Using IC as an excuse for not doing things

[Julie B]

I just found out that one of my kids thinks that I use my IC sometimes as an excuse to not do things............she is generally very supportive and loving.........and I will address this with her when the time is right.

I will never of course, use this as an excuse......and I KNOW it gets tiresome to be quiet when mom is napping or when I have to leave something because I get uncomfortable........but more often than those things happen........I bite my tongue, wait TOO long to void.......or just grit my teeth thru pain.

Has anyone else had someone accuse them of this?

XOXO

[Kelli]

Julie,
I had family members accuse me of pretending to be in pain so I didnt have to come to family functions. I also heard my mom say one time that I have always been a good actress and was just looking for someone to feel sorry for me. Needless to say my mother and I don't have much of a relationship.

Kelli

[ICNDonna]

I don't think there's a parent alive who hasn't heart hurtful things from the mouths of their children --- I think "I hate you!" is probably the most common thing a child will say when disappointed about something. The most important thing to remember is that they don't mean it --- and they aren't lashing out at us --- usually something else is bothering them.

Please continue to think of her as supportive and loving.

Warm hugs,
Donna

[jaime15]

I have a sister who uses "guilt trips" when I don't show up for my neice and nephews sports. The thing is I went all the time a couple years ago. Then the IC got worse and all I could think about is were the nearest restroom would be.

I know she doesn't understand. And I could talk till I was blue in the face about why I now can't come to events. But you know it would go in one ear and out the other.

I don't feel guilty now though. The final straw was when she called and asked me to buy cookie dough from my neice for her school. I told her 13.00 was too steep and I'd pass. Soooo she said well I'll tell Maddy you don't want to. :mad:

I ended up buying it but that's it. I realized I kept her kids all the time and bought them stuff lots of times. I was single and could afford to. But now I'm married with a one yr old. DO YOU KNOW HOW MANY TIMES she has asked to keep Zane?? 0
times.

And I can count on both hands how many times she has seen him. So it's not just your kids I think the adults a worse. They should know how to understand and still don't.

Sorry to ramble on. This topic struck a cord. wink
Jaime

[auntiedeb]

I can relate, but don't have kids. Dad thinks Im a drug addict so do two of my sisters. I ended up in the er last friday with a kidney stone and the other sister said Ihad to stop going there.Well, she always went she had panic attacks, did I say anything? No. I was very supportive and loving and caring. She is now having stomach problems andeveryone is beliving her and helping her. For me, they think this is a n excuse for me being sick. They don't understand. The younger sister has utis so she knows what that is like. If I wasn't in sevre pain, I would not of been at the er. This struck a cord in me too. It feels good to get it out. Thanks for listening. Hang in there. There is alway shope. :)

[Teri]

I'm right there beside you!!!!!!! And, I'm done explaining myself. I'm too old to have to. Yes, it hurts. It hurts ALOT. But there is absoluately nothing that I can do to change the thoughts in someone elses head (I've got enough problems with my own voices in my head wink )

I am in the process of surrendering my children, my step children and my husband into an invisable box and when ever they try to get back into my head, I will remind myself that they can NOT get into my head because I have them locked away in that box.

I was a drunk for almost 8 years. It didn't cause near the damage that IC has caused in my family :(

sending some hugs your way Julie~

[dyno]

I used to feel bad about it and I don't anymore. I have suffered with this now for 28 years, I am almost 45. In my early years of this everyone kept telling me it's all in your head. My first husband was not real supportive. I married my second husband 10 years ago. We had to go to a family wedding on his side about 7 years ago. We started out and got about 30 miles, this was a 2 hour drive. I had a flare and could not do it. We had to go back home. He told me not to worry about it there was nothing I could do about it.

In the last year I have found articles on IC that I have sent my mom, son and daughter. I didn't say anything to my mom about the fact that she was one of them that told me it was in my head, I just sent her the info. It is amazing how much more sympathetic she has become. But as far as I'm concerned if they don't understand that is there problem not mine.

You take care of you and don't feel guilty.

Jolene

[mayray518]

I, too, had people accuse me of everything of wanting to quit my job (Yeah aftr 18 years of hard wrk) and sit on my butt all day; of being a good actress and really hiding a drug problem and; and being stressed out because my biological clock was ticking. I found the best article I could describing IC, the pain associated with it and the effects it has on us. After showing it to the doubting "Thomases" I did not have any more problems with them

[Julie B]

chapter two:

I talked with my daughter and of course she knows I don't do that..........we talked about do much less thanparents who do much less than I do.....despite being healthy........they are all wrapped up in their own lives......

