Re-imagining my disease…

I like to make up stories to comfort myself. Today’s pretend is that I share the same soul with a warrior nun in fantasy Shogun dimension. When I feel like my hand is being stabbed, it’s because she’s battling in her epic quest to save her world from evil. Something in the universe just got our nervous systems crossed, and that’s how she’s able to survive where others wouldn’t. I wish her well!

One of the most important things I have learned over the course of my disease is that there’s no use making excuses. People can’t see my illness, so they don’t understand what I’m going through. My disease makes me unreliable, lazy, upset, and distracted. My experience is debilitating pain, fatigue, anxiety and despair about what I’m going through, and preoccupation with managing my symptoms. But that doesn’t change what it looks like from the outside. I could say it’s not my fault, which is absolutely true, but that just looks like whining and excuses.

I have another option, though. I can OWN it. Yeah, I have to sit a lot. Yeah, I stroll along the sidewalk. Yes, I’m a princess and will ask for the comfortable chair from you. Nah, I don’t really want to do much. Sitting and talking is perfect for me. I would fit in so well in more the relaxed, Mediterranean-type cultures.

On days when I start to get depressed about not working, I imagine that I’m one of those idle liberated aristocratic girls like in an Agatha Christie mystery. It’s perfectly expected for me to take an leisurely breakfast and not leave the house until ten. Then it is customary to take lunch with friends at the club (my favorite coffee shop) and discuss events. Supper and then return home to work on my writing. Like in Cold Comfort Farm, “I hope to publish a novel when I’m 50.”

On days when I’m really fatigued, I pretend that I’m a Southern Belle—a sweet delicate flower. It’s perfectly fine for me to sit for long stretches, sipping iced tea and fanning myself. Running around is for children. The adults sit on the porch and hold polite conversation. It does me no good to despair over my limitations. Trying to push past them only leads to disaster. It’s more responsible for me to say, “No, thank you.” Yes, that means that I’m not up to the activity levels of my peers. I’m working on that. But in the meantime, it’s so much better to make peace with it.

So I make up little stories. I know they’re not true. But they allow me to behave in a way that is more noble and polite. It allows me to maintain my mood despite what I’m struggling with. It allows me to imagine that everything is just fine even within my limitations. I can choose who I want to be and make it awesome, instead of seeing my disease as someone I’m forced to be. It gives my behavior value. It takes away the shame and stigma for me.

What do you do to build your self image in dark times?