The Missing Piece of the Puzzle That Lupus Has Stolen From My Life

Living with lupus is a bit like having a puzzle with a missing piece. You may not notice initially, but when you start to put it together, you realize it’s not quite right.

Maybe you push the thought of the missing piece out of your mind for a while, but as you near the end of the puzzle, you can’t ignore it. The lost fragment means the puzzle is never truly whole.

Sometimes, just for a short while, I can fool myself into forgetting that I’m not sick. As I’m on the final set of reps in an exercise, sweat beading on my forehead and determination are the only things driving me forward, and I feel strong and powerful. I feel healthy. And in that moment I forget that what’s inside of me doesn’t match what everyone else sees on the surface.

I’m fitter and stronger than ever. I’ve put in hard hours at the gym, with the conscious goal of improving my physical condition, and the results are evident: It has absolutely paid off.

The example that makes me proudest is my blood pressure. Nearly a year ago I was admitted to an ER with a range of symptoms. One was blood pressure so high that doctors couldn’t understand how I hadn’t experienced cardiac arrest.

It’s never a good sign when doctors repeatedly double-check your blood pressure. It’s like they’re hoping that the next round shows that the first reading was a bad joke. My hard work has led to me being able to boast that not only is my blood pressure good, it’s now in the excellent range…And I can feel it!

But the thing is, no matter how hard I train or how healthy I look and feel, I live with the harsh reality that I can never attain the status of 100 percent healthy.

I could eat the most nutritious foods available, devote my life to exercise and fitness, ban all alcohol and excess sugar and fats from my diet for the rest of my life, but 99 percent is the best I can hope for.

You never know how bad you want something until you can’t have it. I regret taking my good health for granted. I never appreciated it when I had the opportunity.

Nowadays, I’d give anything to know that I had the good health a lot of people do. But it’s not going to happen.

It doesn’t matter how much I want it, or what I’m willing to give up. Part of me will fall under a category that’s nowhere close to healthy.

Maybe “healthy” is just a word, just a label, but it upsets me to know that perfect health will never again be an achievable goal for me. It hurts to know a piece of my health will always be missing.

A single, irreplaceable piece that lupus has stolen forever.

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today.

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