Then we also know parents who are disabled, have MS, disabling heart disease, cancer, chron's etc.........and those families cope graciously..........with prayer and support of each family member...........

Everyone has something.......

Hugs to you all........it was such a bad night for me.......(and thanks Yvette for shouldering my tears.....) It does help to know you are all here............so much.......

XOXOXOXO

[auntiedeb]

((((((((((((JUlie******************************Hugs and prayers to you. It is hard to see parents being ill. My MOm was very ill as far back as I can remeber. /She was 51 when she died of congestive heart failure in 1990. She had her first heart attack at the age of 29 and then I remeber her years later having a sinus operation that took her back to the hospital. I miss my Mom. I got very angry at her when I was 13 years old and I was not the nicest teenager around and would want to run away. Plus my periods and hormones were rapid then. I had a very close and loving relationship with my Mom. When I started getting migranes in the summer of 90, tht is when I knew she was dying and I couldn't go to work or sleep or eat. for two weeks, I was in bed, scared to go anywhere. Mom and I had always talked, when my migranes would hit, I would get like Dr Jekyll and Mr Hyde. strnge isnt' it?. Mom is now in a better place and no more pain. I am glad to see that you have an open and honest and close relationship with your daughter and children. there will be many tears and misunderstandings with this ic. I know alot of people don't understand this but I know there are people out there that support me with this. Hang in there. Prayers for you and your family. There is hope.Angels among us. Have a pain free day.

[yvette]

Dear (((((((((julie)))))))))))))
I'm glad you both talked things out--I know much it stung when it first came out, but it seems something really positive has come out it.

I really would like to add that sometimes the person(s) blasting us for using *IC as an excuse* it's really just a exclamation of frustration and anger that the world isn't fair, and that it isn't fair that WE the 'sick' person haven't been able to participate in the game of life. And that IC has been unfair. They're not really mad at us, as they are the disease.

[Christa]

Hello-

I have to say that I'm very lucky. No one in my family- that includes my husband, parents, in-laws- has ever criticized me or accused me of pretending. They know that the pain is real and that I would never isolate myself from my life just to avoid unwanted work or family functions. Some of my co-workers, however are not so kind. The only thing that helps to convince them is the fact that if I don't go to work, I don't get paid. So there's no benefit to avoiding work.

But I have promised myself that I will never use IC or any other illness falsely as an excuse- I'm mean just use it when I feel ok. If I'm feeling good I let my husband know it. Then we take advantage of that precious time 'cause we don't know how long it's going to last.

Chris

[yvette]

To Jaime: I know what you mean about Reciprocation not being offered between siblings. ::::sigh::::
If I could take Zane for an afternoon while you go get beautious at a Spa or something, I would.

And.....13 bucks for cookie dough!!!! Holy smokes!!! it better be calorie free and know how to bake itself!!! eek eek eek Also The little comment made after declining wasn't necessary not to mention manipulative and obnoxious.

[jaime15]

So true Yvette. We could make millions on cookie dough baking itself. wink

But I'm slow and learning her ways. Youst to when this happened I complained to our mom and she would just refer back to my sis having a stroke when she turned 18. Well she's 29 now and that was a while ago. So I started saying mom you can't use that as an excuse everytime I want to pop her one for being pretty much a brat. Mom's caught on now though. :D
Jaime

[liz2]

I think it is very hard for children, especially the grown ones, to realize that Mom can't do what she used to do. My grown children know that I have health limitations, but their acceptance of those limitations is a totally difference story. They are not in the household and don't see what is happening.

That is especially true for other relatives; they don't see as much as your children do.

[Dixiefireball]

oh how i know the feeling my husband has accuse me of being a drug head to being lazy and it hurts. and my children don't understand why i can't get out and play with them like i did before i got sick. it hurts me and really makes me feel down on my self. I remember the feeling all to well mom's are perfect they will get better my mom died of cancer in 88 i was 13 at the time it was hard to understand then why mom wasnt getting better moms are perfect in there children eyes. well mine was anyway. but that is so hurtful. i wish people understood better. sending loving thoughts grouphug

[Pristine]

