How the slogan ‘Show Your Stripes’ took on a new meaning for me

I loved pop-up books as a child. The pieces that moved — delicate structures jumping off the page — captivated me, as did finding all of the flaps with hidden pictures. So it was no surprise that when our two girls were young, I littered our house with them.

These books weren’t just a staple at home but also in the hospital, as our youngest daughter, who’s 12, began seeing various specialists after being diagnosed with Friedreich’s ataxia (FA).

The one element of pop-up books that I both love and hate are the pictures overlaid on top of each other. If you aren’t familiar, the picture on the page is cut in strips, and if you pull a tab, usually located on the side of the page, strips from a different picture slide through the top picture to cover it up. With this movement, one picture transforms into another.

I love the concept, but in reality, it’s frustrating. The pieces of paper often stick together, so you need to jiggle the tab and mess with the paper to support the transformation. In one Christmas book, we gave up when the paper became hopelessly stuck halfway through, leaving jolly St. Nick partly in the chimney and partly disappeared.

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As I thought about Rare Disease Day 2025, which takes place on the last day of February, and its catchy phrase, “Show Your Stripes,” the pop-up book concept came to mind. I don’t have a rare disease, but I’m parenting someone who does. Although my daughter’s journey isn’t my own, it’s changed me in many ways. A new picture of my life has emerged.

I sometimes feel like I’m two pictures, and one of them is front and center nearly all the time. Managing FA and all the things it brings, such as doctor appointments and my daughter’s decreased mobility, can often feel like the dominant picture.

Sometimes I feel like the other pieces of me are hidden. When caregiving, I’m attuned to my daughter’s and my family’s needs, and it can be easy for me to lose sight of myself, what I need or want, and maybe even a little of who I am. But those things are still there, hiding behind the picture of the part of my life that is front and center. Maybe I have stripes, too.

Managing my professional stripes

A few months ago, I noticed that my LinkedIn account was receiving increased traffic because clients were looking me up before big presentations. I thought nothing of it until I realized that everything on my account, apart from my profile, was tied to parenting a child with FA. Despite all the work I’ve done in other areas, I was posting only about one part of my life. Only one strip was showing, and I was out of balance.

I took a breath, hit a button, and hibernated my account, providing myself space to think and perhaps reclaim part of my professional life. It happened so quickly, but FA had become the dominant feature of almost every area of my life.

Maybe this year, showing my stripes means that I’ll work on intentionally seeing myself for all the things I am, with and without FA. All of my strengths, struggles, and decades of work — with both successes and failures — are a part of who I am. The areas where I have a great community and where I feel lonely can each have their own place in how I show up in my day-to-day life.

Maybe there will always be another picture of myself hiding that I need to pull out. Perhaps that’s the message I need this Rare Disease Day. FA is a big part of our lives, but it’s only part of it. We’re more than a diagnosis, more than managing a disease. We have unique stripes, and all of them deserve to be seen. All of them are important.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.