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.
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.
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 show 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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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
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Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
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Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.