With me it's my sister in law. I love her to death but have always had a shaky relationship with her. I can do no right in her eyes. Now that I have IC God only knows what she's thinking but she's always telling me I need to try to get some money, get some money....over and over again. Well I cant get SSI or SSD and thats that. I'm trying to find a part time job doing something I know I can handle for a few hours a day with my IC and the rods in my back. It's not easy being me and she never seems to understand this. She just wants me to go away but I just keep caring about her and my husband says I need to stand up to her and tell her exactly how I feel, but her emotional game scares me to death and every time I try to talk to her I get nowhere. frown

[graceimnot2096]

My family is somewhat supportive. It depends on what they want from me at the time. My kids have not saidd anything like that, but my b/f does. He thinks that the pain managment is mind over matter and that it doesn't hurt that bad. When he is supportive he is great but most of the time he isn't much help. He just doesn't understand that it hurts to sit on a hard bar stool, or wear pants. He thinks that it is cute that I always take my pants off as soon as I get home from anywhere. He told me the other night at the bar that he understood that I needed to go home as he ordered another beer. I love the guy but I've just about had it.

[Sarojini]

Yeah, I've had this happen -- occasionally my husband will want to do something like go to a Mexican restaurant when I'm already flaring up, and when I say no, he'll sometimes get mad and say I'm making excuses not to go out. Of course, in those moments, he doesn't seem to remember all of the times that I am ready and willing to go places with him, or the times I suggest going out...

It is just so annoying when someone says this kind of thing.

[weezer]

I HAVE to reply to this one. I thought I was the only one who went through
getting their feelings hurt by family and friends. My "dearest friend" who I had for many years and who suffered from heart disease ( she had 5 bypasses) and I was always at her side through thick and thin thought that IC was a symptom that was just in your head. She had moved to Calgary from Vancouver, Canada where I live and was always inviting me to come and stay as long as I wanted to just relax and have a few laughs. Even though I knew how she felt about my IC, I would talk to her on the phone long distance daily because she was very dear to me and I thought I was to her. I had visited her and her husband many times, but things changed when I was put on stronger medication for my IC. I told her this and she still wanted me to come and visit, so I agreed. Both her and her husband picked me up from the airport and away we went to her "new home" which was a condo, so there wasn't much space, but it was beautiful and there were 2 full bathrooms thank goodness. I had no sooner taken my coat off and hung it, when her husband made the comment to me "Listen Weezy, THERE WILL BE "NO" MOPEING OR DOPEING" when you stay with us , SO JUST PUT YOUR MEDS AWAY!!!! I was in disbelief and terribly hurt. I had prepared a booklet,
with all the information on IC for my friend and her husband and when I gave it to them they told me they already knew what IC was and that they were not interested in the booklet. She was my best friend for over 20 years and in a blink, the friendship was over. I stayed 2 days and returned home and to this day have never heard from her. And I have never contacted her, because I have never been so hurt by anyone (especially by someone who I had stood by with each and every operation she had, and cared for her afterwards, by doing her cleaning, washing, ironing etc). in my whole life. Just talking about it brings back the brokenheartedness I felt, and to this day still feel. I just can't understand why she abandoned and hurt me the way she did. I REALLY know how you feel Julie, because in the beginning when I was diagnosed my 3 children thought that I was using my IC as an excuse not to take my grandchildren (6) of them, for the weekends etc. but as time went by they came to understand that I just couldn't do it. As for my friend, the way I feel now is that she lost the best friend she ever had or will have, because of selfishness and unkindness. Hang in there Julie.
Weezer

[marsi4]

I'm sorry you had your feelings hurt, and feel betrayed and abandoned. My friends have pretty much abandoned me as well. A lot of people are selfish and self centered unfortunately and lack compassion and understanding. Twenty years is a long time and you deserved to be treated with the same kindness and care that you treated her when she was ill. You were a good friend but she wasn't. You know who your true friends are when you're in need. I find that a lot of people don't know how to deal or treat others who have disabing conditions and it's much easier for them to detach themselves from them. The ones that stay are true friends. I hope that you find another friend who will be there for you in times of joy and hardship. I hope she realizes what she has done and and gives you an apology. Maybe it isn't too late to restore your friendship. LOL,

Marsi4

[hawkbabe143]

The Words Out Of My VERY Supportive Mother Are " There Is Always Something With You, Isnt There Kimi?"

[ShePurzz]

I am so sorry for all of you who have been through so much disappointment and discouragement as a result of someone not appreciating the GOOD things about you and only seeing the IC pain -- oh... that's right.. they CAN'T SEE the IC so it doesn't exist! right?

