9 Things I Want High School Students Diagnosed With Crohn's to Know


To the high schooler recently diagnosed, I was once in your exact shoes. June 2013 I just finished up my freshman year of high school, but it was at that time that I was diagnosed with Crohn’s disease. I was scared, I didn’t know what to do next, and I felt alone, but through these past few years, it’s taught me so much. Here are just some of the things that I’ve learned since my Crohn’s diagnosis that I wish someone told me…

1.  You are not alone.

I know, my guess is you’re tired of hearing this by now and you might doubt it. You probably feel like the weight of the world is on your shoulders and no one “gets it,” but the truth is, you have millions of people around the world who have your back who “get it.” We were at one point or another in a situation very similar to yours.

2. Ask for help.

As hard as it may be, once you take that initial step in asking someone for help, you’ll feel so much better. Find a teacher, school counselor, coach, music teacher… find someone you can trust and fall back on when you are overwhelmed. There’s a good chance you’ll miss some school and having someone who will always be there for you, who’s room or office is always available, will make this transition so much smoother. I would not be the person that I am today if it weren’t for some of the people in my life who I put my trust in when I was first diagnosed.

3. Your health comes before everything else.

You may not finish your homework from time to time, or have to be benched for a basketball game because you are too sick for practice, but trust me – it’s better that way. Take care of yourself first so you can get back to being the person you used to be. One game isn’t the end of the world, neither is one bad grade. I know it’s easier said than done, but soon you’ll realize it’s not worth pushing it to the extreme.

4. Get a 504 plan in place.

Ask your doctor about having a 504. This will cover any accommodations you may need in order for you to be the best student that you can possibly be. Not only will it put accommodations in place, but it will also help teachers understand what you need from them to help you succeed as a student. If you don’t feel comfortable talking to them one on one, send them an email or write a note letting them know what you need from them.

5. Form a relationship with your school nurse.

The school nurse will end up being your best friend when you’re in a flare. They will have your medications on hand, heating pads, a cot to sleep, and most importantly a private bathroom. Your health comes first and sometimes that means hanging out in the nurse’s office for a period or two. The nurse gets it, and she’s there to help you

6. Find a hobby.

Find something that will keep your mind off of your inflammatory bowel disease (IBD). Although some days you’re too sick to get out of bed, there will be plenty of days when you can be a “normal” teenager. Find something that you enjoy and that you are good at. Find something where you can have victories when this disease seems to constantly beat you down. For me, music was my escape. My voice lessons each week were my escape from reality; music consumed my life. Even when I was too sick to actually sing, I’d still go to my lesson. It was my safe place, my escape, a place where I could be myself, even when my Crohn’s got in the way.

7.  Don’t be afraid to cry.

Everyone needs to cry from time to time, even you. Life sucks when you have IBD and I get that. Don’t bottle everything up, or you’ll end up like me… losing it in the middle of NYC while waiting for a bus in the freezing cold, while your voice teacher is holding you and assuring you that it’s OK to cry (but that’s another story). It is OK to be scared and it’s OK to be frustrated, so cry. Cry in the shower, in the middle of your calculus final, or with a trusted friend at Starbucks. Just always know that things will get better and soon you’ll get back on track on this journey through life.

8. Speak Up.

Speak up for your health and for your personal well-being. When you go to a doctor’s appointment, make sure to tell your doctor everything… not your parents, you! This is a disease that you are living with, not your parents. You are the only person who truly knows how you are feeling. Along these same lines, if you don’t agree with your doctor let him or her know what you are thinking. My doctor told me I was in remission, but deep down I had a gut feeling that I wasn’t. One week later and I was admitted to the hospital in a full flare. Yes, medicine works wonders today, and the technology doctors use is amazing, but there are times that the blood work or scopes may miss something. Your gut feeling nine times out of 10 is the right feeling.

9. You’ve got this.

You so got this! Every day is another step closer to victory. Another step closer to being in remission. You have to fight for it, but you’ve got this. Every trip to the doctor, every surgery, the monthly blood work, the daily meds, and you’ve still got this. You are going to shine in this world because you’ve been faced with this challenge. Whatever life throws your way you can tackle. You are going to look back years from now and be thankful for this bump in the road. For the rest of our lives we’ll be fighting this disease, but for the rest of our lives, we’ll also be unstoppable.

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