How many lost family due to the IC?

[waterflow]

I know I can not be the only one who has had this happen but I was wondering just how many of us have lost family because of the IC?

[kadi]

I think I was well on my way towards being alienated by much of my family, when suddenly my mom developed IC/PFD & discovered that my grandmother likely has a mild case of IC as well.
That improved several family members' attitudes toward me. I'm never happy when someone gets IC, but I do have to say the year and a half I felt alone with it & felt everyone's judgment/criticism was the saddest, loneliest time of my life.

[Kara29]

I would say more friends who will never understand and don't want to understand, were lost than family. Some of those friends I considered as close as family though so it still hurts. My immedaite family and Husband have stuck by me and supported me and still do with my pain.

[izazen]

Funny this topic would come up right now. I just came back from having dinner with some relatives who didn't know I'd been sick and 'hadn't seen me since I became ill (doing much better now however.) All I got was "how come you've been in hiding from everyone??" (I didn't want to see them for this very reason!) and " you've lost so much wait - you look SO THIN!"
Thanks a lot - that makes me feel a LOT better. I made the stupid mistake of wearing black and with my super short hair and red lipstick - I guess the total effect was rather stark and severe. I have to see them again in 2 weeks and I think I'll wear lighter colors and pink lipstick so I don't look so gaunt. And to think I've gained 5 lbs They should have seen me 2 months ago!!

[RAS6]

Lost friends...

My family has been pretty good. They don't always get it, but try to accomodate my diet when we have get togethers (Mom and Aunt K. have even made me IC friendly dishes and gone shopping at natural ffo stores to find me Carob candy and Pear juice) I have a few cousins who are still miffed that I missed a baby shower and the Christmas party, but they are pretty inmature. I really have the seen the difference in friends though. I only have two close girlfriends by this time and am close with my older sister. Many of my friends are just going different ways in their lives (I am married with 2 kids at age 25 and most of my friends are single and still want to party!) and I have a hard time driving to go see people. My relationships with my two close friends and my older sister have gotten very strong though. My sister is my best friend and my illness has helped prepeare her for dealing with her boyfriend's issues with kidney disease. I think I can help her understand why he can just have a bad day and it isn't her fault. It is sad though that people who do not go through what we do are so quick to judge. Having IC has made me stop and think before I judge people or make assumptions. Hopefully as the word gets out about IC more people will understand it is real and devastating.

[icnmgrjill]

Same here. While some family members took a while to come around, I think the biggest impact for me has been with my friends. Honestly, even today when i'm doing very well, I don't have as many close friends as I used to. Many of them were tennis players and athletes that just disappeared gradually when I couldn't play. Some others made comments that I took very personally... like an old friend who offered to send me to a psychic who would tell me why I 'wanted" to be sick.

I'm really struggling with this now... because I can finally do more but alot of those friends are gone now. It's really hard to make new ones ... especially ones who have limitations.

I want to start an IC social group... or a social group for people who have bladder or prostate problems. Honestly, there have to be hundreds in my city but I think, like me, they often stay at home at night just out of frustration. I want to be much more social but it's awfully difficult at times. Definitely have periods of loneliness.

Jill

[waterflow]

All my friends are gone as well but that doesn't bother me much anymore. Got used to it after the first 3. Family is all there is in life and if you can't depend on them then who do you have? Guess I am the only one then who lost the family due to this. Glad I am the only one but now I wonder why me?

[traceann]

Oh Mary, I doubt you are the only one in that area, we just haven't heard from them here, Sometimes I think family can be worse, because at least (I would hope, lol) some friends have "manners" and are at least polite about things, whereas family, well, they can just blurt it out. As they say we always hurt the ones we love! I know I say more things to my hubby than I would to a friend sometimes (which I know is wrong, family deserves just as much politeness as friends do).

And don't forget it's the person's personality and beliefs as well - regardless of whether they are family or not that seems to determine how they handle these sorts of things...

So, no worries - I am positive you aren't the only one!!!

Hugs,
Tracey

[meme]

It took a long time for my mother in law to come around and accept that I have IC and I just can't go everywhere she wants me too. I just turned the tables on her. I decided that until she could accept it just not to invite me or plan on me anymore b/c I wasn't going to put up with it. She came around. I figure it may be a hinderance for my friends and family, but I'm the one who has to live with it!

