View Full Version : They just don't get it!!! Ugh
09-04-2009, 10:46 AM
I was diagnosed on July 10th and people keep asking what is wrong with me. Seems like if you don't have a cast on your foot, blood running from your nose, a black eye or stitches somewhere on your body, that you are fine. How in the world do you explain that your pelvic area is on fire, it kills to pee, you don't sleep because you have to pee or just can't get comfortable, etc, etc? I know people mean well, but how to you give an honest answer to such a sensitive subject. I would like to state it just as it is, but seems that might not be the most "politically correct" way to do it and I am just not in the mood to be nice at the moment!!!!!!!!! Guess I need to put ice on my head as well as my crotch!! HA HA
09-04-2009, 11:40 AM
I have found that most people are able to absorb a semi-technical explanation, and if I am straightforward about certain medical details they tend to take it seriously. I don't tell everyone, and just let my instincts guide me as to whether I feel comfortable sharing the information at any given time/with any given person. I simply say I have a disease called Interstitial Cystitis that involves the degradation of the bladder lining. From there it's easy enough to explain, in a simplified manner, about the low-acid diet and why I'm not taking them up on their offer of coffee, tea, lemonade or lasagne. Some people get it right away, others may need a second explanation down the road.
09-07-2009, 12:06 PM
Some people get it right away, others may need a second explanation down the road.
And some just aren't ever going to 'get it'. (Seems I have quite a few of those!) I think the trick is in distinguishing which type you're dealing with then let your insticts guide you like goldfinch mentioned. If it's the aren't ever gonna get it group, I've learned not to beat my head up against the wall. :headbang:
09-21-2009, 03:35 AM
I know what your talking about. When you tell people that you have IC they just look at as to say is it in your head?:bonk: I just love it when a family member brings over something that you can not eat. And you have told this family that I can not eat that.:cussing: You just go in the other room and cry. WHEN WILL THEY GET IT.:rant: I play on a golf league with my hubby. Lucky for me my URO nurse is on the same league. We were at a golf pitch in and my hubby told me to not eat that. One of the golfers wanted to to know why? My nurse told her that I had IC. Never herd of it. and she says is it painful and will it go away? My nurse said YES ITS VERY PAINFUL!!!! and NO IT WILL NOT GO AWAY:mad: I wish the world knew about IC and what it is. Just like cancer.
09-21-2009, 04:48 AM
Sometimes printing out some information from this site will help family understand.
09-21-2009, 05:15 AM
I have found that the down and dirty version is the easiest way to avoid the long drawn out details of this topic. I tell women that it is just like having a UTI all the time and it will never get any better. For men I tell them it is like when they get kidney stones and it will never get better. Now I know that IC is really more than this but it puts it in terms that most people can relate to with something they have experienced. Then if I am inclined to do so I will explain in more detail but this way it gets the point across without giving too much detail especially to strangers or people that I don't know well enough to tell my complete medical history to!
10-03-2009, 10:18 AM
I have had trouble with relatives not understanding that the wrong foods can irritate my bladder. I have had more than one of them say things like
" If it's your bladder just stop drinking the sodas, drink more water ( I am drinking more water than I ever had in my entire life) and drink cranberry juice". My husband has been very supportive about the foods but not so much concerning sex. I think he is begining to lose patience in that area.
10-04-2009, 11:20 PM
Yes "an unrelenting UTI that requires a strict diet" should explian it well. If it doesn't nothing will. I'm lucky my family understands fully. They are a great support to me. I had a distance cousin tell me to use depends! Since I don't expect much understanding from people other then family I am never disappointed. I asked her if she uses a computer would she please do a search on IC. She did and called me saying how sorry she felt for me. Most people are not mean they just are uneducated. If they matter to me I tell them if not I let it go. I would guess we have all been there done that. Thank GOD we have each other to vent to. Hugs to all. Ziggy
10-05-2009, 01:28 AM
I had to point out to my mom that if she has a UTI, she calls in sick to work. I also fiound out that if I described IC, people were like, oh okay. If I simply say "I have bleeding ulcers on my bladder, basically much like having a stomach ulcer in the bladder" people visibly wince and recoil and say "oh my gosh, that must be awful!" or something similar. Now selfish, rude people like my ex-husband and his mother never really got it but they didn't really get it when I broke my leg in 3 places either, so that just goes to show you can't fix stupid........lol.
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