It is so hard to read that you have all been treated so harshly by others. I have had that from a few people, some family even, and I have certainly hear the part about 'just get a job and you will feel better!' Okay, after years of working and finding it more and more difficult to pull off, I am now a stay at home mom of all adult children who don't really understand it all, but are certainly a little quieter about their 'dis-belief' in this condition.

I guess because I am married (for 8 years now) to what I consider the best man on earth, I am fortunate -- however -- I notice days when he is staring blankly back at me and I will interject, "I love your new purple purse", or some such thing... to which he will eventually blink and say.... "What did you say?" :rolleyes: Ha ha... well, I think the lesson is this.

HERE, you have people who can EMPATHIZE with you about what you are going through.. those who haven't experienced it can only SYMPATHIZE with you... and there in lies the difference between feeling understood and just being heard - or not.

Here, people can say "I am so sorry you feel that way" and YOU KNOW THEY MEAN IT!!! They have been there or are still there and you believe they care -- why else are they at this site talking to you???

At home, it is harder to recognize when you are being empathized with because they #1 DON'T really understand nor would you WANT them to really understand -- they would have to experience it to really understand it, right? and #2, they can't walk away from the computer when they have read enough, or need a break or just have to go pee :toilet:

Perhaps the key is to understand and separate our healthy sides and our IC sides. There are times when you feel good -- I HOPE -- in a day or a week or an hour or two... during THOSE times... don't talk about yourself -- focus on someone else and give the attention you can.

Possibly the reason our families get tired of hearing about our problems is because we talk about them too much and don't ever seem to have something positive to say - and granted, sometimes we don't.

I found the message thread about posting something :) POSITIVE very wonderful because it really makes you stop and find something good in the middle of a lousy life -- IC can surely make for a lousy life if you consider it doesn't seem to be the only RX we each have... we are carrying around a lot of hurt and pain and discouragement daily -- BUT someplace inside of you is a good day, a good hour, a good moment when you can remember --

YOUR FAMILY NEEDS YOU AND WANTS YOU TOO! They want you and they love you and they probably care more about you than you realize or will believe -- aren't we sure that if they had a choice, they would select a different mother/spouse/sibling/significant other/ etc??? Of course, but why is that??? Could it be -- could it possibly be --- that it is because WE WOULD WANT a different spouse/mother/significant other if we had someone with all the ailments that WE have? :confused:

Well, we don't go get a new person -- we learn to deal with and live with the one we have -- and we try to find the best in them... Hopefully that is what your 'others' are doing too... hopefully they are struggling with what it is that they can do -- and when they recognize that they can't do ANYTHING to fix our problems -- it has to be a very uncomfortable place for them to fall... helpless and stuck with the problem.

I hope this is encouraging to someone -- I sure mean it to be. I hope it will help you to take ONE moment in your day that you feel able to do it and FOCUS on someone else. I truly believe that THAT is a very difficult thing to do especially having had IC for the past 19 years. I know there are days when the world should be ALL ABOUT ME!!! Because I just don't think it is FAIR to feel this much pain all by myself.:rant:

However, it IS the life God has given me and I will live it until I am gone -- therefore, I have to choose to make the best of each day and try to find something good in every day, every moment.

Here's a little something I posted on a yahoo group site that I run for people dealing with anxiety and depression... I hope you will enjoy it!

"I can't change the direction of the wind, but I can adjust my sails to always reach my destination." -- Jimmy Dean, performer and entrepreneur.

"When you can't control the change that is occurring, can you control the way you look at it, so that it works for your advantage? Do you see the dark corridors of the Maze or the New Cheese you will find?" Spencer Johnson, author, "Who Moved My Cheese?"

God Bless and give you all a pain free moment, hour, day or week!
Mary
:love:

[mayray518]

I have felt better for 7 years now (after being bedridden for 7 years) and the comments still come. People just dont think before they speak. If I hear one more time "Why dont you move on with your life (which I have) why do you still bring IC up, why do you still go on that site all the time" I will scream. And these are people who have never had anything seriously wrong with them or if they have had an illness, it is taken care of, they recover swiftly and move on. After being misdiagnosed and rejected by family I will never stop taking about IC nor will I stop helping people who have just been diagnosed. Some people have the "it will never happen to me attitude" or they put in under a category like headache. I guess my point is that even tho I feel better physically I will continue to voice my opinions on how doctors treat women with rare diseases and money spent on women's diseases in general.