[izazen]

Traceanne - I agree so much with you. I find my friends are a lot nicer than my family - they feel they are entitled to say anything they want to you and you have to take it.

Typical dialogue with incredulous family members:

"What's WRONG with you?"
"You are toooo thin - you need to fatten up!"
"Inflamed bladder???" "I never HEARD of that..." (implying I made it up!)
"When you are sick you should call people and tell them!" (Oh, ya, that is something I can really see myself doing!!")
"You are being cold and distant and rude to us!" (Always about THEM!)

[RAS6]

waterflow,
I still have issues with family not "getting" IC. few weeks ago my MIL was making all these jokes about how my kids use the bathroom as much as I do (my 2 year old is potty training) She seemed to think it was hilarious! I don't mind a few jokes but she said it several times that day. I got kindof hurt, maybe using the toilet every 30 minutes may seem fuuny, but with my IC it comes with lots of pain and pressure and when I am not peeing I feel Like I have to almost constantly. Then on Saturday she called and asked if I wanted to bring the girls over for pizza (she does this all the time and she knows I cannot eat pizza. I haven't had pizza since August) I told her if we coudl have somethinhg else we would love to come over. She said just forget it. I don't think it was all me, she hasn't been feeling great herself (she thinks it may be CFS) I just get sick of having to eat before I go there and sit at the table watching everyone else eat pizza. And yes, I have done this several times at her house. So whileI haven't necessarily "lost" family, having IC does put a strain on my relationships. I am going to therapy to try to be able to help some of the depression and not have to vent to family all the time. Hopefully that will help.

[trumpet]

I've lost a husband -- does that count??!!

Would you believe he used to make me wait to use the bathroom?
His motto was " You can be first, right after me." (WHAT????)

I suggested (several times) that we move to a house or apartment
that had more than one bathroom, but in his mind, moving was
completely out of the question. Other situations happened similar to that,
and he would not compromise his opinion on any of them. One of them
was that I was not really sick.
You cannot have a good marriage if one partner is unwilling to compromise
or have any concern about the health of their spouse.

Anyhow, the good news is that once I moved out into an apartment of my own, my bladder became less inflamed. (Who would have guessed???)
Presently, my IC is MUCH improved. Probably less stress helped a lot, too.
Leaving was been the best decision I could have made.

Terri

[petrie86]

i dont talk to my immediate family for other reasons. but I hang out with my cousins alot. sometimes I cancel b/c i;m not feeling well. They dont understand it. I get the "you dont look sick" That is the worst! Do you actually have to look sick for them to believe you? Stupid!

Last year i went to Long Beach Island with my cousin and uncle. I made the mistake of drinking red wine and getting sooo drunk with my cousin one night. The next morning I was dying in pain. My cousin didnt get it. I couldnt even make it to the beach just to sit there! I took some pain meds and passed out on the guest bedroom with the ac blowing on me. I think she got mad at me b/c she didnt get to spend much time with me. Oh well!!! they just dont get it! Duhhh I wish they could feel our pain for like 5 mins and then they will understand.

[mary124]

Most of my family don't get this -- and here its been over 17 years! oh well!! My Mom insists that I can eat whatever she cooks, that I just make a big fuss about everything and "pretend that I have pain!" (how can you pretend you have pain??" My Dad however, pretty much understands, he keeps telling my Mother, that she can't eat this so don't cook all of this or that. I'm going down to see my Niece graduate from College in a few months and my Dad told me to be prepare--. I told him that we will probably have to stay at their house another night as the travel gets me. He told me he understands but Mom doesn't....
My friends here at work, they are understanding, when we do go out, they are always asking what I can eat and if I can't eat it then we don't go there.
When we have parties at work, some people always try to bring something for me to eat -- this way I'm not the only one bringing something for me.

[kari1980]

Jill, I think an IC social group is a great idea. And your post made me so sad because look at all you have done for all of us, so just know that you have a lot of friends here who care.

I too don't have any family or friends that understand. I was diagnosed 14 years ago and my husband will still ask me if I want to go for pizza!! My family and friends just don't get it and I'm tired of explaining it, so it's something I really don't talk about with anyone except for the people on these boards because I KNOW they understand. So thanks again Jill.

Kari