On the outside, I look like a typical teenage girl. My Instagram is filled with pics of me practicing and laughing with the other girls on my high school dance team, I spend the weekends rooting for college football, and when I'm not studying for tests or worrying about college next year, I'm hanging out with friends, family and my puppy, Goldie.

But there's a lot about my life people can't tell just by looking at me. My health problems started when I was just a pre-schooler, leading up to a diagnosis of celiac disease in first grade (way before going gluten-free was hip and trendy). I thought missing out on birthday cake and having to bring my own snacks to sleepovers was bad enough, but by junior high, more problems started to show up, and I became more and more separated from other kids my age.

In seventh grade, I started to randomly get dizzy and I'd feel super tired, even if I'd gotten a full night's sleep. My joints started aching, and they popped and cracked from the slightest movement. My skin turned ghost-white, and every little bump left a black-and-blue bruise.

But my body was different in good ways too — specifically in dance class. The first time I realized it was around the same time the aches and pains started. I was 12, and my dance teacher asked me to demonstrate a "six o'clock" in front of the class, which means she wanted me to put my hands on the floor and extend one leg straight up to the sky. I'd never heard of it, and I'd definitely never tried it, but I went for it anyway. My teacher freaked out. I was sure I'd done it all wrong, but her reaction was actually just disbelief — she'd never seen anyone go into such an extreme split on the first try. From then on, I became known for my crazy flexibility.

Bending and stretching came so easy to me. I was still pretty new to dance, and my flexibility helped me move up quickly in my classes. But I kept getting injured. First I sprained my back, then my ankle. I started to feel a stabbing pain in my hips that eventually moved down my leg all the way to the ball of my left foot. By the time my hands and feet started to go numb for no reason, my parents and I were beyond worried and confused.

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Senior portrait

We couldn't figure out what was going on, so I tried Googling my symptoms, and something weird I'd never heard of came up — Marfan Syndrome. My symptoms weren't an exact match, but the page linked to information on something related called Ehlers-Danlos Syndrome, or EDS. There I read a list of nearly all my symptoms, many of which had seemed completely unrelated. After bouncing around between doctors appointments and visits with specialists, I finally got an official diagnosis just before I turned 14. My web search was right — I had EDS.

Chances are you've never heard of EDS, but it's actually not all that rare. It affects about 1 in 5,000 people around the world. It's a genetic connective tissue disorder that weakens collagen, the "glue" that holds the body together. Collagen gives strength to everything from skin and joints to blood vessels and internal organs. When it doesn't work like it's supposed to, the body becomes weak and wobbly — like a house of cards. My physical therapist once said it's like walking around on ice while everyone else is walking around on concrete.

The type of EDS I have — hypermobility — is just one of six forms of the disorder, and it's responsible for my constant injuries and other tough symptoms — and also for my ability to do such extreme leaps, kicks, and splits. My joints dislocate easily — sometimes even while just doing push-ups during practice — and I've sprained just about every body part you can imagine. I have early-onset arthritis, and my muscles spasm wildly because they're working so hard to make up for my weak ligaments and tendons. Every time I injure myself (which is often), I have to go through a long routine of icing, bracing, lots of physical therapy, and unfortunately, rest. Over the past three years that I've been on my high school dance team, I've spent at least nine months sidelined with various injuries to my back, knees, ankles, shoulder, feet, hips, wrist, and elbow. It's frustrating when you just want to dance!

EDS makes simple, everyday things hard, and sometimes impossible, for me. I can't tie my long hair into a ponytail because my hypermobile fingers tire out so easily. Carrots and apples are a nightmare to chew because crunchy foods make my jaw ache. I love crafting (I just got my thousandth follower on Pinterest!), but I can't actually make most of the cool DIY projects I post about because scissors strain my hands. Buttoning shirts is tricky, and so is baking — my hands start to shake and I can't even pour a teaspoon of vanilla without spilling it on the counter.

My type of EDS also weakens my blood vessels, and causes something called dysautonomia, which means my autonomic nervous system doesn't work properly. It causes problems with my blood pressure and pulls blood away from my brain and down to my feet, turning them purple. It makes me dizzy, nauseated and weak, and blurs my vision. Worst of all, it's the reason I get so tired. I have to take two hour naps every single day after school, just to get through my homework. I love reading, but when I'm tired, my brain shuts off and I can barely understand the words on the page. I remember things best when I write them down, but by the end of the school day, my handwriting is so thin and shaky, it's barely legible.

But the hardest part of EDS is dealing with having really low energy every day. Honestly, I can't remember a time in my life when I wasn't exhausted all the time. I know that most kids my age get wiped out from late nights cramming for tests, but I'm practically bedridden after totally average activities, like shopping at the mall. I have to pass any time my friends invite me to go with them. Between walking from store to store and trying on clothes, my body just crashes. When the fatigue hits, I feel like I could literally fall asleep wherever I am, and I usually get so tired I can't think straight, which means I often don't remember the day at all.

