No Performance Necessary | Rare Disease Series

February is a special month in the rare disease community as it concludes with Rare Disease Day (the most unique date on the calendar every four years). Rare Disease Day is a day for patients and caregivers to come together to “show their stripes” and highlight some of the unique challenges of living with a rare disease. All month long, we’ll be honoring the challenges and stories of rare disease warriors here on the blog.

Growing up, our local dance studio was practically my second home. For fifteen years, countless hours were spent inside the studio learning ballet, tap, jazz, pointe, and, embarrassingly, hip hop for a few years. All the practice and hard work culminated in an annual spring recital.

Performing was something I had been trained to do, but being on stage was never something I looked forward to.

Living With Rare Disease

“You have handled this so well,” I heard time and time again while enduring chemotherapy to slow the growth of my rare tumor. A phrase that never sat well with my soul. Years of searching finally revealed why.

A people-pleaser at heart, the phrase unknowingly boxed me into having to meet other’s expectations of my health—a sense of having to handle my thoughts, feelings, and health well. While offered to encourage, the phrase laid out before me a stage—one that asked me to give the performance of my life—not for my sake, but for the benefit of others.

There is No Performance Necessary

Even the best of intentions can be harmful. The expectation to handle my rare disease battle well left me with no other choice but to perform—after all, people were watching.

While simply doing the best I could to navigate the challenging days before me, the thought never crossed my mind that I was working hard not to meet my own needs, but the needs of others.

If you are there now or have been there, I hope you know that your life is not a stage. There is no reason to put on a show. No performance is necessary.

Honor Your Feelings

Being open and honest about our struggles can be challenging in the best of times—and nearly impossible in difficult times as pressure mounts to put on a good face. Vulnerability requires courage that can quickly dissipate as people celebrate the good and shy away from the hard. 

Publicly sharing about my rare disease, I quickly learned to share the good—to give the people what they want—and to withhold the challenging parts. Each time I shared the hard, people moved on as swiftly as possible—as if the hard stuff might rub off. These reactions stripped away my courage to share honestly in a public way. 

And while it’s natural for people to gravitate toward good news, we must remember that we have little influence or control over the results. We rarely get to pick the outcome we face. Unwanted test results, difficult side effects, pain, and suffering can be uncomfortable to hear about, but they should never stir in us a need to perform.

I hope you never forget that you don’t have to put on a show. If you find yourself trapped in a position to perform, might I offer you this: find your people—the select few that you can turn to that can handle the tough stuff. Find the people who can help you process through every piece of the journey with love, grace, and acceptance—people free of judgment or expectation. May they lovingly push you to both honor the hard and seek to find God’s goodness within your story. May you never feel the need to “handle it well” to meet the expectations of others.

Creating Space to Honor the Hard + Seek the Good

As a whole, the world needs to create more room to honor the hard + seek the good. Weekly(ish) on Instagram, I create space for reflection. Each Saturday, we look back on all the week held—naming what was hard and pausing to see where we felt God’s presence and provision in our lives. If you need a safe space to process through the hard pieces of your story, I hope you’ll join in.

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