I feel like a burden

[PenguinK]

I feel like such a burden anymore. My inlaws were here for the weekend and were telling me that I need to try to think positive and not talk about IC all of the time because it can really bring me down and it will hurt my relationship with my husband. He chimed in "I know, I'm sick of hearing about it."
I replied with "Tell you what, you can have IC and I'll just listen to you talk about it." I'll trade any day. What happened to the sympathy I got in the beginning?? He used to be great! I started having dizzy spells this weekend and I overheard him asking his mother if I was going to be ok or should we take her to the hospital. (this was the same day as the earlier remark!)
I understand that people get sick of hearing us complain, and I was in remission and quite happy for almost 2 months until it returned. I can't find a South Jersey area support group and don't have anyone to talk to about this except my husband and two close friends in the area. I'm becoming more and more depressed and this comment didn't make things any better.
I just feel like I'm such a burden to my family and friends, but if I keep it in and don't talk to anyone I feel worse. Also, I used to be the "peppy talkative one in the group and now when I don't talk much everyone seems let down. I guess the "clown" just isn't into entertaining anyone anymore. Even my father-in-law said I've lost my sense of humor. (then he gave me a big hug, at least he seems to understand why.)

I just don't know how to deal with this thing.

KK

[ICNDonna]

Have you talked with a counselor? They are there to listen --- it can be a huge help in dealing with a problem like IC.

:grouphug:

Donna

[vm]

It is so hard, isn't it? When we are in pain we need to share that - to get it out of our heads and to get support. Then we worry if we talk about it too much people will tire of it. :( I hope you have at least one understanding person offline to talk to about your feelings. Please know many of us HERE are available online to chat or just to vent to in PM or e-mail, OK? It helps so much to get it out --- even if it is via the computer. :kissing:

[emilyrose197377]

I am sorry you are going through such a rough time. but we understand it is hard when other people don't understnad what we are going through we all have felt that way and if you ever need anyone to talk to you can email me anytime.

[Debgail]

Hi KK, I know exactly what you are saying.I am so sorry that your family just does not understand. The complaining comes from "compounded pain" as my husband says and he tells me I worry too much about complaining. He just hates to see me hurt. Maybe your husband and mother in law are just frustrated because they dont know how to make the pain go away for you and they are not saying the right things. I know I feel bad enough myself when I complain and I certainly do not need anyone adding to my sadness of pain. Maybe you should just keep doing as you are and telling them how it is for you and I am sure they will begin to understand how hard and painful ic can be..and how different it is from typical things that cause pain...since it is a lifelong thiing.. we have to find our own ways of coping and enjoying our lives in spite of ic.I too have had a hard time lately with my ic and thats when we need our loved ones the most.
I hope you have some relief and have a pain free evening.
:kissing: Debbie
Ps maybe give them an ic bracelet and further your mother in laws education about ic...and ask her to wear it to support you in this REAL disease :bunny:

[redmowii]

I'm sorry your having a hard time with your family. I can tell you that mine understands to a point. I think that sometimes they have a hard time seeing that you are actually in pain because you look exactly the same. My dad doesn't get it. I will explain all about an aspect of IC, and the next time I go home I end up explaining it again. But he is the kind of person who belives that if you can't see it, than it must not hurt. He is a sweet man, and tries to understand but it dosen't all make sense to him. I hope you can figure out a way to comunicate how your feeling and have them understand and be sympathetic about it. I hope you get feeling better soon.

[kadi]

Yeah, my sisterinlaw told me last summer not to "come over with a big booboo face." It took all I had not to tell her how patronizing & rude she was. So I just cancelled the visit & kept my face at home.

People have NO idea what it is like to have IC. I sometimes can't even believe myself the things people have said to me in the almost 2 years I've had IC. Now that I'm feeling better I realize how very bad I was feeling and how very obnoxious their comments were. It's frustrating because they just don't get it.

I'm sorry you had to deal with that today and hope you feel better soon...
Sending a hug,

[sleepyangel30]

The only people I used to talk to about my ic is my mom, aunt and my best friend they were really supportive. I don't talk about it anymore since I learned to live with it. I do agree with Kandi, people don't know what it's like to have ic they need to step in our shoes for a couple of weeks. Anyway, I pray that you get well.

[Julie B]

I think many of us have this trouble. People don't want to hear about it all the time...........yet.......if we feel bad we have to say something...........or they expect "normal" functioning..........does anyone have a "secret" phrase that they use with their family...............I know I just look at my husband with doe eyes.......almost begging him to "get it" and most of the time he does.................I also make up my mind to be a bit more chipper than I feel.........counseling can help in a big way.....................XOXOXOXOXOXOXOXOX You always have us here...........

