So you've been diagnosed with Crohn's, Colitis, or IBS. How do you explain to your friends what that means? It's not easy, so here's a few to try. Send me the methods you've tried and I'll post them here.
Matt the Webmaster: I tried the honest approach: my intestines swelled shut and now I can't have milk products. This only confused most people. Then, I tried explaining that I couldn't eat milk, chocolate, fried food, etc., and this only made them feel sorry for me. Running out of options, I made copies of the information brochure I got from the hospital and gave one to anybody who really wanted to know about Crohn's. I found this to be the best approach, and now I only have to answer individual questions about the disease, instead of "What's wrong with you?" Another time I gave some Ensure to my friends to try so they could taste first-hand what I had to drink. It wasn't a popular drink, but I think it explained a lot more than words could have about Ensure. The best metaphor to explain Crohn's with is to compare it to the movie "Alien". Think about it for a moment =) ...
Steve: To explain to someone about why I don't feel well, I just say I have problems with my stomach, at that point most people drop it, if they want to know more, I just briefly explain to them what it is, usually they have heard of it or colitis.
Mike: I really did not need to talk to my friends. When they were at the hospital they said that that was a pretty good indication that something was really wrong. I was a very bad sight for my friends to see. I really wish that they did not have to see me that way. Anyway, When they saw me in the hospital they realized that my pain was not just your average stomach pain it something really important. Then when they started to see all of the pain that I was going through they realized that I was telling the truth. From then on out they know now that whenever I have pains or a "BAD DAY" that I'm not messing around I really need to rest and take a breather. The way I feel about it though is that if you or any person has a friend, then they should really understand. Sure there are the kind of friends that are jokers and kind you on, but eventually they understand. Then sometimes there are just those kind of people that really just will not understand. If this may be that they do not want to, than they are a real friend. If you have this problem than you will know who are your real friends and who are not!!!!
Christi: When I told my friends about me having Crohn's.. I just told them, the reason I couldn't have different foods like lactose, and fresh veggies was because my digestive track in the small and large intestines " was like a sun burn on the inside". that seemed to make the m understand how come I have stomach pains and other things... I also gave them a pamphlet I made up on my computer. I think that made them see that this was a kinda serious thing. and those that didn't understand I kinda left them in the dust.
Seth: When I was on Prednisone and was rather large, our scout troop was on a canoeing trip. Someone asked me why I hadn't lost the baby fat on my cheeks yet. I told them about my condition with Prednisone and they chuckled and said, "Yeah, right." This was the way things continued for a year while I was on Predsinone. People were constantly puffing out there cheeks and laughing at me. I recommend not saying anything but then only coming straight out with the truth if you think they can handle it. And these people weren't some uneducated dimwit my age or younger they were 17 and 20. Something to remember is... There is life after Prednisone.
Holly: Tell people who aren't familiar with our terminology that Crohn's is like bad plumbing and sometimes the pipes get clogged. The pipes have to be reconnected sometimes.
Aliyah: I kinda had to tell some of my friends because they would ask why I had to drink the Ensure and Resource.
Sarah: I didn't have to tell my friends, they were in the hospital room with me when my doctor told me what was wrong, and the doctor had to explain everything because I had never heard of it either. I was on Prednisone for a few months but I didn't swell up. I had lost so much weight on the liquid diet that I just looked normal again with the steroids.
Amanda: I just said to my best friend that I have something to tell her and it is going to change my life. She understood because I have talked about it before because I am the 4th in my family to have it and it is just a major part of my family. I only told my best friend because I figured my other friends did not have to know because they couldn't care less. If I ever to tell someone that is not familiar with Crohn's the response I usually get is, "Are you going to die." I just laugh and say no. My mom might tell a few of my friends parents and I do not like that because I feel they do not have to know the private details of my life.
