It’s also really hard because it’s not the kind of stuff you can talk about, especially when you’re a 14 year old girl. You can’t say, “They stuck a camera up my bum to look at the inside of me.” So that part was really hard.
Sunburn in My Intestines
I don’t eat wheat flour, as part of an alternative treatment for Crohn’s. Usually that is the topic that comes up in for me; we’ll be talking about food and I’ll say I’m on a special diet. Usually I just say I have an allergy to food or I have stomach problems. And then if it comes up I pretty much just explain, “I have an inflammation in my intestines, so it’s kind of like a sunburn inside my intestines. It’s really red– inflaming is the second line of defense for the body. My body thinks that it needs to eat away my intestine, so it gets really inflamed. It makes it really hard for me to eat food.” That’s usually how I say it.
Being Comfortable
I don’t feel comfortable when I’m not near a bathroom that is clean and I know I can use. So I don’t like being in the middle of nowhere at all, or going hiking or anything anymore.
Don’t Feel So Well
It’s something I usually keep pretty private, but I do tell some people. I’ll say things like, “I don’t feel so well. I don’t think I should go with you guys right now.” And if they ask me why, I say my stomach hurts or something like that.
Definitely the worst problem I’ve had to deal with because of my colitis is hiding it from my schoolmates and friends. As you can imagine, the other fourth graders were curious as to where I’d disappear to once a month, and I had no idea what to tell them. I finally told three of my friends about my colitis when I was in sixth grade, during a sleepover at my best friend’s house. I told them that I had an inflammation of my large intestine, but that was pretty much all I said. Throughout junior high I told a couple more of my friends, and continued with my monthly visits to the doctor. It got harder and harder to drive all the way into Boston once a month and miss school, and my friends still wanted to know where I was going.
Explaining Crohn’s to my Friends and my School
I explain it a little bit, but not in full detail. I wouldn’t go into detail about symptoms because they’re kind of embarrassing, stuff that you don’t really talk about every day. I would probably just say, “It’s an intestinal thing;” I usually give them a little bit of an explanation. At first I didn’t tell anyone, though; at first it was more embarrassing.
Two years ago, during my freshman year, I was out a lot doing tests, but I would still try to go to school every day even though I was really sick and had really bad stomach pain. I didn’t really tell anyone about it– I kept silent about it. But then I started to get better, and when you learn more about it, you’re not as embarrassed about it. Basically, it was really important to tell my teachers, in case I ever had a problem. And when I have to come to the hospital, it is important to let them know, so that I can make up homework. It was really important at first, during my diagnosis, because I was really sick then and I had to leave the class a lot. I also got anemic from losing so much blood for such a long time– I would be tired a lot. It’s important to let your school know, so that you can try to work with them.
Openness about Crohn’s
I’m much more open about it now than I was. It has always been a really big part of my life, and a huge part of me– always has been and always will be. In junior high and elementary school, my best friends and the teachers knew about it because I’d often have to take a lot of time off to go to the hospital for tests or I’d get sick. Now I’m really open about it, and I don’t care. I was on the tennis team at college, and I said, “Look guys, this is what it means. It’s not contagious or anything, but I have it, and I might miss practice or something because I can’t get out of bed. Please just know that I do care and I do want to do it.” It’s really not big a deal, so I just tell people.
I think it can be harder in relationships, like with boyfriends. I’ve only recently started dating. I had a serious boyfriend who I told about it, and he was totally cool about it, which was a relief. I don’t know if I didn’t start dating until much later in my life because of Crohn’s disease or because I didn’t know how the opposite sex would react to it. My guy friends in high school knew about it, and they didn’t care, but it is different when you’re having a relationship with someone on a different level. But my first boyfriend was really cool with it and then the guy I dated since then has been really cool with it. When you’re more intimate, it’s nice to know they don’t care about it.
Reactions
I don’t tell a lot of people, but my friends know about it. I don’t say anything unless I really know the person. It’s something that I don’t want to have out in the open unless I’m trying to help someone else with Crohn’s or something. I don’t usually talk about it that much.
