Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.

Haven't told my friends. Help?


Thu, September 03, 2020 8:00 PM

Hi. I was diagnosed in 7th grade and am now just starting high school. The doctors didn't help me for a little while before I was diagnosed. I was lucky to not have diarrhea but I had bad stomach pains and I stopped growing. I weight 55 pounds at the beginning of middle school. My family has always been small so the doctors mostly ignored me. When I was diagnosed (finally!) I was mostly shocked. I couldn't really think about the fact that I had a chronic illness. Mostly I was mad at the doctors for not helping me at first. I now have Remicad treatments every 7 weeks. So now that I'm starting high school, it occurred to me that I have never actually told my friends about my chronic illness. I am just so scared that they will treat me differently. They already treat me like I'm younger than them while in reality I'm the second oldest of my friend group. I'm not even really the shortest anymore sense I've grown 4 inches in the past two years. Anyway I need advice. If someone out there can realate please tell me. I haven't actually met anyone else with an IBD so it would be nice to get advice for someone who kinda knows how I feel. If you can give any advice on how to tell my friends about my Crohn's please let me know! 
Thanks!

FPO SmallGurlat14
Joined Sep 3, 2020

Fri, December 18, 2020 1:08 PM

Reply posted for SmallGurlat14.

HI! I am a freshman in college but I was diagnosed in high school. I think its all about your mindset. Having IBD is not something to be ashamed or embarassed of. It is something that is a huge part of your life now. I find that people our age have trouble understanding the severeity of what we are going through. My recomdenation is to be open with your friends and help educate them. I think if they have a clear understanding of whats going on with you, it is easier for them to symphatize. If people are rude about it, then it is a reflection on them and not you. Try finding a support system of friends that build you up and don't tear you down. 
 
YOU GOT THIS!!! There is a great community here so always reach out if you are struggling.

-Kate Gilfillan

FPO kategilfillan
Joined Dec 18, 2020

Tue, December 08, 2020 7:06 PM

Reply posted for SmallGurlat14.

I was diagnosed with UC at 17 (1989)...yes I am old.  My son (15) had a severe and sudden onset on Saturday and over an insane 30 hours we took him to the ER, located a really good Peds GI doc and had an upper and lower scope done to provide an initial diagnosis of UC.  The biopsy results have not come back yet, but his symptoms are telltale.  He would normally need to deal with telling his friends during this flare, but because we are all e-learning he has some time to figure it out.


As for me, it was obvious to my friends that I was sick and it was easy to explain it to them.  They would still tease me when I had to sprint to a bathroom or ask me why I had the water running in the sink anytime I had to go at a friend's house.  Obviously I was embarrassed and because it was often "explosive" I wanted to cover up the noise.  I also became a comedian and suggested funny nicknames for my friends to call me like “semicolon”, “sir poops a lot” and I used humor to deflect the initial stress.  Later on, I really just did not give a damn and I got over my anxiety and I was very upfront about it.  In fact, I told my wife about it on our first date.  She was taken back a bit, but it had become part of me and it was something that built my character and in the end I became proud of my ability to live with a disease that 99% of the world would crumble under.


I am 49.  I got UC at 17.  I had UC for 14 years until it became so bad I had a total colectomy and I'm successful living with a j-pouch.  This IS NOT A DEATH sentence.  This is something that will make you more resilient, tough and determined. 

FPO rhornstrom
Joined Dec 8, 2020

Wed, December 02, 2020 8:44 PM

Reply posted for ILoveDogs56.

Sorry I just saw your response. I understand the annoyance of when someone treats you like a little kid. I was the shortest person in my grade for all of middle school and I hated it when people treated me like a little kid and I was just the cutest and the most innocent thing ever. Also if you ever want to take this conversation offline them my email is bandnerd1260@gmail.com but if you want to keep it online that's fine too. 

FPO SmallGurlat14
Joined Sep 3, 2020

Tue, November 17, 2020 9:51 PM

Reply posted for SmallGurlat14.

Hi I just saw your post today! Sorry! I just started middle school so I've been kinda busy and I forgot to check here. But I honestly was happy and surprised that you replied! So far, I have noticed that most people don't really take a kid with this very seriously, I guess thinking that they are just a kid and are always energetic anyways...(obviously not true with this particular disease). Thank you so much for responding and I would LOVE to talk with someone like you who understands more!smiley

FPO ILoveDogs56
Joined Oct 14, 2020

Wed, October 14, 2020 8:47 PM

Reply posted for ILoveDogs56.

Hi! Even though we are different (but close) ages, I can relate. I understand that being diagnosed with a chronic illness can be crazy and defiantly a little scary at first. If you ever need someone to talk to or if you just need a friend you can talk to me!

FPO SmallGurlat14
Joined Sep 3, 2020

Wed, October 14, 2020 7:45 PM

Reply posted for SmallGurlat14.

Hi!

I wanted to say even though we are different ages, (I'm 11) I wanted to say that I TOTALLY understand the feeling of not knowing who to tell. I told my two best friends and my family obviously but I have a lot of other friends who have NO idea. I was just recently diagnosed in July. And I also want this to maybe be found by someone else close to my age or any age with Crohn's disease, because I am still very new to this and need someone who understands...

FPO ILoveDogs56
Joined Oct 14, 2020

Mon, September 14, 2020 6:01 PM

Reply posted for SmallGurlat14.

Hi! First off, I just want to say I'm really sorry to hear about your diagnosis. Crohn's disease is no fun, and I'm sorry it took so long for you to get diagnosed. That must have been really frustrating. My name is Mattie and I also have Crohn's - I'm 22, and I was diagnosed when I was a junior in high school. Although I was a little older than you, I can relate to what you are going through in deciding how to tell your friends. It's scary to be vulnerable with others and talk about such a poopy disease (pun intended!). I would encourage you to find one close friend to confide in. Hopefully talking with one person, maybe your closest friend, will help you feel more comfortable around them. Take your time with telling your story - it's YOUR story, and you shouldn't feel rushed or forced to be vulnerable with anyone. It took me a few months after my diagnosis to feel comfortable talking about what I was going through. You are not alone!

I'm here for you if you ever want to talk about your symptoms, what you're going through, or anything else that's on your mind. Wishing you well!

Mattie

FPO jarofclay47
Joined Aug 22, 2019

Related Topics

Crohns Qs new hair loss a...
Author Image ghand17
Joined Oct 23, 2022

I am also newly diagnosed. I was put on Inflectra ....

read more

Joint pain
Author Image AbbyF
Joined Jun 29, 2022

Hello, I'm newly diagnosed with Crohn's an....

read more

Extreme Abdominal pain
Author Image JackieBosco
Joined Oct 3, 2022

Hello. I was diagnosed with Crohn’s about tw....

read more