in similar positions, puzzling over the mind-bending nature of this illness.

In the end, I can only accept what is and appreciate the good days while learning to thrive despite (or because of?) the bad ones. Illness is a bitch of a teacher, but if you're open to it, you'll be amazed at the opportunities it offers for growth (but that is a subject for a different post).