When family members don't believe in IC

[icnmgrjill]

Hey guys,

I'm working on our Spring newsletter and doing an article on some of the common worries that IC patients have. I'm working on the section about family members who don't respect the IC... and was wondering if you could share with me some of the more upsetting things that family members have said to you. Did they not believe in IC? Did they doubt your commitment to get better?? Did they accuse you of being lazy?

I know this is weird.. and not necessarily the most encouraging thing to write about... but sometimes it's good to vent and share with others that they aren't the only one having family difficulties.

I, for example, had siblings who just didn't get it. I didn't feel at all supported until they saw me doing the neuromodulation at home and pulling LONG needles out of my ankles. That was the turning moment in them seeing that I really was struggling and trying my hardest to get better.

What have you faced?

Jill

[waterflow]

I'm not sure if saying this is a good thing. Kind of discusting for me really but I had a family member tell me in the beginning (since I haven't had sex) that I caused it by shoving something up inside of me in the "V" spot. Otherwise, I heard I was lazy. Just using it as an excuse to get of work. I'm a retard since I get the SSI. They didn't believe since I actually tried to have a little part of life by gardening or walking. Was left out on vacation and trips because the people did not want to stop so I could go to the bathroom. So I held it. Had relatives that didn't like that I had to use their bathroom more then once. So I held it. There hasn't been any one time which has made any of my family believe me and I have given up on that. I would like to see a nation wide survey on people who don't have this and why they just don't believe but yet they believe a person is diabetic or something else?

[snowgirl]

coworkers who were RN's that told me they had other things in their life then to hear about my disability.

My father who thinks because I have been out of work one year now and on disability since Sept 11th 2007. He goes to FLorida in November I am living at their house and when he returns in April he expects me to be over my depresssion that I have made no progress. He told me the blank blank get rid of my therapist as he is doing me no good.

If I have a day like today I had a hyrdo -dmso and laparoscopy he asked me today when I was going to get out of bed. Today is Wednesday > I had the procedure on Monday and got home from U of MI yesterday Tuesday afternoon.

IF I have a bad day and want to stay in bed with a flare and pj's I am perceived as being lazy. My father is the only family member to treat me this way. Mind you he also has a chronic lung illness and also went through workmens comp and ss disability as well. He seems to have forgotten.

OH I get told everyonce in awhile how much SS check is more a month then his. He doesn't add his pension to that which is more then mine. I don't get a pension at 45. Rude comments I have had to discuss in therapy with my pain psychologist.

But to just have surgery on Monday and ask me when I was going to get out of bed. I said I just had surgery and he said don't get hufffy with me.

see I have to live at home as I am paying as we all have heard it on this board 700 a month for Cobra or I would be living on my own.

He doesn't understand the pain clinic either another story there. Just the one person in the family. Younger sister and brother 39 and 45 very supportive and my mother 73 along with her 94 year old mother also supportive.

Hope this helps.

Vicky

[leelee88]

Jill,

This is interesting.
While my husband and his family have been very supportive and have tried very hard to meet my food needs and have just been really understanding. It has not been like that with my family. I have tried very hard to explain this disease to them Esp my sister the one who is closest to my age. She also is the one who has suffered often from UTIs so you would think she would understand. But she does not. She thinks it is all in my head and that if I would just go back to work it would get my mind off my "so called disease"..Or if I would excercise more I would feel better. And makes really sly remarks all the time...
I have even sent her pictures of an IC Bladder and literature. She just refuses or does not want to believe that IC is incurable.

My mom kind of believes me, but it was not until recently I made her understand. She has been having symptoms of IBS and she was telling me how it was making her feel so bloated and cramp really bad. I explained to her that is almost the same kind of pain I deal with, With IC, I said my bladder goes into spasms just like you colon does and it continues until my flare eases. She said dang I didn't realize you were having that much pain!
So I guess no one can really relate until they walk in our shoes. Or is a chronic pain patient.
To be honest I cannot say I would understand if I was not a IC patient. I would be passionate to the one suffering. But it would be hard to understand something you cannot see. And most of us look so normal on the outside..It is like our normal looking body has camouflaged our disease..

[sassiegyrl]

What I have been facing with my family is that they want me to see another doctor "to get to the bottom of this." They just don't realize that this can and is an on going problem.. My family doesn't realize(remember) that I have been to many doctors about this, along with many tests and my current doctor is the one that diagnosed me with IC.

