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Advice for Other Kids and Parents
Here is what I want to say to the parents: don’t baby your kids after you find out that they have IBD. They’ll get over it— keep telling them that— but don’t keep on babying them. It’s a good thing for them to have fun in life, and not to be held back on stuff. Sometimes activities might make your stomach hurt, but just let it go for a little while. If it hurts too much, stop, but you should have fun during your life. And eventually try to have a mix of fun, rest, and all that stuff. Watch your diet, listen to what the doctors have to say, eat healthy foods, take your medications, and your symptoms will slowly start to decrease. But really, I want to emphasize that you shouldn’t baby your kids.
One of the hardest parts after being diagnosed was realizing that it wasn’t going to be that easy and that I would have to go back to the doctor all the time and I would have to carefully monitor everything that I did and see if anything wasn’t working. After I was diagnosed it was really hard for me to decide how much of my life this would be. I didn’t want to define myself as being the kid with Crohn’s disease. So I would sort of just ignore it and pretend that it wasn’t really part of life at all. But at the same time it was really hard for me to recognize that I did have limits that not everyone else in my class or anyone else I knew had. Just to sort of pull back and think about myself for a minute was one of the hardest things; to make the distinction between not letting it rule my life and making sure that I still thought about it.
As a child with Crohn’s disease, I found that I got a little smothered when I wasn’t feeling good. It was actually more uncomfortable feeling smothered than it was being sick. And parents will do that sometimes. So it’s something that parents need to keep in mind. There needs to be a balance; they need to allow their kids to have independence, as well as be there for them.
Mostly, just know that as awful as it is, it will probably get better. Just don’t let it stop you and keep living your life. Realize that you do have limits but keep living your life the way you want and make sure that you are happy with the way you are. The big part is just not to let it define you but to incorporate it into you and make it a positive aspect of you. And do everything that you have always done before, but at the same time realize that you need to watch out for yourself a lot of the time too.
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.
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.
Act like you’re in control of it. If you saw me on the street you would say I look normal. I look fine; nobody would know that I have Crohn's disease. Most of the time I try to forget that I have it. But it’s nice to know there are people you can talk to; it’s nice to have a support network. An outlet or a hobby helps too, in terms of being comfortable. A really good technique for me was having people to talk to. But maybe it doesn’t come out as, “This is what happened as a result of Crohn’s disease today;” maybe it comes out as something entirely different.
Finally, as a seasoned IBD patient, I have the following advice to offer, as cheesy as some of it may sound:
It’s important not to get stressed out. Stress aggravates IBD a little bit, and it doesn’t help, so it is important to not get too stressed out about things like school or the SATs. I try to keep everyday stresses in the back of my mind. Make sure you’re not pushing yourself too hard. If I had to do it all over again, I would not go to school everyday. Don’t push yourself too hard. Understand, and be knowledgeable, about the disease you have. Even the little things you need to change do make a big difference. In the back of my mind, I always ask, “Do I have my medicine?” or, “Is there going to be a bathroom around in case I have a problem?” It’s definitely an adjustment— it definitely takes adjusting to be able to talk about embarrassing things that you weren’t talking about before.
Make sure that you realize what it means for you. Don’t try to shove it aside as something that you don’t want to recognize or deal with quite yet, because your first instinct is to just fix it and get it over with. Something that you have to embrace is that you’re going to be with this for a long time. You don’t have a choice really, so try to make the best of it and try to learn what comes along with it. You realize a whole variety of new things once you make peace with it and don’t try to fight it all the way.
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 right 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.
There may be rough times ahead, and sometimes it may seem like it’s hopeless, but it’s not. I thought it was hopeless and I would never get out of the hospital, but I did, and I’m so much better now. It’s made me stronger, and I feel better than ever. I would say to never lose hope; you should always hope for the best because you never know what will happen. It made me stronger on an emotional level. Ever since being in the hospital, I have been able to face challenges with more courage. I feel like I have a stronger attitude towards life. Sometimes I look at my Crohn’s as a test of my attitude and my abilities, and I just think that it made me stronger as a person.
I would tell parents not to really treat your children differently. Try to treat them the same as before they were diagnosed, instead of maybe asking them to do a little less because of their illness or not to work as hard. I have a couple of friends who got injured or have some things wrong with them, and their parents just ease up on them very much, and are okay with the fact that they do poorly in some things or don’t try very hard.
I think it may be more obvious what Crohn’s can take away from you than what it can give you. It made me a better person. I feel so lucky that I’ve had this experience because it allows me to relate and really emphasize with a whole group of people that I otherwise might not be able to relate to. Also, it’s become a part of my identity, and in that way it’s given me a lot because anything that becomes a part of your identity, for a good or bad reason, gives you something. I’m really grateful, because I’m happy with who I am, and so I’m grateful for everything that’s made me who I am, including Crohn’s, even if it has negative effects too.
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.
I think it’s important for parents not to push stuff on your child but to help them find resources. My mom found me a lot of resources but it’s always been up to me how much I want to use them. Try to find that balance—- if she found something, I’d give it a try, and that was the understanding. If I didn’t like it, then fine. But they really let me have control. All of that has to do with age, I think. But mostly I would tell parents to reall listen. And just like anything else, you just have to stick with your kid and understand that stuff can get hard.
Do everything you can to stay healthy, even it's uncomfortable. Even if it means not eating your favorite food or having to get tests or not being able to eat dairy, just do anything you can to stay healthy, because being sick is a lot worse than doing that. |
Babying
My Advice
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Copyright © 2005, Children's
Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. Updated November 12, 2004 |
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