In a lot of ways, the disease robs me of normal teen experiences, friendships, and time. When symptoms come up unpredictably — trouble breathing, joint pain, weird allergic reactions — I often have to scrap whatever I was planning to do. And the two hours I have to spend napping every day could be spent on so many other things — homework, reading, or just hanging out with friends. I always have to leave sleepovers because I can't stay up late. When my family took a vacation two years ago, the trip took so much out of me, I slept through our whole stay, including an entire boat ride (I slept under a pile of towels) and my favorite meal that my aunt and uncle make each year. It's hard missing out on so many bonding opportunities with family and friends, and it means being left with fewer fun memories.

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Hanging out at a college football game

Some of the best memories I do have, though, are from dancing. It's been the number one reason I've been able to get out of bed every day. A lot of people, including my doctors, have a hard time understanding how I can have the energy to dance when I can barely make it through school. I don't have an explanation, other than it's my thing — it's what I love to do.

Fully committing to dance means I've had to make compromises though, and I hate compromises. I like working hard and I don't like limitations, but because the physical demands of dance are so intense, I've had to figure out ways to give my all when it counts, and scale back everywhere else. I've sat out football games and fall practices so I can dance throughout the competition season leading up to the state championship each spring. I've had to stand by as my team takes part in Monday night weight training sessions with a trainer, and I feel bad missing the boot camp-style bonding they all experience. The weirdest part was being a captain this year, but not being able to work as hard as I wanted and having to cheer my teammates on from the sidelines instead of leading them on the dance floor.

I don't like to sound like a whiner, and I don't talk about my disorder often. But staying quiet means a lot of people don't know there's anything wrong with me. While I hate the idea of getting sympathy for my struggles, it's sometimes frustrating to look so normal on the outside, especially when I feel like I'm breaking apart on the inside. When I first started dancing, some of the girls were jealous of my flexibility, but they had no idea what kind of pain it caused. When everyone else has to write their in-class essays by hand, I need to use a computer, and most people don't understand why. When everyone else had to take the ACT on one stressful Saturday, I was allowed to break the test up every day after school for a week to accommodate my severe fatigue. Some people thought it was unfair that I got special treatment — but they didn't understand how much harder it was for me to focus and stay awake for the testing after a long day of classes. They didn't know what it was like to go from getting straight A's in the gifted program to not being able to read for almost a year and dropping all of my AP classes to keep up with doctor's appointments. They don't know I have an elevator pass at school to help with joint pain, but that I rarely use it because I am afraid people will think I'm faking. It's impossible for anyone to really get it, because I look just like any other high schooler.

I think that's why I decided to start speaking out. It's not just about me and my experience with EDS, it's about all the people out there struggling with issues that aren't always visible on the surface. Staying silent means things continue to get misunderstood.

I don't know what the future holds for me. Sometimes I worry about how I will have a career or even a family of my own one day, but I'm continuing to take risks and refusing to let EDS totally rule my life. Rather than stay home in Seattle for college, I've decided to move several states away to attend my dream school in Texas. The transition will be a challenge for me. I've had to start working with one of my doctors to learn new tasks so I can be independent. A lot of the responsibilities I'm taking on aren't the type of duties most 17-year-olds have to worry about: learning to call in prescription refills so I can keep up my 26-pill-a-day regimen, understanding how to lead doctor's appointments so my questions don't get lost during the visit. While most of my college classmates will be partying late and scarfing down pizza, I'll have to really stay on top of my health just to make it through the next four years.

My days as a dancer are done. March 28 was my last day on the dance floor with my team at the state championship. It's hard to explain how I could love something so much that's basically killed my body, but dance has done so much for me, and filled in the gaps that EDS has left. It also fueled my competitive side — I love training to win. Even though I won't be able to perform and compete again, I hope I can one day teach little kids, and give them some of the happiness dance gave me. It's the best outlet I could have ever asked for, and it's something that will always be a part of me.

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Performing at the State Championship

EDS has taken a lot away from me, but I think it's given me a lot too. It's given me a kind of perspective on life and what matters that I don't think I would have otherwise. I think it's easy to get caught up in high school drama, but when you spend a lot of time at a children's hospital, and hear code blues called over the intercoms, you quit focusing on the little stuff. When I couldn't take PE in ninth grade, I took a peer tutoring class instead, and I discovered how much I love working with kids with special needs — it's something I definitely want to do in the future. I think having EDS has also made me more empathetic, but in a task-oriented, get-it-done kind of way. I don't like to sit around feeling sad about my problems, or anyone else's — I want to work hard to find solutions. I'm drawn to fighters (guess that explains my love of college football), and I want to keep fighting for me, and for others who could use the help.