Frustration @ Lack of Understanding

[feelsalone]

I'm curious to know if anyone else has had this frustrating experience.

Everytime I tell anyone that I have IC (and I avoid this whenever possible), I always get the same suggestion. Try using adult incontinence pads. This bothers me more than I can say. It frustrates and angers me!

Everyone seems to think that IC is all about leakage. They don't seem to understand that no matter what you are wearing, that doesn't stop you from feeling the urgency. You can't just turn that off or ignore it because you feel that any accident will be invisible to others (and there is no guarantee of this either).

Sometimes, I think this is one medical problem that (no matter how much you are told about it or read about it), you can't even begin to understand it unless you have it yourself.

I am back to work but I did have to go on disability for awhile due to my IC. Everyone kept making the same suggestion to me (like my medical problems were so simply controlled and I wasn't smart enough to see it).

I do feel alone because there is no one that I can talk to who really understands. There is only one person that I talk to about this. My sister listens and she sounds like she understands (even though I know she can't possibly), but at least she tries. No one else even makes the effort.

I'm Frustrated!!!

[dg2901]

Unfortunately the lack of understanding--along with the 'suggestions'--are going to be a continuous thing for a long time coming. You're just going to have to let these comments go in one ear and out the other, otherwise its going to drive you insane.
We've all been there and completely understand your frustration.

Wishing you well...
Diana

[feelsalone]

Unfortunately the lack of understanding--along with the 'suggestions'--are going to be a continuous thing for a long time coming. You're just going to have to let these comments go in one ear and out the other, otherwise its going to drive you insane.
We've all been there and completely understand your frustration.

Wishing you well...
Diana
Diana,

Thank you.

It does help to know that I'm not the only one that gets the suggestions. Why don't people just think before they speak?

Maybe we can all be here for each other. I think we certainly need the support that is provided here. Who else could possibly begin to understand?

[rosezclark]

Hey Hun, I know how you feel. When I first figured out that I had IC these were the same things I was feeling. It was like I had a perminate bladder infection. My doctor put me on Elmiron (300mg per day) it helped allot. Not right away, it took about 3 to 4 weeks. It helps you feel like you dont have to go all the time. Just hang in there. No one understands this condition!!!
But everyone here does :) Stay strong.

[rosezclark]

Hey Hun, I know how you feel. When I first figured out that I had IC these were the same things I was feeling. It was like I had a perminate bladder infection. My doctor put me on Elmiron (400mg per day) it helped allot. Not right away, it took about 3 to 4 weeks. It helps you feel like you dont have to go all the time. Just hang in there. No one understands this condition!!!
But everyone here does :) Stay strong.

[jen74]

Dont feel bad. My MIL suggested the same to me once. I nicely explained to her that I do not have any leakage issues at all. I told her my issues are that I have severe pain(like a UTI from hell) and frequency issues. She has had UTI's before and knows how awful they are. After that she did a little research on it and now somewhat understands better what IC is.
I have given up on explaining to people what IC is. I just say I have a condition with my bladder that is like having a UTI constantly, but 100,000,000 times worse. If you are talking to a person that has ever had a UTI, then they get it, but if not, well then I just dont get into it with them.
Jen

[NewLife]

Hi! I understand how you feel. I don't tell people that I have IC because as soon as they hear cystitis they think UTIs or incontinence. Cystitis and UTI are completely different diagnoses but they are often used interchangeably so few people understand the difference. I say I have an autoimmune condition or bladder ulcers. In any event, it is difficult to expect compassion from people who haven't faced a disabling condition themselves. I used to think that disability meant blindness or a loss of limbs. Little did I know.

[aleet7]

OMG I know exactly how you feel! I love my mom so much but if I mention that my bladder hurts she goes into this long story of how she suffers with bladder issues too! Ok....my mom has never had foods, juices or even sex cause her bladder to flare but she thinks that IC is nothing more than a UTI! It doesn't matter how many times I explain it she says the same thing! I've decided not to mention anything IC related to her. My mother in law is the same way! It drives me crazy when she calls and tells me that I don't sound sick to her! I finally asked her how was I supposed to answer the phone...crying, screaming in agony, sobbing?
This board has now become my place to go for comfort and understanding. I have no one to talk to about this but these ladies..... and it's a good thing!
Best wishes,
Aleet7

[Cherise2040]

I have problems with constipation. My urologist put me on a program with lots of bran. It worked except for the blatter pain. I found out that anything with potassium is going to cause pain. I tried Miralax which made me very nausious. My chemistry must be a mess. The doctors that I go to make me feel like I'm a freak. Can anyone out there tell me if they have a problem with constipation and what they are doing for it.[ I feel alone tobecause of this horrible disease. My sisters think that it is all make believe. My few friends who do not have this can't believe that this is for real. I'm so glad to have this website to read. [I] wish we could all get together at one of our houses. I'm in Florida. Hope to hear from you soon. Cherise2040

[aleet7]

Hi Cherise!
I don't have a lot of problems with constipation but mostly just the opposite. Several of us suffer from Irritable Bowel Syndrome and I'm sure there's a lot of suggestions for you.

It's hard for some to believe in a disease that they've never heard of. No one in my family have ever heard of IC so I think that maybe they wonder if this is just something that I've concocted to get attention. Well, I wish it was just something that I made up but the symptoms are too real to make up.

I hope that you make lots of friends here just as I have. I hope someone gives you some good suggestions for your problem.
Best wishes,
Aleet7

[ICNDonna]

:grouphug: Sometimes we just have to ignore the suggestions. I know it can be difficult at times.

Donna

[judy45]

For me it is like when I had fertility problems. no one except someone who has gone or is going through it can understand or help you, that is why this board is so great. I don't really have anyone I can discuss this with, they don't get it, and truthfully I think most people would rather not know. After a year of being diagnosed my mother FINALLY looked IC up on the internet and became more sympathetic (she was previously sure I was stressed out, just as she was when I had fertility problems), especially when she read that most ICers suffer from Hypothyroidism and sever allergies, both of which she know I have. So my suggestion is lay it out to us girl, we are here ot help!

[anewday]

It is so frustrating! My MIL suggested I just take some vitamins. Yeah, sure, since that would probably make me flare!

Here's how I explained it to my own mom, when she didn't "get" why I complained so much. I told her: "whenever you get a uti, bladder infection, etc. you stay home from work and go to the doctor. well, this is like having a uti every day of my life, times 10000!" she did some research (yay for my proactive mom) and is completely sympathetic now.

It took my wonderful uro explaining it to my hubby for him to comprehend.

I think part of it is because it is not a common disease, it's (usually) not life-threateining, and you can't "see" it. If we had cancer, people wouldn't say "oh why don't you just try chemo and buy a wig". When I broke my leg people didn't say "oh why don't you just drink some more milk". Truthfully, I'd trade the long term neverending bladderpain for a leg injury that will heal any day!

[aleet7]

Author Catherine ****** puts it nicely," The irony in IC is that no one can see it"! Maybe if they could see what we go through then they would have a better understanding! I showed my mom my bladder pics compared to a normal bladder and her jaw dropped!!!!!

Best Wishes,
Teela