[ShePurzz]

Isn't it funny how those who have perfect health don't talk about how blessed they are to have good health? Instead they complain about those who have bad health talking about their problems.... :bonk:

Maybe it hasn't occurred to them that IF you had a good day, you would LOVE to talk about it... you are just waiting for a good day to talk about.. :rolleyes:

I appreciate that you are doing well and STILL CARE enough to fight for what you now was missing in general for women's health, but even more specifically, diseases that aren't easily understood.

Perhaps if everyone with IC had to wear a cast on their sore spots, it would help the world get a better picture of just how badly it hurts! I feel that way about my fibromyalgia and CFS -- both are not visible -- although my doctor says that my muscles make HIM tired just trying to work on them... and my husband can take one look at me and know it is a 'sleepy day' -- that's what I call a CFS day -- 'a sleepy day' feels like it is a day you are going to get rain -- in the house? but it doesn't come.... and you just CAN'T make your body take another step... except perhaps to a soft chair or the sofa where you can drift off for three or four hours ... some days are just tougher than others.

How nice to know that some people don't 'get well' and go away!

thanks for speaking out!

Mary

[graceimnot2096]

I've heard all of that stuff myself. I have the most trouble with my bf. Last week he told me that I needed to stop taking the meds and get a more positive mental attitude and that will make me all better. The mind has the power to heal and I do believe that to a point. Otherwise I wouldn't get out of bed everyday. I think he says those things because he can't fix this for me so that I'm healthy. He doesn't open up much and I know that he is trying to do the best he can with what he knows. I know that he loves me and wants me to be well. You know the football mentality (notice it starts with "men") rub it off and go on. I really think that although the people around us say some really stupid stuff like that, they are really trying to help, they just don't know any better, they can't really understand because they don't have this disease and I pray that they never really understand it like we do. Just think if they knew about the pain we don't talk about.

[glassd18]

Yesterday I went to my sister-in-laws for a birthday party, and of course there were a few things I could eat, but most of it was no where near IC friendly so I had to pass on it. My mother-in-law whispered to my sister-in-law "she's not eating anything" and my sister-in-law said without any sympathy or empathy at all "oh well". I don't expect anyone to change for me or to cook differently for me, and never asked anyone to either. I always say don't worry about me, I can bring my own food it's no trouble. I know one thing from my life experiences of being hurt and offended by others: I can only change myself. I can't change others, and the more I reflect on other peoples defects of characters the worse I feel. I pray for them and move on the best way I know how. That doesn't mean we do not suffer or hurt, but it sure feels good not trying to play God. I try not to talk too much about my IC to people that don't need to know, and if I'm not feeling well I just say that I'm not feeling well, and leave out the details. Let them think what they like!!! Do something positive for yourself everyday!!! Peace and love to everyone. My prayers are with you all for a pain free day!!!

[anxious one]

Sisters in law... is there ever a good one??:rolleyes: Sorry. i'm sure there is but I lucked out with mine. the day after her wedding last year we had the ritual gathering to open presents etc. There is about 50 people sitting around this lounge room. My mother in law shows me these spinach filo things that she thought I could eat for lunch (I'm vegetarian as well and my MIL is quite good about it.) After eating a menu completely IC nasty at the wedding the night before I was seriously in agony. I'd been up half the night on the loo. So, I asked very nicely was she sure what was in them? My SIL from the other side of the kitchen says loudly enough for the entire house to hear- "WHAT DOES IT MATTER WHAT IS IN THEM? We bend over backwards for you and all you do is cause trouble. I'm sick to death of you being so unappreciative!" I was so stunned I burst into tears and fled from the house. She followed me with an entire barrage of abuse that escalated into full scale farware. I tried to explain about the IC but she quite honestly couldn't give a rats. She only sees it as an inconvenience to her and the family that I can't eat "normal" food. How thoughtless I am.:rolleyes:

It sucks when people don't understand what we live with every day. Thank heavens for the ICN!:angel:

Sara

[glassd18]

Yes, that's pretty insane? Sounds like a nerve was hit somehow. She doesn't want you to have any special attention!! My sister-in-law has embarrassed me to pieces. At a wake after a funeral one time she called me a dumb Canadian in front of her whole family. I was so embarrassed, and wanted to run, but unfortunately I was in another State (I live in the US now), and my husband was driving!!!! At her Grandmother's funeral no less Ugghhh!!! Amen to the ICN!!! Go sisters go!!!

P.S. I was a vegetarian (I am a huge animal lover), but could not figure out how to get protein without eating the offending soy. It seems everything veggy was soy based. What do you do to get your protein if you don't mind me asking.