I do understand and support the idea of needing a place to vent. Such as this board. It is nice to know that you are not the only one going through this.

Jill thanks for all that you are doing!:angel:

sassiegyrl

[woman9469]

Where to start? I've been told I make up my illnesses in my head (diagnosed illneses), that they are all I talk about and I make myself worse by talking about it and reading up on them!

Oh, I especially like the "you are always sick" line. Does alot for your self confidence.

[sassiegyrl]

Yeah I have been told that it is all in my head by a doctor that is a close friend. Like I would intentionally make this up. I agree, it sure doesn't do much for the self esteem.

[snowgirl]

Ihave been told by my father I bring a lot of this on myself- in my head. Vicky

[Ashley911]

My sister compares me to our cat that has issues with her bladder and sometimes pees out of the litter box, she jokes "ashley your just like zoe"

AND I HAVE NEVER HAD AN ACCIDENT!

[crkshnks79]

I have been dealing w Chronic Pelvic Pain for 4 yrs now and it has steadily gotten worse . While my fiancee has always been supportive , our families at first have not . My family ( my mom in particular ) kept telling me its in my head , or convienent when I "didnt want to " work or go to family events . My mom finally has turned around when she saw me collapse from the pain and I was unable to get up , I just laid there and shook . My fiancee's family at first ( particularly his dad ) said that I make these things up so I dont have to work cause Im lazy and wnt his son to do everything . My dad ( ironically ) has believed me from the start and now goes to all my doctor appt w me because he's tired of seeing me in this much pain and discomfort and he thinks my doctors are being neglectful . It hurts very much when the people that are supposed to be supportive in your life are anything but , alot of times they not only hurt your feelings , they hold you back , make you doubt yourself . I dont wish this on anyone , but if the shoe was on the other foot how quickly would they want comfort and understanding ?

[waterflow]

Oh, I hear that all the time too. Find another doctor who knows what they are doing because it is curable. Everything is curable. Excuse me but if everything is curable why are there so many sick people in the world??? I have not laid down during the day in I think 3-4 years. No matter how much pain I am in I don't. That only starts the whole thing up again. Or they say just lay down until you feel better??? Sounds like we all go through the same things just some worse then others. What happened to mankind? How did we get to be such insensitive people? We wonder why there are so many wars in the world. If families cannot get along how can worlds? Someone should write a book about the frustrations of having IC but then that probably wouldn't help either.

[snowgirl]

for me Rn friends and co-workers that I worked with for 20 years were the worst culprits. Talking about you behind you back when you called an fmla day but I could work circles around those sittiing at the desk and I guarantee you my producitivity was more then theirs. RN's who knew nothing about IC still don't only that I lost my job because of it. I worked with them 20 years- do you think they call and see how I am doing? Only a few real good friend your true ones do. They know I am single and had to move home with the folks. They know this outrageous bid I pay for Cobra. They also know our nurses union was not worth the 50 bucks a month or a damn when it came to helping me find a job I could do. My how coworkers of 20 years have passed me by. I was always the one to get cards for everyone , flowers when someone had surgery, arrange for funeral donations for their loved ones it was me.... now I am gone and in their mind so am I. So , I would have to add friends to this list of family. For me the friends were worse backstabbing etc.

Vicky

[ICNDonna]

I have to say my mother never did accept that I have something incurable. She's gone now, but she always believed that if I'd just see a different doctor I would be cured. I finally just gave up and didn't discuss it with her.

Donna

[Berkshire Road]

#1) My mother has arthritis, and she truly believes that she is in as much as, or probably much more, pain than I am in, but that she is able to tough it out while I lie down and rely on medications. She refuses all kinds of treatment options for herself, for spurious reasons, because she has always had a martyr complex. Meanwhile I have been trying treatment after treatment for over four years ... yet she thinks I've given up so easily. So many sly little digs. And believe me, no one can lace their conversation with innocent-sounding but oh so hurtful little remarks better than the French -- no one. My maman is a world champion. It's sooo French, it's almost like a caricature of French-ness, that it might be funny if it didn't hurt so much.

#2) My older sister helped me prepare my SSD application, which was nice of and made sense bc. she is in fact an attorney who works primarily with SSD and SSI cases. So now she knows a lot of details, like what medications I take (or more precisely, what I was taking at the time of the application), and she uses that information to torment me. "You don't know what you're saying anymore, you can't know how much you offended everyone at so-and-so's funeral bc. you don't remember anything you say -- I know, it's because of The Drugs. In vino veritas." Meanwhile I've spoken to "everyone" who was at "so-and-so's" funeral and I know that I did not offend anyone, or have any conversations that I don't remember.

