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 are reaching 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.
This entry comes from Courtney Felle! Courtney lives with hypermobile Ehlers-Danlos Syndrome.
This is Courtney's LETTER TO MY YOUNGER SELF!
Dear Younger Self,
I know how old and wise you feel. You’re the oldest you’ve ever been, a whole twelve years old, almost out of eighth grade. The tense headache you have never goes away, but I think you already knew that would happen. What you didn’t know is how your symptoms would twist and grow. Your shoulders and neck hurt more obviously now. Your elbows, knees, ankles, and hips pop out of place and grate angrily until they can click back. You’ve learned new vocabulary: myoclonic, myofascial, subluxation, rheumatologist. It took over eight years, an incomprehensible, additional 67% of your life so far, but you’ve gained a new diagnosis: hypermobile Ehlers-Danlos Syndrome. And now, when you look back at pictures of your twelve-year-old body, you’re so angry. Against all odds you got older and now you really know: you were a child.
You had hoped for so long a diagnosis would explain everything. You’d been taught to expect doctors to act as experts, to methodically discover what was wrong and fix you like a creaky machine receiving miraculous oil. But you do not get fixed.
You spend years getting told your pain is simple puberty, stress, or sadness. You spend months between appointments swallowing extra-strength Tylenol and silently fearing you’ll never get taken seriously.
One doctor tells you to spend less time on homework and try getting a boyfriend. Another looks you in the eyes, freshly fifteen, and tells you to try masturbating more. You know now how horrific this comment is. (Courtney, that’s harassment, your girlfriend says with unsettling insistence when you mention it.) But the real horror was how mundane it felt when you first heard it. With the dismissal and disdain you come to associate so deeply with doctors, of course one was saying this. You took years to even recognize how appalling it was, let alone really feel upset. You wanted to hold onto your anger, yes, but you were also trying to survive. You were so sick, and through it all, you were also a regular teen girl, confused and overwhelmed by puberty, stress, and sadness—which no one ever provided any resources for, either.
Eventually, you will find providers who want to help, even though the sinking panic in your stomach when you walk into a medical office never truly goes away. You will discover how to game your options: to choose younger, femme providers, to seek out buzzwords in their professional biographies like “patient-centric” and “social determinants of health” that signify maybe they’ll see you as a person. You will learn to fill out accommodation forms for your college. (You do go to college, although it’s far from the West Coast escape you had planned, in tight-knit rural Ohio.) In your junior year, completing yet another set of paperwork, you will Google “wiggling wrists,” trying to put your vague, overwhelming illness into legal language. The results will pull up online forums about hypermobile Ehlers-Danlos Syndrome (hEDS), with pictures of joint instability and accounts of musculoskeletal pain just like you experience. Oh, you will think with sudden clarity. Most of your partial diagnoses up until now have felt 60% accurate at best, but this, this feels too specific, too personal, for anything less than 100%. I have that.
Your neurologist will confirm your suspicions by bringing up hEDS on her own at your next appointment. You’ll discover the discomforts of finding your Beighton score. You’ll learn how to wade through large amounts of genetic research and potential treatments and dietary exclusions that someone online swears worked wonders for her. You’ll talk about hEDS enough that the pronunciation no longer feels stiff against your lips. But before any of that, alone in the parking lot right after your appointment, you will feel relieved.
You finally know what happened. You finally know what is happening. You dreamt of this ending for so long. And now, sitting in it, it will simply feel like another beginning, a new system to understand and decide: What next?
You’ll get forearm crutches, and you’ll nearly cry from how they lessen the weight of your pain the first time you use them in your new city apartment, where you have your first post-grad job. You’ll search “hot pink wheelchair” online and create spreadsheets of pros, cons, and expenses associated with each one, knowing you will need one soon, always sooner than you had once thought. The speed of progression is unpredictable, but the fact of progression never is. You’ll have strong opinions on automatic door openers and accessible public transit. You’ll have a grimacing smile you pull out when someone on the street says, “Wow, what happened to you?” and you just want to get home. You’ll love your mobility aids with the force of someone who knows what it means to have them, to show up fuller with them.
You’ll figure out how to explain hEDS to your mom, with all its genetic complexities. You inherited it from her side, but I think you already knew that too. You’ll spend a long time unraveling how your diagnosis opens so many retroactive questions about your family’s history. Yes, Aunt Natalie probably had what you have. Yes, Aunt Natalie probably died from what you did not, and hopefully will not, die from. The “probably” holds everything it is impossible for you to really know. Day to day, you are learning to live with that.
Most days, you don’t feel like you truly escaped your childhood like you had planned when you were 12, or 14, or 17. You have a lot of trauma that you’ve learned to call ‘trauma.’ But when you look around at the little community you’ve carved out for yourself, you feel immeasurably grateful and proud, and maybe that doesn’t feel all that different from the big dreams you once had, when you push down to the root. Most of your friends are disabled and chronically ill too. Your roommate borrows your foldable cane whenever you both dress in hot pink and tight pants for loud pop concerts. Your girlfriend rants about chronic pain and critical disability theory with you, and you learn more about service-dog-in-training laws than you ever anticipated. You spend whole summers on large Zoom calls where every single person is disabled, and you get to ask the truly interesting questions about ableism and access that can only emerge when everyone gets it.
Sometimes, you feel so public about your illness, so visible and so aware of the dangers that visibility can bring: ableist violence, economic and employment precarity, policy structures in which you never get taken seriously. Sometimes, you look around to others you trust, painstakingly establishing more space for disabled bodies, and you know in your bones how necessary your visibility is. This is how you ever get to feel safe. The world does not often produce the conditions that let you embrace being either ‘public’ or ‘safe,’ let alone both, but you are becoming someone who knows how to push in the right places.
You have never been an adult who was not also deeply chronically ill.
You do not know who you would’ve been or what you would’ve been doing—what you would’ve studied in college, what jobs you would have chosen, what friendships and relationships you would’ve made. Most of the time, despite everything, you’re so grateful you never had to find out. You’re increasingly unsure you would like this healthy but oblivious alternative of yourself. Slowly but endlessly, you are learning to call chronic illness the biggest blessing of your life. You know how surreal that is. In every sense, you know what it means.
I know this doesn’t make sense. What matters is that it will, only through ten hard-earned years that will challenge and expand who you ever thought you could become. You’re the oldest you’ve ever been, yes, but you’re also the youngest you’ll ever be again. Every day, you look back through the layers of yourself, and you remember. You remember.