[weezer]

On the topic of sister in-laws, yesterday my sil phoned me to inform me that she has a friend who is a kinesiologist, and she has found a cure for IC. My sister inlaw and I get along very well, but when she pulls poop like this it infuriates me. I know this kinesiologist very well, and I have been to her many times and she has not been able to do diddly squat for my IC. So I asked my (sil) , why hasn't she called me to tell me about this cure she has, as she is a friend of mine also, and as I said I have been to her many times for different issues. I said to her "she knows how severe my IC is and I'm sure if she had a cure for IC, I would be the first to know about it." She in turn made the comment (which blew me away) , "well maybe it is because you don't want to find a cure." I more or less told her what I thought about her statement, and of course hung up in tears because I could not believe she would actually talk to me like this. She has seen me in terrible shape, in excruciating pain, and I will never make a comment on how I feel to her again.
After hanging up the phone, I phoned my friend the kinesiologist, and asked her about her so called cure, and why she had not called to tell me about it. Her exact words were, "you know if I had a cure for IC you would be the first to know about it - I don't have a cure for anything. I am not a medical doctor, and you sil is way out of line in what she told you." She then said she had someone come to her who had just been diagnosed with IC , and she had put her on some herbs that I have taken before for her urgency & frequency. This person did not have "hunners ulcers", or did she have pain. Her problem was the early stages of having to go to the loo every hour, and her lack of sleep because of this.
So, here is another case of because you can't see this rotten disease, you don't think the person is as bad as they say. I love my sister in law dearly, but she is somewhat of a drama queen, and at times drives me crazy. I am going to forget the entire conversation, but the next time she ends up in the emergency room because she has a sore mouth which turned out to be nothing, I'm afraid she will be waiting there alone. I am so sick and tired of trying to help everyone else, and get nothing but negativity in return - so now I'm going to take care of Weezer! And of course, keep my sanity by being involved with all my "IC friends here on the net".
Weezer

[glassd18]

You bet Weezer!! We have to take care of ourselves!! My SIL is ALWAYS sick and her Mother is always running to her side. When I'm lying here in pain it's oh dear. All my family is in Canada, and I can't really get the support I need except for right here on this website.
Di

[Briza]

Sounds like a darn good excuse to me. That's all I have to say about that.:elvis:
:toilet:

[reesper]

I live alone, so I don't have to deal with this. And I plan on living alone my whole life (marriage sounds worse than a death sentence.) Anyway, it's frustrating because IC is mostly an "invisible" disease so people underestimate how horrifyingly painful it is. And people amaze me every day with their cruelty and just plain stupidity. Frankly I am a loner and will be one until the day I die. I just plain can't stand people. If the very people who are supposed to be your support network are insulting you and bringing you down then that is absolutely disgusting, and they are poor excuses for a human being. I got fed up with all the crap that humans do a looooooong time ago.

Sorry for not really adding anything.
Just don't let ANYONE let you down because they have NO IDEA what IC feels like.

[Zygala87]

I have the opposite problem with my children. They are middle age and my Daughter worries so much about me it has taken away her quality of life somewhat. They are use to the "Mom can tackle anything" Mom. They want their old Mom back. Well old Mom is gone and the new Mom is here and she is still able to try to be all she can be. I'm not young any more. Even if I didn't have IC & MS I still would have slowed down as I have grown older. Life changes, nothing stays the same. We have the same Doctor and he has assured her he will do all he can to help me. He does. I keep telling her I am fine as I can be, that she adds so much to my life but she must accept the fact I'm growing older and changing. I don't want her to obsess like this yet I don't know what to do about it. Hug, Ziggy

[glassd18]

Wow this post started quite a while ago, and my mind set has changed a lot since then!

Reesper I would hate to see you lose out on something or someone special. Not all marriages are the same, and not all people are the same. By cutting yourself off you also cut yourself off from the possibilities of having something or someone special happen in your life. Not all people are bad sweetie it just feels like that when we are suffering so badly and we aren't receiving the understanding that we need. Talking to a counsellor can definitely be a benefit to anyone suffering with this or any other disease. It is very hard for people to understand what they don't know about. I stopped talking about my disease in front of people I knew would not understand a long time ago. I don't overly explain myself anymore, and I don't argue with people. It is what it is for us. There are some IC support groups around too. You can check the list to see if there is one in your area.

