Crohn's Disease Forum » Support Forum » Partners, Family, Friends & Caregivers » Unsupportive family and friends :'(


12-05-2014, 05:07 PM   #1
luckylaurax
 
Join Date: Dec 2014
Location: California
Unsupportive family and friends :'(

Hi, I'm 19 years old with severe Crohn's Disease and live with my parents, currently attend university. I've been in a flare up for the past 2-3 months, now on remicade. Steroids have bloated my face up and I've put on 3 stone and look quite ugly. I feel so ill all of the time so had a lot of time off uni, my friends don't bother to visit me anymore now I'm sick.

My best friend who does visit me from time to time quickly changes the conversation if I talk about my health as I think she's tired of hearing about it. I was supposed to be going to cinema with her but I was in extreme pain and thought I may have to go to hospital so texted her telling her and she just put "Alright" which upset me as she didn't bother asking how I was.

I just feel like a big burden to everyone most of the time Does anyone else feel like this or have any advice ?
12-05-2014, 06:10 PM   #2
Cat-a-Tonic
Super Moderator
 
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Join Date: May 2010
Location: Madison, Wisconsin

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Hi, welcome to the forum. I'm so sorry your family and friends are being unsupportive. First of all, I think you should read at least the first post in this thread: You Are Not a Burden!

I'd also like you to read the Spoon Theory. It is an essay written by a lady who has Lupus, but a lot of the things she says are applicable to many chronic illnesses. It's an interesting way of explaining to healthy people what it's like to have a chronic illness and to live with that every single day. Perhaps if you share it with your family and friends, they'll have a better understanding of some of the things you're going through.

You are absolutely not a burden. You didn't choose this - nobody would. You're doing the best you can in an awful situation. It's sometimes difficult for healthy people to grasp what it is like to live with a chronic illness, particularly if it's an "invisible" illness such as Crohn's where the inflammation is internal and they can't easily see that you're ill. I've experienced extremely unsupportive family members as well and it's an added challenge to an already challenging situation, so I really feel for you. Is there anyone you can talk to, anyone supportive in your life? If not, are there counselors at your university, or could you look up a local Crohn's & Colitis support group? (I'm not in the UK, but if any UK members see this, could you please give some guidance as to how to find local support groups?) Hang in there. I'm glad you found the forum because everyone here is very supportive!
12-05-2014, 09:20 PM   #3
Axelfl3333
Senior Member
 
Join Date: Mar 2013
Location: Coatbridge, United Kingdom
Crohns is such a nasty illness but there is so little public knowledge of it I,m sure your friends don,t know how to approach it and until I got saddled with I,d never even heard of it!i,m sure things will improve for you and your friends will become more understanding.all the best good luck.
12-14-2014, 11:06 PM   #4
Malicious
 
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Join Date: Dec 2014
Hi luckylaurax!
I'm in exactly the same boat as you. I'm 21, and I was diagnosed in October this year.
My friends, including my best friend, find it really difficult when I have to decline going out places.
In fact yesterday I couldn't go to a movie night because I was sick. I texted my best friend and she still hasn't replied. Even after I texted her this afternoon saying sorry again.
I'm starting to wonder how much longer she'll put up with me, till she just doesn't bother anymore and I think that's going to happen soon.
It's really hard for others to understand how Crohn's works and the different ways it affects people.
Try and stay positive! I'm trying to, and I know it's really hard but I just wanted to let you know that you're not alone in this and I know what it feels like.
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