Lupus Awareness Month: Fear and Loathing
May is Lupus Awareness month, and between communing with other lupies via twitter and facebook and writing blog posts, I’m trying to do all I can to raise awareness for a disease that most people know nothing about yet that affects more people than many other well-publicized diseases. Click here for more info about lupus.
It’s been nearly five years since I first began experiencing symptoms. And while I had the immense luck of having virtually no symptoms for more than a year, I just had the worst flare since I was diagnosed. It made me realize a number of things:
- I had convinced myself that my lupus had gone into remission–possibly forever–or that I was somehow miraculously cured.
- I pitied and sometimes was just morbidly curious about other lupies’ more serious symptoms and their long lists of medications. Neither of these sentiments fall under “sympathy” or even “empathy.”
- I don’t have a contingency plan for living with lupus.
From the list above, you can conclude that I’m naive, self-centered, and… naive once again. As I lay in bed huddled under four heavy blankets, shivering due to a sudden fever, I tried unsuccessfully to soothe my wailing baby who was lying next to me. He had bonked his head and was having a bit of time getting over it. My husband had no luck soothing him and it was up to me. It was getting late. I was exhausted. My muscles didn’t want to function anymore, and my body felt alternately like it was on fire and like I had bugs crawling all over me. As I held my baby in my shaking arms, I realized I was doing more harm than good, so I laid him on the bed next to me and eventually we both fell asleep.
But just before I fell asleep, I started to cry. My husband asked me what was wrong, and I told him the truth: “I’m just feeling sorry for myself.”
And I was. I felt sorry for myself because I suddenly realized I didn’t have a plan for caring for my son during a flare. I felt sorry for myself because I realized that my medication was not the wonder cure-all that I’d convinced myself it was. I felt sorry for myself because I was afraid: How many other lupies’ stories had I read that were filled with descriptions of terrible symptoms and pain?
So there it is. It’s Lupus Awareness Month, and I’m suddenly very aware of lupus and its impact on my life and who I am.