Chris: Well it was very hard for me...I am on tons of medication... and have been on Prednisone for over a year.. and have a fistual.. that ruined my life worse than Crohn's... mostly people freak out when they see me taking all these pills....or me the best solution was to take my pills in private like a bathroom...and if anyone asks what is wrong with me I just say that I have something like ulcers in my stomach...or I don't say anything...for me it is easier to just keep it to myself and not say anything.
Sandra: The easiest way to tell people about Crohn's is to simply say, "My intestines don't work and they hurt a lot so the doctor is going to take them out." If people have heard of Crohn's, they will recognize this explanation and ask if it's Crohn's or Colitis, if they haven't heard of it, well, there's no need to go into detail.
Jeff: So far, of the few friends that I've told, I've found that the best approach is to be direct and honest. We're seniors in high school, and if you have the maturity to tell them the plain, medical facts, then usually they can respond with enough maturity and respect to understand. I tell them frankly that I have a diseased colon with many ulcers that have been causing me severe stomach cramps and indigestion for over a year, and it took this long to finally figure out what it was. If they really want to know, the reason that I was in the hospital on Monday was so that I could have a colonoscopy, and I was out on Tuesday because my body was just starting to get used to the new drugs that I have to take. I have even told one person that I need to do enemas, and this person (normally very immature) acted well enough to have sympathy and realize that it's nothing that's *my fault*, and that what I'm doing is to make myself feel better. I have found, through other experiences, that if you lie or twist the facts around, people get confused and worse rumors pop up, which in the end can be much more emotionally traumatizing than if one or two kids makes fun of you for your condition. Besides, real friends wouldn't do that anyway.
Stephanie: I wrote my friends letters and emails as I just wasn't strong enough to say anything face-to-face or over the phone. Some live in different states. I got letters, emails & phone calls back. AS the questions have gotten harder to answer or they want to know more I give them the TWC site or another site which is fantastic. Explains everything from when it started, what happened, includes medical stuff, feelings at the time, and today. Its a down to earth way for someone to understand just as this site is.
acallby: What I've found works well when describing the illness to people when they ask is basically that "My Digestive System is trying to digest my Digestive System". People normally get the gist after that.
Dan: I feel that telling your friends about Crohn's disease is the hardest part. People don't understand when you to try to tell them you have a problem going to the bathroom. When you try to explain it, I found that just saying I cant eat this or I can't do this because it hurts me and I don't feel up to it is the best answer. Trying to not tell your friends about Crohn's disease is not the way to go. Your friends should know. But my friends found out I had Crohn's disease in 4th grade when I went in to the hospital. The teachers told (tried to explain) what was happening to me to my friends. When I got out of the hospital, I found that giving your friends some cool info on the subject worked. To tell your new friends in high school about it, I found that just telling them the truth about it or giving them a pamphlet about Crohn's disease was the best way. I hate Crohn's disease so much ...it gets on my nerves.
Lynsey: I only recently told my friends about my Crohn's,
last week when they started to ask me why I missed school so much. I have had Crohn's
since I was about ten. I'm 16 now and this is the first time I have told any of
my friends. I The reason I hadn't told anyone was I wasn't sure how they
would react. I was embarrassed and I wasn't sure how to explain it to
people. My excuse for the hospital visits, tube feeds and other food supplements
was that it was because I was so small and later on I expanded the explanation
to I couldn't absorb food properly. Eventually last week I told one of my
friends all about it, even telling her the name (which was quite a big step) and
I'm so glad I confided in them about it. That friend explained it to the rest of
my friends the next day and they were brilliant. They totally understood and
although they had some questions, it was such a relief. Now when I have to take
day off school they understand and I don't get called a "skiver",
which is great. I just told the truth eventually and it really worked for me. If
they are real friends they will understand and they will be glad you trusted
them
enough to confide in them.
