Not receiving any emotional support

[Ben.hart]

I was diagnosed with crohns about a month ago and the last few weeks has been really hard with regard to the physical symptoms. Im 16 and I've been bed ridden a and almost had to stay in hospital, even when I'm on prednisolone. I've also missed school due to the pain. The thing that's really got to me though is the lack of emotional support from everyone around me. My parents are there for me but all they keep saying is they are out of their depth, they make me feel worse and I can see my pain is affecting them which upsets me and puts pressure in me to appear well. I feel very alone much of the time. My friends and girlfriend really don't seem to care. I've missed loads of school but rarely get any communication from my supposed best friend or my girlfriend and this really gets to me as I know if it was the other way round I would be there for them all the time. They don't seem to understand what I'm going through, how severe the pain is and that it is really getting me down. On the occasions when I am in school people tell me I look fine so assume I am fine. I don't know how to let them know how I'm feeling or how to explain the disease to people, they don't understand it is an 'invisible illness'. Can anyone help me explain to people how I feel

 

[Jennifer]

Hi Ben.hart and welcome to the forum! Love the avi btw.

This issue pops up a lot on the forum unfortunately. Its not that they don't care, its just like you said, invisible. There's a lot of great info in this thread if you care to read through (its less than a page so far): http://www.crohnsforum.com/showthread.php?t=42998 Everyone is thrown out of their element before and after diagnosis but you will all learn and understand with time. They will learn about your illness and will do their best to understand and you will learn what they go through watching someone they love suffer while they are powerless to help. Both sides of the coin are very frustrating. Remember that you're not alone, we're all here for you.

My advice to you is to not try and appear well in front of your parents. Since you're a minor its important for them to know how you're feeling as they are kind of in control of your medical care.

Again welcome to the forum and keep us posted on how you're doing both physically and emotionally.

 

[David]

I feel you buddy, I really do. It's so hard when people close to you don't provide emotional support. I wish I had some advice but I don't. Crabby had some good advice and I'm sure others will as well. Just know that we're here for you.

*hugs*

 

[Ben.hart]

Thanks guys. It's nice to know I'm not alone but I still would like the people around me to understand better how I feel. Do you know of any leaflet or something I could give them that doesn't give too much detail but really let's them know what I'm going through. Appreciate your help

 

[Jennifer]

This link was posted in the link I gave you and has a lot of good info: http://www.ccfa.org/what-are-crohns-and-colitis/what-is-crohns-disease/ Also here's some patient brochures from CCFA you can download and print out: http://www.ccfa.org/science-and-professionals/programs-materials/patient-brochures/ Hope those help.

 

[Ben.hart]

Thanks for your help