I think it is really important for people who’ve been diagnosed to know that IBD is what you decide to make of it. There is a lot out there if you choose to get involved. If you choose to sit and be miserable, that’s normal for some of the time, because it’s tough having Crohn’s disease. But I think that it is really important to try to get into the fun of it. My friends rip out ads for medicines for Crohn’s disease for me and we hang them up on my wall. And I take my pill bottles and paint them to make vases out of them when I’m finished with them.
There are many stressful parts of this disease. I think it’s very hard for other people to accept that I have something wrong with me, because I look normal on the outside. It’s kind of a family joke now, because the day of my senior pictures I felt awful, but I put on makeup and sat there and had the picture taken. Now the picture will be something that will be in the album forever. But on that day, I felt so awful internally. It’s very stressful for me because it’s hard to convey to someone that I’m not feeling well based on my physical presentation, because I can fix myself up and hide how I really feel with makeup and clothes and stuff like that. It’s hard for me to really let someone else know that I don’t feel well, to say, “I’m really tired today” or “I have a pain in my side.” There have been a lot of people who have said, “Oh, you’re not sick– just suck it up.” People don’t understand, and it’s stressful to have to call in sick when people don’t believe you. I would much rather be doing whatever it is that I was supposed to be doing than feeling the way that I’m feeling. People don’t get that, so that’s stressful. But more often than not people do get it or they’ll cut me a little slack.
Doesn’t Stop Me
As a girl I was kind of concerned, because when you have problems with pooping and stuff like that, it’s kind of a big deal. I was worried about relationships with boys. I worried about functioning as an adult, and I was worried about being on my own, which I know is sort of a rite of passage. But now I know that you can totally date people and have a really great time and just do everything you normally would do. I have a colostomy, but I can wear blue jeans and t shirts and dresses, look nice and have fun, and do normal kid stuff. It’s really great, and I don’t really think of my disease in a way that stops me from doing things. It’s more like something you have to work around, but it’s not bad at all. You can do anything! It hasn’t stopped me, and I hope it doesn’t stop other people. I guess if I learned something it is that things can always be a lot worse, so you should just have a really good time with it.
What I Can Do
I can do anything—that is so corny, like from a Hallmark card or something but I can do anything, which is really cool. It is just the intensity that varies. I was on the tennis team in high school and in college. I’ve ridden horses since I was four. I just couldn’t do everything I wanted to do exactly as I wanted to do it. For tennis, I got really sick my first year in college, and ended up missing two months of the first semester, which is basically the whole thing. But the team was great, and they just let me show up when I could. It wasn’t a big deal when I missed it, because they knew I wanted to be there and it’s not like I was skipping. I’ve gone on trips I’ve gone overseas to Europe. I just got my own place, I bike ride and rollerblade. I can do anything that anybody else can do; it’s just that on some days maybe not to the extent that they can do them. If there is a bad day, you just wait it out, but there are enough good days that it’s worth it.
This doesn’t have to be everything about you. Obviously it is an awful thing to have to deal with but it can really be a good thing because you know what it’s like to be in this much pain and you have a better perspective on the world. Really just keep living the way that is right for you. Take it as a thing that you can share with other people.
Positives and Negatives
I really try to introduce myself first and my diagnosis later, and I try not to let it run my life. It’s something you come to terms with and gets better. I started thinking about it and if I really thought about all of the different ways that it affects me on a day to day basis or all the ways that it has affected my life in the sum total then… I guess there are always two ways to look at something. You can look at it like, “Oh yeah, it really negatively affected my life.” But then again I think it has affected my life in more positive ways than negative ways. It helped me become the person I am and I’m grateful for that. I have a new appreciation for life. People don’t appreciate life until something stops working. Like I never appreciated my intestinal tract until it was not functioning. So I’m really grateful that I can see that now. I have a new appreciation for things and for life. Also, as a result of my IBD, I have more compassion. I spent a large portion of my life thinking of Crohn’s as a negative and now I see some positives.