Matt J: When I was at home, everyone knew that I was sick, even before I was diagnosed. My dad is a pastor, so I had many churches and people praying for me and they all wanted to know what was wrong. I have no problem telling people, I didn't do anything to get this ailment and it's nothing to be ashamed of. I just tell people that my body is attacking my digestive tract, that somedays are good and somedays are really bad. I tell people that Crohn's causes severe pain and I take all my pills for a reason. All my friends at school (college) know and I find that helpful because they are all very supportive and very concerned. It's nice to have people around me that really care about my health issues. I figure it also gives them some information that they can carry with them the rest of their lives.
Pete: When people or my friends ask me what CD is I simply tell them that when they eat their food goes to their stomach and than to their intestine which is twenty feet long. Inside their intestine they have things that fight off germs to keep them healthy but my body doesn't, so if I eat certain foods or drink alcohol I get really sick. They seem to understand this really well and it's a great way to say no to alcohol. Just say you have CD and you can't, and then when they ask why you can educate them.
Elizabeth: I'm very lucky that I go to a school where people are very supportive of me and my missing school. A few people who actually used to be really good friends haven't been, and say things like "You're never in school, do just not like it or something?" But, it kind of makes me irritated but also I feel sorry for them because they are how they are. When I first found out I might have Crohn's I told one person, who told a few more, and so on. But they really didn't know what it was. My science teacher "Mama K." was quick to give some explanations to the class as to what was happening in my screwed up intestines. One friend even did research on-line and gave me this web-site (thanks Becca!) I also have Siliac's which means I can't have wheat, so when I do go back to school, I have no idea what I'll eat! )=
Jessica: Right after Christmas, I started loosing my hair. Whether it is from the medication or from malnutrition, no body knows. But anyways, within a month, I had lost so much hair that I had a big bald spot. There was no way that I was going to go back to school bald, so I got special permission to wear a scarf or hat in school. Up to that point, I had not told anyone about my illness, even my friends. I thought they'd think I was a freak, or something, especially since I was loosing all my hair. then one day, I was stopped in the halls by a teacher who demanded I take off my hat even though I had a special permission. It was at that point in time that I decided to let my friends know about why I was loosing all my hair! Instead of treating me like a freak, they were so understanding, even making jokes about how I should wear a sombrero to school one day just to annoy that teacher! Not only were they totally cool about it, they even all went out shopping that week, and got me tons of the coolest scarves and hats! It was totally unexpected, and I was so amazed that they cared that much. Then, when I had to have a colonoscopy done, one of them called the recovery room, just to see how I was doing! I was under anesthesia so I couldn't talk, but the thought was so nice. Through this awful experience, I have learned exactly how great true friends are. They are always there for me!
Mona: I tried avoiding telling anyone that I had Crohn's Disease, but when I would really get sick and go to the hospital people started to wonder what was wrong with me. I would just tell them I had ulcers in my stomach... later I came clean with some of my close friends and I showed them a web site that explained everything, from the symptoms, to what foods I can't eat (alcohol is one major one to avoid, trust me!!). they finally understand now. they make fun of me from time to time, just joking around. but I'm glad I told them, cause now I don't have to hide when I take my medications and I don't have to come up with an explanation why I can't eat or drink and why I get so sick I have to go to the hospital. your true friends will help you out, and they'll make sure you avoid the "forbidden foods" and that you take all your meds.
Diana: My friends were the one that were worried about me then anyone when I couldn't eat but a couple of bits of food then getting stomach cramps and have to run to the bathroom. At first. my friends thought i was throwing up my food every time I went to the bathroom but, I wasn't. they came to me and asked me about my problems and about my weight loss. and they are the ones who help threw it the most.
Raj: I suffered chronic pain for four years after my doctors removed my appendix, and then immediately after had to remove abscesses. They didn't realize that I had Crohn's. My friends all knew that something was wrong already, and so now we just have a name for it. I had surgery in march when I was diagnosed to remove about two feet of small and large intestine. I feel better now than I have in years. my friends got me through the rough times without knowing what was wrong. Now we know.
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