Welcome back to our series "Letters to my younger self".
If you could, what would you tell a younger you? What advice would you give? What tips could a younger you use to deal with the struggles you know are coming?
In this series, RARE Youth Revolution is reaching out to some of the slightly older members of our community who know what it is like to grow up with a rare disease.
By writing letters to their younger selves, we hope that they can offer some advice and guidance that benefits all young people with rare diseases.
Dear younger self,
It is okay that holding a pencil the “right” way has been so hard, and that your elbow bends even further backwards after you broke it. It is okay that you are a slow runner and a fast thinker. You are seven years old and you are trying your best and that is enough.
You’re a pretty normal kid on the outside: you excel in school, swim competitively, dance on stage and love your cats. You will dream of becoming a veterinarian, a forensic biochemist, a movie director and a poet. The fogginess in your brain makes dealing with numbers even harder, but you’re still pretty good with words. At least, you will be a few years after deciding you adamantly hate writing and never want to write an essay again (keep this letter as an “I told you so” for us!). Know that you do not pass as normal for long, but you will not want or need to.
Spoiler alert: you are right about what you feel inside your body, even when you don’t have the exact scientific words for it. You are the one living inside it and making it your home every day. You know what your limits are, but that does not mean you should never challenge them.
Your relationship with your hobbies will surpass the dichotomy of “like” and “dislike” in ways you can’t yet imagine. You will partially dislocate a finger during an orchestra concert and keep playing, you will cry when you change from being able to play violin three hours straight to having to stop playing at all and you will cry again when you can hold an instrument in your hands again without pain. You will have a favorite surgeon, as silly and scary as that sounds now.
Your doctor asks you how you bruised your knees and you don’t know except that he was wrong about you being just a kid who played too hard. You never roughhouse with your friends and you always have bruises. Your doctor tells you your stomach pains are just stress from school. Your doctor asks if you have a hard time catching your breath when you run and you say yes and he explains what it means again to tell you no, you don’t, even though you feel sick every time you race your friends. Your doctor says you are healthy and you are normal and you even get to pick out a lollipop. By the end of elementary school, you start believing that’s true, but it isn’t your fault. By the time you are a teenager, you start collecting new pains that will stick to you like tar. As an adult, sometimes the only difference in going to the doctor is we don’t get a lollipop at the end.
You can already spell “supracondylar” and “anesthesia” with no trouble. Soon enough, you will learn words like “cervicomedullary” and “pisiform” and “torticollis” like they’re nothing. The biggest words you will discover are a diagnosis that impacts every part of your life: classical Ehlers-Danlos syndrome. That might not sound impressive to someone so good at reading and spelling, but your love of learning new words will help you make sense of experiences to come. Take more time to practice simpler strings of words, like “I am not comfortable with that” and “I need you to look into this for me.” Learn to say no.
The first time a doctor tells you your diagnosis is rare but they will help you manage it, you will joke to your friend, “baby’s first rare disease!” This will very quickly not be funny at all, and then become hilarious when you discover you have more rarely diagnosed conditions than you can count on one hand within the year. Most of them are related to just one unlucky gene variant and none of them are your fault. Embrace it. Keep making jokes about the funny parts and keep speaking out about the scary parts.
RARE does not mean lonely, nor does it mean you can’t still make a good life for yourself. It just means that life looks different than we expected. The people who matter will love you as you are. I love you as you are.
You will find answers, believe me, but they will not always be the ones you expect or want to hear. You will learn to make mistakes and grieve for lives you never got to live. You will be furious, then devastated, then furious again and find peace in knowing nothing is certain. Life goes on. Enjoy racing at recess before it hurts, drawing your cats and sneaking paragraphs of your books under the desk during class.
You will be okay. You will be not okay at all, and that’s okay, too. You can handle more than you realize and learn to thrive with greater resilience than you can imagine. Everything changes, and we will be just fine. You are seven years old and you are trying your best and that is enough.
Love,
Your 23-Year-Old Self
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LinkedIn: Carter Hemion
Share your own Letter to My Younger Self with our readers. Email hello@rareyouthrevolution.com