A Letter to My 21-year-old, Newly Diagnosed With Crohn's Self–From 13 Years in the Future
By Natalie Hayden
This past week, I turned 35. Birthdays for me are always a time of reflection on what was and excitement for what the future holds. Each year is so transformative, especially when it comes to how you handle and deal with chronic illness. When I was diagnosed with Crohn's disease at age 21—a month before my 22nd birthday—life had so many unknowns. I bottled up a lot of fears about how my life story would unfold and if I would be able to accomplish the hopes and dreams I had thought were a given.
This week, a letter to my 21-year-old, newly diagnosed self—from my current 35-year-old self. With time and experience, comes perspective. Perspective that I wish I had back when my world came crashing down upon me after learning I would forever have a disease for which there is no cure.
For those embarking on this journey—whether you're the patient or the parent—you may feel like you are drowning in worry of what is to come with your lives. I hope my words will bring you comfort and the knowingness that you have a lot of life to live—and you will do just that.
Dear Natalie (age 21),
I can still see you looking at yourself in the mirror, feeling like a skeleton of who you used to be. Cheeks sunken in, eyes tired, arms covered with bright purple bruises from all the IV sticks, pokes and prods. You're sitting up in bed, popping big bubbles with your chewing gum, trying to deal with the insomnia and ravenous appetite that comes along with taking 60 mg of prednisone. You're thinking about how easy and simplistic life was a matter of weeks ago, graduating from college—hoping to land your first television gig as a news reporter.
Everything feels like it's in shambles. You are perplexed about why you were dealt this hand of cards and why the rug was completely pulled out from under you when just a matter of months ago, you had the world by the tail.
Here's what I want you to know. Nothing comes before your health. No job, no relationship, no friendship. There are going to be difficult times ahead as you figure out which people in your life genuinely want to be by your side, and which are only around for the fun, healthy times. It's a path that will bring you heartache. Significant others will let you down—you'll be disheartened when they fail to show up when you need them most. But then, it will happen. You will meet the person who was meant to fight this fight beside you. You'll know. You'll see how that person loves you unconditionally and even more so, because of your illness. They will see you as so much more—not some sick person. They will see you as a person who has a sickness that is a part of them, but far from all of them.
Professionally, you may need to take a different path that better suits your needs. Don't allow this illness to make you think you aren't capable—because you are. You will surprise yourself, if you continue to be positive and find alternative ways to make your dreams become your reality. I know you're sitting there with your huge spreadsheet of 200 U.S. cities, wondering which TV station you'll be able to work at–and if your journalism career will ever happen. Looking back, I'm so proud of you for continuing that job search amidst your very first flare. Looking for job across the country as you swallowed 22 pills a day, grappled with a chronic illness diagnosis and dealt with all the side effects and pain that is Crohn's. Work ethic and attitude will take you far with this disease. You will shine under those bright studio lights.
Stop with the timelines and deadlines in your mind. You don't need to be married and have kids by age 30. I know you think you want that, but trust in God's plan for you and know that your future will fall into place the way it is meant to. Don't rush yourself. Don't feel less than just because all your friends seem to be checking off those boxes. Your time will come.
When you attend doctor appointments and when you are hospitalized, be vocal. Be your own best advocate. Don't be intimidated by the people in white coats. You know your body better than anybody else. It's ok to cry. It's ok to be angry. It's ok to lash out. Have patience with yourself as you navigate your new normal and trust that the temporary hardships and hurt are just that, scary. The first of anything can be scary. That first CT scan, that first colonoscopy, that first surgery, that first injection … it IS a lot to deal with. You'll shake like a leaf and then as time goes on—you won't bat an eye. You will find a strength within yourself that you never knew was there. You'll be a seasoned warrior in no time.
What seems so foreign to you now will soon be something you understand and can decipher immediately. Those symptoms—the pain, it's all new now. In the future, you'll have a good idea of what's happening, what triggered it, and how to help yourself. You won't be as alarmed. You'll know exactly what you need to do and when a hospital visit is a must.
I want you to know that everything is going to be alright. It's going to be more than alright. You will thrive. You'll beat the odds. You'll land multiple TV gigs. You'll fall in love. You'll meet the one. You'll be a mommy. You'll do all these things. All with your sidekick—your enemy, but also your ally, Crohn's, which is the one thing that really sets you apart. In the future you won't keep your disease a secret, rather it will come up in conversations almost immediately, with a sense of confidence. A badge of honor. Yes, I have Crohn's. Yes, it's not ideal. But yes … it's made me sort of a badass. I've been through a lot. I haven't backed down. And there's so much life left to live.
You are not broken. You are not less than. This disease will take you on a journey you never imagined. Hold on tight, hang in there through all the scares and celebrate all the wonderful feel-good days when your quality of life feels untouchable. And smile. Smile on the good days, smile through the bad days. Trust me. You got this.
Love yourself—everything that makes you, you—
Natalie, age 35
A version of this article originally appeared on Lights Camera Crohn's.