A Letter to My Younger Self: 8 Lessons I've Learned About Ulcerative Colitis
As part of HealthCentral's open letter series, Mandy shares IBD advice with her younger, prediagnosis self
Dear Younger Me,
You’re 19 and your first year of college has really thrown you for a loop. From adjusting to dorm life with six suitemates from an only child household, to trying to figure out what in the world you’re going to major in, you’ve been stressed out — to say the least.
You’re also not eating super well or taking care of yourself. I understand, but you need to take the time now to stop and breathe, because things are about to get real. Bear with me.
You’re going to poop your pants — a few times. And then you’re going to get bad stomach pains that send you to the urgent care center for 11 hours. Then, you’re going to get admitted to the hospital on the day you’re supposed to register for your sophomore year of classes. You get a diagnosis: It’s ulcerative colitis (UC), a form of inflammatory bowel disease (IBD).
You’re going to get put on some IV steroids and get released. And then, stupidly, you’re going to refuse any further treatment, including a consult with a gastroenterologist. Just a forewarning, you’re going to have to learn to drop some of that stubbornness of yours soon.
You’ve been following your path — one of being hard-headed and avoiding anything that might shake up your world. But that said, I want to offer you some advice and some hope for the future, because as tough as it can be at times, living with UC won’t always be as bad as you think.
You’re going to find out who your real friends are. You’re going to start bailing on plans because you’re going to be tired and feel like crap — a lot. Some friends will be super understanding, and others won’t understand it at all.
You’re going to make amazing new friends. You’re going to attend support groups, and then you’re going to join Girls With Guts as a blogger. It’s going to change your life. You wind up on the board with some incredible women. You’ll learn that connecting with others who share your experience can be incredibly powerful.
You’re going to be OK. There are going to be some downright terrifying experiences and a few trips to the hospital. But this is a part of having UC, and you’re going to need to learn how to talk to your doctors and be open and honest.
Take your flipping medication. Stop thinking you don’t need it or that it’s not working. It is, and your symptoms are only going to get worse if you keep stopping and starting your meds.
Pay attention to your diet. You’re going to try Paleo and Mom is going to do everything in her power to cook for you while you’re home in the summer. Don’t waste time on this or other fad diets — just start keeping a food diary and pay attention to what you eat.
You’re going to find the greatest partner. He’s going to make a point to understand your UC and serve as a caregiver when you need it. Your UC doesn’t gross him out, and you need to be honest with him about everything you’re going through. It’s going to be great. You’ll learn that chronic illness doesn’t mean the end of your love life.
You’re going to become an advocate. I know you don’t think you have anything to contribute to the UC conversation, but you’re going to write your thesis about the bad patient education materials you received. And you’re going to join HealthCentral to speak more about your experiences and empower other patients. You’ll learn there are ways everyone can become an advocate.
UC doesn’t equate to your worth. This one is one of the most important to remember. Some days you’ll be able to tackle the world, and other days, not so much. If anything, UC’s going to teach you how to find balance and how to treasure the good days and special moments.
Don’t let UC define you. Instead, let it empower you, humble you, and challenge you. This is one fight you’ll have for a very long time, so make the most of it. For all the not-so-fun stuff UC brings, you’re going to be surprised at the good that it can.
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