What I Discovered Deep Inside of Me After My Lupus Diagnosis

Today I watched a movie full of young people doing active, energetic and daring things. They leapt, climbed, jumped and challenged themselves physically. I paused the movie at times to do my laundry, hauling it up and down the stairs. Sometimes it can be difficult or outright impossible. Today it wasn’t. Today was a good day. As I was heading up and down the stairs, it occurred to me there was a spring in my step and a surge of energy I normally don’t have. And then all of a sudden, it hit me.

That used to be me.

Before lupus touched my life, I was very active and energetic. I was bouncy. I would skip down the grocery aisle with a cart full of stuff. I went hiking. I climbed rocks. I would jump and skip steps, up or down the stairs. I would take the path less traveled because it was more fun and challenging. I loved to run, to feel my muscles flex and the air expand my lungs. I did all of this for fun. Because I felt like it. Because it was just me.

But things have changed since my diagnosis. Stairs are a challenge most days now. I almost never skip under any circumstances. I can’t run and chase and race my son like I’d always imagined I would. I can’t go hiking, horseback riding or rock climbing. I can’t even get to the rocks in order to climb them these days. It was difficult to accept the new me.

But today I realized something. The energetic me is still there. It’s inside of me, waiting and lurking. The person who loved to do Tae Bo, the person who laughed and danced with my son, the person who would step off the sidewalk just to step up on a rock and jump off onto the sidewalk again, is still there.

There are drawbacks to this discovery. Part of me is thrilled I haven’t lost that aspect of myself entirely. It’s simply buried beneath pain, tiredness and illness. But the flip side of the coin is that it’s a part of me I can only glimpse on rare occasions. It’s hidden and buried deep. It’s buried so deep my own son doesn’t even know the energetic me. If I suddenly were lupus-free, he would be baffled by my energy level, my bounciness and my goofy antics.

So there’s the inner me and the outer me. How do I keep myself intact, whole and sane under these conditions? I’m not sure I have the answer just yet, but it’s has to be here somewhere because I feel an amazing surge of joy when I realize I’m still my energetic self deep inside. That can’t be a bad thing, right? 

I refuse to lose what I now know is still a part of me even if I can’t access it. I may not be able to use these aspects of myself right now, but they’re still there. They’re still part of my identity, and I will hold onto them tightly as the treasures they are.

Follow this journey on Lupus Rhythms.