[reesper]

Reesper I would hate to see you lose out on something or someone special. Not all marriages are the same, and not all people are the same. By cutting yourself off you also cut yourself off from the possibilities of having something or someone special happen in your life. Not all people are bad sweetie it just feels like that when we are suffering so badly and we aren't receiving the understanding that we need. Talking to a counsellor can definitely be a benefit to anyone suffering with this or any other disease. It is very hard for people to understand what they don't know about. I stopped talking about my disease in front of people I knew would not understand a long time ago. I don't overly explain myself anymore, and I don't argue with people. It is what it is for us. There are some IC support groups around too. You can check the list to see if there is one in your area.

I know what you're getting at, but trust me it's not for me. I've been a loner all my life and that's how I am happiest. Looking back at my post I apologize for it sounding a bit misanthropic. I was in a bit of a bad mood. People aren't bad, people are just people: they have their faults and their strengths, things that make you proud to be human and things that make you just shake your head.

[glassd18]

I'm glad you are in a better mood today!! :)

[babykiten1]

I have gotten that from my brother and sister in law. My husband is a rock that supports me no matter what and if someone said anything in frount of him then he wouldnt take it. But I have had them make there comments to me when he wasnt around. Well you look fine. And people at work are bad too. I dont look sick. The only thing that looks bad is me looking really tired becouse I havnt gotten any sleep. I think sil are the worse. Reading everyones post they are all about sil.

[Mothergoose]

Just to add a story recently my husband I and went on holidays, we were to be gone 6 weeks and going to alot of places, I have alot of pain and alot of frequency I really try not to complain about my problem especially on holidays.

For the most part my husband is pretty good about me being sick all the time but sometimes he could be better about it or just more understanding at least.

Well on the early days of our holiday, I noticed him roll his eyes a couple of times when I said I needed to go pee agian, I let this slide I didn't want to pick a fight, but one day I said I needed to go and he said something about going when we get to where ever, well this was enough to put me over the edge, believe me I know it is no fun to always be waiting for someone to get back from the bathroom, in truth it is no fun for me either. I replied with "what part of I need to go pee now made you think this was optional for me" I then reminded him how much worse I am if I have to wait, and the for good measurre I added I didn't appreciate the rolling of the eyes. He never said a word again on or holiday or since.

Sometimes we need to stick up for ourselves, and sometimes it is just best we bite our tonges.

This is a very good post topic Thanks Mothergoose

[Mothergoose]

As i said in my last post while on holidays I really try not to complain I really try to be a good sport and do all I can do, but this backfired on me as well. We went on a short one week family holiday, I had a migraine the whole time and I was takeing edvil for it, but I didn't know it was causing me retention as well which was getting worse daily, to say the least I was really suffering. When we got home we were visting friends, our Dr. my husband said that I was not sick at all while I was away but I was sick as soon as we got home.

I was flabbergastted I couldn't believe he actually had no idea how much I suffered that week, I then wondered if my Dr. the next time I went in to see him would think, but I explained it to him and he seemed to understand where I was coming from.

But I did myself no favors, since then I have learned not to complain but to matter of factly state what I am going through.

MG

[ljharris]

Several months ago, a friend invited myself and another friend out to the bar. I thought I declined politely, and mentioned that I didn't feel well - and she said, "You never feel well." That really hurt. It's not like I choose to be in pain!

Luckily, that was a pretty isolated incident. I have some really great friends who have been extremely supportive, and my family has been great too.

[glassd18]

Oh I've had that said to me before. I guess better me than them right!!! Do you believe in Karma? It is so frustrating to deal with people like that. Don't worry we are here for you!!!

[babykiten1]

and the thing is you cant really drink so why go to a bar and watch your friends drink. My friends know and understand that I cant drink so we dont go to bars and stuff. we go to movies and things like that. It is no fun watching some one else drink when you are stuck with water I also beleave in karma they are there for you if it dosnt bother them what comes around goes around

[Hannah13]

I just found out that one of my kids thinks that I use my IC sometimes as an excuse to not do things............she is generally very supportive and loving.........and I will address this with her when the time is right.

I will never of course, use this as an excuse......and I KNOW it gets tiresome to be quiet when mom is napping or when I have to leave something because I get uncomfortable........but more often than those things happen........I bite my tongue, wait TOO long to void.......or just grit my teeth thru pain.

Has anyone else had someone accuse them of this?

XOXO

I worry all the time about the impact this horrible disease has on my parenting. Our children will eventually understand. As for adults, any adult who refuses to treat you with dignity and respect is an adult you don't need. Hang in there. We're with you.

