It was almost a year and a half, between the time I was hospitalized and the time I received a diagnosis. My doctor, a world-renowned rheumatologist, arranged an early morning appointment so I could still make it to work on time. I took that as a good sign. I didn’t think a doctor would deliver terrible news first thing in the morning, knowing full well that in less than an hour, I’d be expected to teach fourth grade.
It was the first time we had been invited into a doctor’s office. All my other appointments always took place in an exam room. This time, I sat in a chair, fully dressed, and held Paul’s hand. We looked around and noticed the pictures of the doctor’s grandchildren. We whispered comments of admiration for the many framed awards, declarations, certificates, and diplomas hanging on the walls. We noticed the shelves of books -- books written by my doctor.
Finally, we were in the hands of an expert. Someone who knew what he was doing, and I trusted he would be able to help me.
Dr. W. told me the official name for my condition: Undifferentiated Connective Tissue Disease. UCTD. He told me it was a rare condition and explained it as an autoimmune disease with over-lapping symptoms of lupus, rheumatoid arthritis, and myositis. I didn’t have any of those diseases, but symptoms of each, which made my condition more difficult to diagnosis and to treat. He jokingly said I could call it “The Kennar.” It was rare, so I may as well put my own name on it.
At the time, I joked that I was always “daring to be different,” and apparently, my illness was no exception. Now I realize that when it comes to medical issues, rare isn’t always a good thing. People don’t know what I have. They haven’t heard of it. It isn’t named after a famous baseball player, it doesn’t have its own awareness month or ribbon, and it doesn’t have its own walk for the cure.
A few years after the fact, and I realize how naive I was at the time. I received a diagnosis and assumed I’d learn to live with the condition. I’d make a few adjustments, take some medication, and get better. I thought, and actually told others, that my condition was something along the lines of asthma (which I’ve lived with since childhood)or diabetes; it would be there and I would have to find ways to manage it. The possibilities leading up to the diagnosis were so much worse: cancer, leukemia, multiple sclerosis. I would handle this.
Little did I know that living with and managing my disease would result in me leaving my teaching career. At the time, I really didn’t think my life would change. But it has, and continues to change.
I was diagnosed almost two years ago. And yet, this whole medical condition (notice how I shy away from using the word “disease”) still feels so new. I still don’t feel like I know how to live with a chronic medical condition.
It’s not just my body that has to change, it’s my mind. I have to keep changing the way I think about myself, the way I tend to push myself too hard. For as much as I have tried to deny it, I am not completely the same person I was before the diagnosis. Not necessarily “worse,” just not the same. And, I’m finally realizing, I won’t ever be the same.