[Dixiefireball]

Oh how i know how you feel. and believe you me when i say my inlaws exp. mil thinks she knows it all and its not okay for me to talk about IC because she believes it isnt' a real disease its just something a doctor gave a name to because there was nothing else to dx the problem. (yes she has seen my bladder pictures) its been a while since i seen remission and pray i will see it again soon, but yes i'm going to talk about it because i feel like it helps.
i'm so sorry your inlaws are treating you so badly and what is even sadder your husband agree. I would pop my DH in the head for that and he knows it. LOL. but he want do that anymore he takes up for me now.
like when we was at her a few weeks ago and she was talking about her C.O.P.D and my husband told her his doctor put him on pain medicine because of his lungs to help him. she said "we are just all a bunch of drug heads ain't we" Oh i was about ready to go off, but hubby stepped in and said no some people have to take pain medicine like Rhonda because she depends on it to try to live a normal life. Momma Rhonda is in a lot of pain i see it everyday. then she said oh i didn't mean it that way. Hello what other way did she mean it.
sorry didn't mean to get into a story about me, but i know how heartbreaking it can be to deal with someone like that exp. when your not feeling well :rant:
I agree with donna about finding someone to talk to about this with. like your preacher at church or someone in the medical feild and take hubby with you.
or nothing else have your doctor to talk with him.
My husband use to act the same way until my uro heard him fussing at me one day in the doctor office he must had stood at the door a few mins before he walked in (uro) i was in tears when he did plus hurting i had a ragging bladder infection. don't get me wrong my uro is a christan man but he let dh have it. told him how serious my case was. after that dh seen my heath issue in a diff. light.
sometimes i feel that my illness has brung us closer together then in other ways i feel like i have pushed him away,but at least i do know he ment it when we got married for better or wrose sicker or in the health to death to us part.
he is sticking with me. even when i had my hy. he took two vac. days came home at lunch to check on me (his mother didnt' help me like she promise) called home then when he got off work took care of the children house cooked the whole nine yards.

I feel bad for you hon but you are not a burden Yes you have IC but it seems like the inlaws has the problem with not understanding.
sending you many hugs and prayers
rhonda

[Shelka]

Hi KK,

I can completely empathize with how you feel...I often feel the exact same way...I simply DON'T know what the best way to deal with this thing is! I don't want to bring everyone around me down by constantly complaining but if a friend emails & asks 'how are you' I feel like if I say "Oh great" then I'm not even being myself anymore & what's the point?! Fortunately with my husband I feel I can complain all I want & I don't worry about it (whether he's REALLY listening is another story!! :)

It's very hard for me to know how much to talk about it & when I should just put on a brave face. I wish I could offer you some advice but I don't know myself, what I can offer you is letting you know that you're not the only one who feels frustrated & guilty at the same time.

Shelley

[poetgirl]

You are definitely NOT a burden! It's just hard for those without chronic illnesses to understand what it's like to have to learn to live with something that never really goes away. Counseling does help -- I wish I'd gone sooner. Talking to all these wonderful people here on the boards helps too! They saved my sanity! My family and friends have all been pretty supportive throughout the whole process (and ironically enough, both my mom and dad now have bladder and kidney problems, and I'm the one advising them about what to do!) but my ex-husband did have a hard time with it. Several months after I started treatment, we separated, and we never did get to experience life again like it used to be once I went into remission. IC was a problem for us although I should stress that it was not why we divorced! However, it was enough of an issue that I was very careful in my current relationship to make sure my boyfriend understood the nature of this disease (as well as VV and IBS, both of which I have) so that he knew I wasn't making anything up. He actually did research on his own to understand it better and would email me with suggestions!

I've been in remission for over a year now, but I have had a few minor flare-ups since we've been together. Sometimes, after we've had sex and I'm not feeling so good the next day, I just don't say anything about it because I know it will only end up making him feel bad, as if he was the reason why I'm in discomfort. It usually goes away within a day and is not debilitating like it used to be several years ago. I've learned to handle the symptoms pretty well. And I've had IBS for many years and know NO ONE really wants to hear about crampy bowels, so I guess I've been used to keeping my body problems to myself for the most part!

Hang in there and I hope you feel better soon! I know it's frustrating to feel like family doesn't understand but don't forget, all of us here DO!