If you don’t tell your teachers, they’re not going to work with you because they won’t know how you’re different from anyone else. It’s not a good thing to be different, but it’s not a bad thing either. I found that they were really kind and really helpful, and they were much more understanding than I thought that they would be.
The plan we set up with the school, the 504 plan, is on attendance. The teachers are only allowed to grade you on work that you have finished, so if a parent or a kid is getting nervous, don’t worry; if you do end up getting on the 504 plan, it’s very good. And I was very lucky that I ended up with teachers for whom it was okay. If I had to go to the bathroom, even without asking, I could just run to the bathroom and come back. What I found out eventually with the 504 plan is that it not only helps out with bathrooms but it also helps if you need water. You can bring a water bottle in to class, although some of the teachers might not like it, and if you have to eat at certain times, you can do that too. So it not only helps with attendance but with special needs.
Another thing I found out is that it helps to get a calendar of all your doctor’s appointments. You would normally send in a note for the dismissal slips so they know that you’re leaving, but it helps to give them a calendar so they know when your upcoming appointment is. When I’m at school, I go to the nurse to take my medications, and she asks me how I’m doing. If I’m not feeling good she always says that there’s a room in the back if I want to lie down or something. As a matter of fact, I did that today, because lately my head’s been hurting a lot, so I haven’t been feeling good at all, and I’ve been having a lot of trouble sleeping. And even because of my stomach, I’ve had trouble sleeping. An important thing to do is sleep! If you have a lot of meetings with everybody and get everything all set up, then if you’re not feeling good and you need to sleep, you can go to the nurse, and she might have a place for you to take just a five minute nap, which might be pretty much all you need to make you awake for the rest of the day.
It was funny because fifth grade year I got a perfect attendance award; I had gone to school every single day, on time. And that marked the beginning of the end of my good attendance; I never got another perfect attendance award for the rest of my life. That summer is when I really got sick. And then my sixth grade year I was in and out of school. The greatest event for me was that I got put on prednisone. I don’t remember what the dosage was but I was put on a pretty high dose immediately, and I blew up. The kids in my class could hardly recognize me; first, because I was never there on a consistent basis; I was in and out of school. Second, they were like, “What happened to you?” I was in sixth grade, and thirteen is really kind of a hard age anyway because it marks your teenage years. I guess it was because I was five feet and all of a sudden I blew up to over a hundred pounds, which was a significant weight change for me. And then I grew a mustache and my cheeks got all puffy. So it’s hard emotionally. In school it was hard; when I was there everybody asked, “What’s wrong with you?”
When I was little, there was a year I was in the hospital more than I was out of the hospital. I missed a lot of high school. I had to take some summer courses to catch up, but luckily my teachers were really good. It was harder when I first got into college. Part of it was that I was paying for college myself, so every day I spent sick in the hospital was $150 of classes that I wasn’t going to. I know the rationale is kind of strange, but that’s how I felt. I missed two months the first semester when I got sick in college. That was hard, because I was already going through a transition period. I had to switch to a college closer to home because I was really sick and in the hospital a lot. I love my new school, and I get to see my family more, but it was difficult. You try not to let your illness rule your life, but sometimes you have to make some concessions. I kept up with my studies in while I was in the hospital; you just have to work with it. I know I’m going to have more hospitalizations in my life, so I’m just trying to be prepared for it. Luckily this year, knock on wood, I’m doing really well, which is awesome; I’m loving it. I always have a spare bag packed in case I have to go in; it sounds sad to live your life like that, but it’s not that bad. The hospital is my family, so I get to see all of my favorite nurses and doctors, and have room service!
Sometimes with homework it’s hard for me to not push myself and stay up late to finish an assignment. I should just go to bed and realize that I can do it at another point and I can make it up and the best thing for me really is to sleep.
Things You Don’t Want to Talk About
Navigating school is hard for a kid with IBD. For me it was iffy; you’re sick all the time, you have diarrhea, and you feel nauseous. These are bad things that you really don’t want to talk about. Say you’re an 11 year old kid and you have diarrhea all the time. It affects you socially, and it affects your self-esteem, because you’re on medications that make your face fat and you may have growth problems as well. It affects your whole body, so there are a lot of self-esteem issues involved. It’s one of those things that you can’t see from the outside. You could look at a kid with IBD and think they look fabulous, but the disease is there, and it’s definitely affecting them. So it’s very challenging, and kids aren’t willing to talk about it, for the most part. Because sometimes other kids are cruel; that’s just what it comes down to. So here you have a very sensitive issue; you don’t sit at the dinner table and say, “Oh, you know, guess what? I was in the bathroom for four hours this morning!”
I’m really glad that I got to go away to college. I would so recommend it. My parents and my doctors talked about my not going away to college because I was going through a hard time, and they didn’t know if it would be the best thing for me. I’m so glad that I was able to do it. I didn’t get to stay for very long, but it was totally worth it, and I had a great time.
My friends at college will never understand my Crohn’s like my friends from high school do, because they didn’t see me through the diagnosis. I think it was different for my friends in high school who saw me when I was really sick and whom I called the day I found out. I think they understand in a completely different way. I just came to college with it, so I think sometimes my friends there don’t really understand when I get sick. Or if you asked them, they wouldn’t even know what kind of disease I have, whereas my friends from home understand. Eating is also hard, because we are on a meal plan three meals a day, seven days a week. Eating in the campus dining hall and figuring out what I could eat took some getting used to too.