Post Edited (Margie11) : 1/13/2009 5:45:51 PM (GMT-7)
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.
Thanks for the kind words....certainly most of us hate the extra attention this disease can bring because it means we must be really sick if someone is helping us....
but there are many of those who wallow in the extra attention illness can bring....heck there are even folks who make their children sick just to get attention (I think they call it munchousen disease..or something like that)
Good thing there are more of your type than their type.
issues occur regardless of the sex of the person...it happens with wives as often as it happens with husbands...I tend to feel that on this site we hear more of the female perspective because ...and this is only an opinion...there seems to be more women than men on here.
I am blessed with a very understanding family, supportive friends and a wife that shows greater strenghth everyday.
Fact is that one of my greatest issues with my crohns is how it affects my wife....especially after the recent episodes of blockage and the resulting surgery....that really upset her. She is not the type to dote on me or coddle me but she does worry and she does internalize that stress.....I/we (meaning you and me) know exactly how we feel....we know the depth of our pain...we know what we can do that day, what we have left in us. We know if we can amke that dinner or do that extra chore. We know if work that day really drained us or not. BUT!!! Our spouse usually don't...they may have an idea but they don't really know...and since they don't really know they usually imagine the worst and it hurts them...it tears them up. And that my fellow sufferers IMO is one of the main causes of our spousal issues...that stress has to manifest in some way and anger/misunderstanding is probably most common.