I keep reading posts like this and really find it amazing. Amazing that people really think we have mental control over the disease....and amazing that so many do not discuss or recognize the greater issue(s) that this represents.
If you are one of those people that faces this kind of issue on a regular basis then maybe it is time to take a different tact with how you approach it. Has anyone asked themselves about how does this very close friend or family member think this...and what does it say about how they percieve me as a person if they think think this? Is it because they don't understand the disease and in most cases of crohns they see no outward physical damage like they would if it were a lost limb, tumors, heart disease (lack of color and shortness of breath)....
Or is that they understand the disease but don't know how to deal with it...and maybe that is because dealing with it invloves dealing with a very personalaspect of your life...the big taboo of poo that no one likes to talk about.
Thirdly...is it possible that you have used the disease to your advantage? Hidden behind it to avoid unpleasant things or to get attention? Or do you make every conversation and every event come back around to you and your illness or illnesses? Do you end each conversation with "YOU WILL NEVER UNDERSTAND HOW THIS DISEASE MAKES ME FEEL".....or "HURT"......or "MANY OTHER THINGS".
IMO the only way to really deal positively when this type of reaction occurs is to find out the root of problem and then deal with that. It is a type of relationship dysfunction that probably has a cause that may have absolutely nothing to do with you or your disease. There could be guilt because there is so little that can be done by the people who love you. There can be guilt at being so overcome by a disease that this person never thought would last so long or be so consuming. Does a parent worry that they gave you the disease....does a sibling feel guilty that you got it and they didn't....does your child worry that they will inherit it???
I see complaints about family who don't believe you are sick, or don't believe you are unable to do more...my first question in all of this is to find out why someone doesn't believe me....and if it is a case where they think I bring it on myself then I want to find out why they think I would do such a thing....
Just thinking that this is a case of the other person being selfish or self centered is not going to change hearts or minds nor will it find a solution to the problem.....If someone I really love and respect can not find compassion and understanding for something as serious as this disease and how I have to deal with it then the problem is bigger than them just being a jerk (and if they are someone you really love and respect then it is very unlikely that it is something as simple as them being a jerk).....and if it matters to us then we owe it to uorselves to go find the answer. Along the way we may solve more than one problem.
dx IBS 1999 UC 2000 CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose one shot every week. Also nightly dose of mesalamine.
Surgery Nov 4th, 2008 removed 30 inches of small bowel.
Crohns is currently active and has been since April of 2005
52 yrs old