When living with a chronic or terminal disease you have to talk about it a lot! I lived at the doctor’s office, I lived in hospitals, the dialogue was always about my disease. That eventually bled into all of my conversations with family, friends, people I had just met, etc. Two things happen, in my opinion, you get so used to talking about your disease that it just becomes natural to talk about it, and you become addicted. Just as someone gets addicted to a drug, or trauma, you become addicted to your “disease.” My disease, Lupus, became my crutch and excuse for everything, for all my problems. It was the reason I couldn’t do this or that, it was the reason I was a certain way, or acted a certain way…but it wasn’t. I was swimming in my own sorrow. Of course my disease is limiting, there truly were and are certain things I cannot do, but where did I draw the line… I didn’t.
I remember the exact moment of diagnosis like it happened yesterday. I remember the details explicitly; what I was wearing, who I was with, and where I was. My phone rang, caller ID said it was my doctor and my stomach flipped. I was waiting for results of a test that would determine whether or not I had Lupus. I raised the phone to my ear and she uttered results that somewhere inside I already knew where positive, I had Lupus. It was like everything you see in the movies. Everything around me slowed down, noises around me became faint, I took a deep breath, found a place to sit down and told her I’d call her back.