I remember when I told my friends, I told them pretty much everything. I told them about the disease and the symptoms. At first it was kind of uncomfortable, but after a while it felt good to let it all out and tell someone, because I needed someone to talk to about it.
There was usually a good reaction to it; I usually got sympathy and stuff. There was this one kid who had the same condition as me– he was a friend of a friend, and I talked to him about it. He was scared about the whole thing, and I was trying to calm him down and explain the disease. It seemed like I scared him more, and I felt bad. But that’s pretty much the only case like that. Otherwise people have been pretty good when I tell them about it.
Reactions
I have played scenarios in my head, and I always try to be prepared. I like to think along the lines of how it would be if someone didn’t accept it, but that hasn’t happened so far. Some people have been cooler about it than others. Most people are great about it, but some people are cool about it because they know that you’re a good person and everything is all right, but they’re still kind of grossed out by it. It is kind of an intense illness; I mean, all illnesses are intense, but I have a colostomy. I got it when I was eight, so I’ve had it for thirteen years now. Most people are really cool with it, but sometimes it takes a little while for them to adjust and become more okay with it. I mean, it sticks out, and you poop into a bag– that’s not normal. No one has been unhappy about it or mean about it, or not accepted me because of it, but some people have had to take a little longer to adjust to the fact.
Telling My Friends
I just try to avoid topics concerning the illness. If we’re discussing illnesses that are similar to IBD or Crohn’s, I try not to join in the conversation. I feel a little hesitant about discussing it in classes or even around my family, a little bit. I haven’t really told any of my friends. I basically tell all my teachers and principals, but not so much the kids. Those that I do tell are okay with it and don’t discuss it either. I just told them about the surgery and what I had fixed, and how I was diagnosed with Crohn’s disease. I told them it wasn’t a really big deal; all the medicines kept it dormant. I haven’t seen a change in relationships or how people treat me.
The Girl with Crohn’s Disease
One of my big things about this from the very beginning was that I didn’t want to be defined by my Crohn’s disease. So I really just sort of acted normal a lot of the time– I’m an athlete and I participate in a lot of clubs. I really have tried to just sort of be normal. I didn’t tell anyone at all until this year. So I went all through fifth, sixth, seventh, and eighth grade not telling anyone. This year I finally told one person who was a really close friend. The hardest part was that I always knew that they were my friends, so they would support me, but I never wanted to be in their minds as that person with Crohn’s disease. So it was really important to me to just be myself and then tell them afterwards. Once I told that one friend, I realized that they really would see me as just me and not as ‘the girl with Crohn’s disease,’ and that really helped me. Then my English teacher assigned a personal narrative and I decided to write about my experiences with Crohn’s. And reading it to my English class I realized that they didn’t treat me any differently at all afterwards, they only treated me with more respect. People were more understanding than I had ever expected. This year has sort of been a transition year in terms of becoming more open about it.
Variations
It’s a hard disease for people to understand because there are so many variations of it. It’s not like you have Crohn’s Disease– this is what it is. There are so many different many variations of it, so many different things under it and so many different ways it can affect you. It is sometimes hard for people to understand; they don’t really get the whole thing of it. As long as they try to understand what it is and how it affects you then it is good.
College
I think that I started talking more about my colitis in college. Once you get into a tight knit group of friends that you’re with all the time, they realize more and more what is going on in your life, and I felt more comfortable saying, “Look, this is what goes on.” I realized how many other people are affected by colitis, Crohn’s or other chronic diseases. You realize that there is a support system that nobody really knows about, because they keep it all in and don’t want people to know about it. But once you start sharing you hear, “Oh, I know someone with it,” or, “Oh, I’ve had something similar,” and it’s really a big difference; it’s really helpful. It definitely made my life much easier once I started telling people, because I felt much more comfortable about myself, and more comfortable with what I was doing. You find more and more people who know somebody with Crohn’s or colitis or have it themselves, and who really know what they’re talking about, and it’s really nice when you can actually talk openly about it with somebody. You have your own support group away from family.