Rare Life
 • 
November 14, 2022

Feeling More Me

Featured imageChandler smiling and looking directly into the camera
To me, having achondroplasia isn’t what makes me beautiful. It’s one part of my life.

From a very early age, my mom always encouraged me and my sister to play and explore with makeup. Sitting in front of my little vanity and applying sparkly eyeshadows and flavored lip gloss was a favorite pastime of mine throughout childhood. It wasn’t until I was around 12 or 13 that I really started to take wearing makeup more seriously, and to think about what it meant to me.

When I think about being 13 and wearing makeup, a big part was definitely because I wanted to rock eyeliner like Avril Lavigne, to wear the Mary-Kate and Ashley shimmer stick eyeshadows and whatever sticky lipgloss I would find at Claire’s. I was obsessed with all of the makeup tips given by my idols in all of the early 2000 teen bop magazines before we had the phenomenon of beauty influencers on YouTube. But beyond this fascination, I wanted to look a certain way so people would take me more seriously.

Chandler with a Mary-Kate and Ashley toy

I don’t mean in a “treat me as if I’m 16 even though I’m 13” way. I mean that I wanted to be treated by my age because I truly looked younger than I was. The reason is, I have the most common form of dwarfism, achondroplasia.

The most common physical trait of achondroplasia is disproportionate limbs with an average-size torso. Because of this, individuals with achondroplasia tend to look (and be treated as) younger than they actually are.

As I entered high school, I started to wear makeup less and less, aside from special occasions. Even my hair was rarely tamed well. I started to notice that no matter how much I enjoyed wearing makeup, it wasn’t bringing me the joy, comfort and confidence that it had before. Sure, a lot of 16-year-olds feel this way, but it felt different for me. It was more like I didn’t feel like I was the way I was supposed to look.

As this feeling progressed, I started to lose interest in putting any effort into my appearance because no matter how hard I tried, the outcome was never, and I mean never, what I wanted. Eventually, I stopped caring about my appearance altogether. Not really in the sense that I didn’t care what people thought about me, but I self-consciously didn’t put in any effort at all. If the end results were never what I wanted, I figured, why bother? What I really, truly wanted was for people to see the “me” I felt on the inside, the real me.

One of the things I often find hard about living with a visible medical diagnosis is that when people see you, you’re oftentimes put on this pedestal and made to feel like you’re “an inspiration.” In other words, people turn you into a spokesperson for showing that different bodies are beautiful — when all you’re really doing is just living your day-to-day life like everyone else.

To me, having achondroplasia isn’t what makes me beautiful. It’s just a part of my life, and other people choose to believe that it makes me, me. I felt this acutely when I was 16 and made the decision to undergo limb-lengthening surgery. My close friends and family supported the decision, while some in the dwarfism community did not.

For me, limb-lengthening was not quite as simple as changing my body. It felt more like making my body become what I always felt it was supposed to be. I was never ashamed of who I was, but when my body changed, I finally felt more me.

Chandler before and after limb-lenghtening

Today, people look at my before and after photos from my limb lengthening procedures and they see the height and change in proportion. They see the longer arms and the longer legs. They see someone who’s putting time into her appearance again, because it makes her feel joyful.

I’ve had people tell me time and time again when looking at the photos that my smile is always much brighter in the after photos. This makes me so happy and honestly fills my self-esteem because it’s true. I’ve always loved who I’ve been on the inside, but I wanted that to physically ahow on the outside — I wanted everyone to see me in the skin that I wanted to be in.

In an interview with Oprah last year, Adele addressed the conversation around her body’s new shape, saying: “I was body positive then, and I’m body positive now. But it’s not my job to validate how people feel about their bodies.” For so long, this is how I’ve felt, but have never been able to put it into words.

I’ve learned that there really is (or there shouldn’t be) no standard body or beauty and what one does with their body isn’t always going to be perceived well by others. But at the end of the day, what I do to make my body feel beautiful and how I express that beauty, is what matters the most to me.

Chandler Crews is is the founder of The Chandler Project, a nonprofit organization that provides those affected with achondroplasia, and other forms of dwarfism and skeletal dysplasia, with the latest in pharmaceutical research and surgical advancements.

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