How?

[Jinny Jean]

....I get SO discouraged when over and over again I have to tell my mom.. no I cant help you move the couch, clean out the fridge or go grocery shopping... Im not like I used to be mom.. im different, I hurt. NO ONE gets this! I dont know how to inform her, how to make this make sense to her!?

Today I got home from walking around the mall with my boyfriend for an hour. When I got back I was burning! The ONLY way to make that stop is to take a HOT shower... and lie down til meds kick in!

My mom always says im making exuses and just getting out of jobs etc... it hurts my feelings so much when she yells at me and tells me that Im lazy!

"oh you can go shopping but you cant help me!"... "how convienient"....

This is what she said to me today... while I was laying in the bottom of the shower.

What do i do?

[Linda May]

Try to explain it to her this way mom get some battery acid and pour it on your virgina and tell me how you feel. I too get angry when people do not understand.

[bubbe1]

how

Jinny,
I'm so there with you. It's frustrating when people, especially those close to us don't understand.

There's a, how to talk to people about IC forum, on this web site somewhere,(sorry, I can't remember where). If you can find it, that might help. Maybe let mom read some of the posts here. Could be an eye opener for her.

The only other option is to let it go. Perhaps Mom isn't going to understand, or doesn't want to maybe, because she's used to you being able to help her and what happens if you can't, so just don't let her words sting you. I know that's easier said than done, but learning to let things roll off your back could be the answer.

I hope you can find some peace. Take care of yourself.
Laurie

[ICNDonna]

Maybe you and your boyfriend could volunteer to do some shopping for your mom once this flare cools down --- instead of walking in the mall? You'd still be with him and your mother will know you are at least trying.

Warm hugs,
Donna

[Linda May]

I don't know donna it's seems like the only people who truly understand is someone with IC. I try to explain it to people and family and it like goe's in and out their ears. I just don't believe anyone could possibly understand unless they have the desease themselves.

[123456]

There came a time after I was finally diagnosed when my parents thought everything would be all better. I tried and tried to explain and they didn't HEAR me. I finally told them that I would not have any further discussions with them until the did some research on IC and I provided them with a website.

FINALLY...They called me a few days later after reading the information and apologized.

[Jinny Jean]

... Yeah I think this will be what I have to do. They do know something is wrong, but they think that it doesnt affect me often because I am able to still be functional to a certain point. REALLY irritates me. We all know that putting on a face is part of our every day life.

I keep telling her to do some research, but I think if she agrees then SHE has to accept the diagnosis too. I also think she is in denial.

Anyways, thanks for the responses

Jenn

[nanawaggs]

Hi Jinny Jean ~

I know you're quite a bit younger than me (I'm going to be 62 this year!) but I can reassure you that this IC thing is something I'd never even heard of until 2 years ago. I thought I was crazy until I read a booklet in a Uro's office (before I knew about IC) and I told him that I could have written the booklet!!!! I think that because I'm older, I get less confrontation than someone younger. I know I probably would have "doubted" my own daughters if they'd have had the symptoms I've had but now, Oh, My, I don't doubt anything anyone will tell me. This disease sounds so bazaar....it is "irrational"....I can feel good enough to walk around Disneyland with my daughter and granddaughters and then the next day I'm in absolutely misery. I am still finding out all the triggers for me...such as the walking. This is just crazy and I'm amazed that I'd never heard of it until it hit me at 58 (diagnosed at 60).

I'm sure your Mom really just doesn't understand because it IS so strange and we can do things one minute and in agony the next. I love the idea of asking her to research more and then talk to you. It is REAL, it is PAINFUL, it is CRAZY and it's so ABNORMAL that people just don't get it unless they've experienced it.

Blessings that things work out at home.....just give your Mom a little time.

[cjensen75]

Hello,

I really can relate to the poster. When I had my surgery it seemed my mom was very caring about my IC and then a month later she would get angry if I couldn't eat what she made for dinner. As the months went on, the angrier she got about my IC and what I could/couldn't eat. I have told her there is no cure for it and eating from the IC diet list is helping me avoid serious flares.

So tired of repeating myself to her and reminding her that eating certain things can cause a bad flare up.

We have to put out health first, take care of ourselves, and take our required meds. Everyone's IC experience is different from each other. My flares start from lifting heavy things, bending down too much, running, and my period.

[pookashell21]

Completely Understand!

Hey I get it 100%. My father is in complete denial and tries to tell us (my husband and I) that IC came about by some direct or indirect action we personally took....for example he says that my pet birds caused my IC or that our new home must have caused my IC and so on. The list goes on, and I have tried explaining it to him numerous times without any significant improvement in his understanding of this disease. He refuses to accept that I have it and that it is not going away. I eventually just had to give up trying to explain it to him....some people you can't make understand, which is hard but unfortunately the truth. Hopefully one day he will leave his denial behind...who knows? Until that day I need to keep a good head on my shoulders and keep moving forward with life and not get too bogged down in his lack of understanding.

[dg2901]

Given the scenario you did, I can understand your mom's frustration. She see's you out and about with the boyfriend, yet she cant seem to get you to help her. I, as your mom, would get a bit frustrated as well if this seemed to be the norm.
Unless someone has this disease theyre never fully going to understand. Some people are more empathetic than others....remember too that you cant make people understand, you can only offer education and let them be their own teacher.
I, personally, would spend time with her helping her grocery shop or whatever she might be requesting once or twice per week.
Certainly you can see her frustrations if you look at the situation from her viewpoint.

Wishing you well.

[penneyjo]

On the same topic, AWARENESS, but different.... I think we all need to continue to try to get awareness out there. I have written the Dr. Oz show YET AGAIN to try to get him to have something about this disease. I think we should contact people from the magazines we read, etc. Anything and anyone who could help get the word out about this. It makes me so frustrated about how nobody gets it and how could they possibly? They problems we have don't make any sense and people just glaze over if you try to explain it.

[Julie B]

Jinny, how much does your family actually know about IC? There was a PBS documentary about this a few years ago that actually gives patients and families a good overview of what this is all about. Jill and I were both interviewed about this.

You can buy the video on Amazon at http://ht.ly/4PYRq.

It is worth a shot. Even though I was interviewed about it and I work with IC patients, when my husband saw the video he got a greater understanding about what I went through.

There are also several good books and resources here in the ICN store.

Sending you hugs..............believe it or not, at some point you will start to feel better. Most people do............