[Glenda2]

My entire family is dead now.
So is my Husbands family.

It's just My Husband and I , and our son. Turning 28 soon.

Not once have either of them said a Bad word to me about my health conditions causing me problems to where I cannot do daily tasks.

In fact , they always bend over backwards to help me.

My son lived at Home with us till he was 25. He didn't want to leave home.
Untill he met his current Girl friend and they fell in love and live together now.

Not once did my son ever use that filthy line > I Hate You*
If you bring your children up Right to Love and Respect you , they will Not speak to you in this Tone.

Having a Loving supportive spouse and children is so important.

Being in pain from IC is horrible. There are days I don't want to get out of bed because I ache so bad.

[mary124]

I have 2 grown sons and I have never let IC get to me in regarding to family,school activities, work, etc. My youngest who has been a godsend to me since I had OHS back in 2003 is just the greatest, can't say enough good about him. My eldest up till recently i thought he really didn't care one way or the other, till I overheard him talk to my sister about me and whatever is wrong with me-told her that he thought the world of me and thought I was a wonderful Mom and he is proud of me! My husband has been a big help in all of this as well. Even my co-workers/supervisor is wonderful never once has anyone said anything to me about my IC and other health issues.

[Kage]

I am essentially cut off from immediate family support. They are 1000 miles away, it's just me and the hunie-bunny.

We've been together for 6 years, and he has stuck by me through the worst, held my hand through surgery, and tried his best.

That being said, people who aren't chronically in pain don't get it. I don't think he ever will. Just yesterday I got the "it's all in your head" jargon. He means well, and what his intentions are is "don't stress out, it won't help"....but it still hurts when he minimalizes it. His language is often cold, as if he is tired of it, that it is my fault.

Additionally, he tries to tempt me in to normalcy. Like offering to take me out to resturaunts he knows I love, but can't have (like thai food...mmm) I have to politely decline repeatedly. It is another reminder that, no, I am not normal.

I know it comes out of frustration on his part. He wants me to be better, but he can't fix it, so he shuts down. I know he only wants whats best, I just wish he'd pay more attention to how his reactions affect me.

I don't really care what the other friends say, I tell them to shove it, and since they are mostly guys, they are fine, not emotionally invested. I think they also like the idea of the forced designated driver when i can make it out for a few hours.

My family has stuck with me through it all. Even when most frustrated, they have supported me. My dad would sell the shirt off his back to try to fix me (I don't want that, but appreciate the sentiment). My mom has also suffered from illnesses that have rendered her incapacitated from a young age, and has been my rock. She always knows what to say to make me feel better, and that is something to be very grateful for.

[CDolphin885]

I know how you feel. I have been accused by friends and family members that i use it as an excuse. I sometimes wish that they could be in my shoes for a day.
Cheri

[ICtampa]

I know how you feel. I wish many people could be in my shoes for maybe even just an hour!!

I have the same experience but a little bit flipped around. I am 23 and when I felt down about this the other day my mom made a comment, "Just be happy you don't have cancer!" This made me so sad and infuriated. Of course I know I could die from cancer but my urologist told me himself that often IC pain is worse then bladder cancer pain, and he knows because he sees both kinds of patients.

My mom saw my face and immediately apologized and I know she feels bad now that she said it but really how can ANYONE judge the situation we are in?! It's pathetic.

Like I want to miss out on things!

the best to you all, kate

[Glenda2]

I am so glad I have been married way over 30 +++++ years to a wonderfull man that thinks the world of Me.

He bends over backwards 24 hours a day to make sure I am Ok and if I need help with something.
My son is the same way. He goes out of his way to help me.
Never a Foul remark out of his mouth.

If your family really LOVES YOU , they will Not treat You poorly.
They will bend over backwards to help You.

[ICtampa]

My husband does this thankfully! Don't know what I would do with out him....

[baaaby11]

I've never been close to most of my family. However, I have a twin sister and she is my absolute best friend in the whole world. She helps me in any way she can. When she cooks for me, she makes sure to not use any ingredients I can't have. She never minimizes anything. She's the best!

[songbird7]

IC is what is called an "invisible disability". If someone is in a wheelchair that is more obvious. I found an Invisible disability advocate website with resources such as books that address this problem. In fact one of the books even has the title, "But you Look Fine. Here is the URL. I hope it is helpful http://www.invisibledisabilities.org/