She makes repeated references to "The Drugs," and how they've made me "stupid," or "lazy," or "childish," or "dependant," which is so bizarre considering that she drinks heavily and freely admits to regular marijuana use. We are in our forties but my sister has never really grown up emotionally, and now she's using this information to pick fights with me, and spread rumors about me. What she doesn't know is that I've been on narcotic painkillers many other times over the past eleven years, during which she somehow never noticed any aberrant behavior or inappropriate conversation. I haven't spoken to her since January and have no plans to re-open communications. I feel violated that I gave her this information in an environment of trust, that she was helping me, and now she is using it against me.

However, in fairness, I want to add that my father, my other sister, my husband, and my kids have all been sympathetic and understanding and helpful as needed, even before I got a diagnosis.

I am interested in this article, but I would also like to see a follow-up article on ways that our families and friends have shown their understanding, or gone out of their way to support us and help us.

[mayray]

My family abandoned me when I had IC until they found out years later "what it really was." I have my story on this site, but for some reason, it has not been able to be accessed for about a year. I also have it on freewebs.com/teresalinton for those of you who are interested. Believe me, I fully understand this feeling. I, at one time, thought I may have to live on the street when I lost my job of 17 years. It is a nightmare.

[Trishann]

Jill, not so much my household family but outside of the household family. I stop making promises that I will be at an certain event now: I would tell them I will try to be there. I think they can't understand, just out in nowhere, pain can come on suddenly where it is impossible to go anyplaces. This is the hardest thing, "I miss my nephew wedding", I had a major flare out of control. I was heart sick over it. How do you explain to those that don't understand? It is hard to forgive yourself but what can you do.

I do believe my nephew understood because he is a doctor but don't think others did understood.

Hugs, Trish

[snowgirl]

teresea

can't find it on freewebs.com. Vicky

[Kirs10]

My mother doesn't believe that I am in pain"she walked on a broken leg for 20 years and never took any pain medications what is wrong with me." My mother in law says that she has MS so she is in "REAL" pain. And as good as my husband is is thinks that if I just got off my butt and moved more that I would feel better, most of the time then he is real good for a while but inevitably he always says that sooner or later. The only person that has any compassion for me is my sister in law because she has it too. Though hers isn't as bad as mine.
Hope this is helpful.

[waterflow]

You know I never wanted compassion. Not once nor did I want anyone to do anything for me. Would have been nice to have some help going to doc appointments and hospital but I didn't care. Did it all by myself. All I wanted was to be left alone to live what kind of life I could live now with this. Maybe after someone writes a book on this (hoping for a big novel) we could just hit all these so called family members over the heads with it. That way it could finally sinnk in their heads?? What do ya think?

I to hear how "they lived with this or that. How they went through labor. I don't know what real pain is". Same old same old.

[snowgirl]

Mary

I like the part about hitting them over the head with the book after we wrote it that is funny. VIcky

[darlene]

Like many others here, my mother brings me the most grief. she just doesn't believe that I could be in more pain than she is. she has arthritis, but I have it too. The IC pain is so much worse than the arthritis pain, that I can't begin to compare the two. I also have Crohn's disease, which causes horrible intestinal pain. Last year she had a double lumpectomy for breast cancer. I went with her to many doctor appointments, and filled out all of her medical forms. My great husband brought her to the hospital for her surgery, because I was in too much pain to go. She never asks about how well I am doing as long as I am helping her. If I am helping her, she has no interest in knowing how I am doing. If I say my bladder burns, she will say hers does too. She can go for many hours without using the restroom. She can fly without the need for the restroom. She has never seen a doctor about her bladder, so she thinks she is tougher than I am. Most people don't understand this disease. The reason for this is simple. Information about IC isn't out there for the public. Many doctors and nurses know nothing about IC. Until this changes, our problem will continue. It just hurts more when my mother doesn't show the slightest interest in my condition, after all she is my mother! I am 61, she is 87, so it doesnt get better with time!

[LuvMaui]

The people who know me, believe me. But people like "DOCTOR'S" seem to have this look on their face like another middle aged woman looking for attention. It burns me up. But my family does believe me, they just get tired of the IC interfering with our lives.

[profhucklebee]

The most recent and worst for me (so far) would have to be my friend's husband asking me if there wasn't anything "natural" I could do to heal my bladder.

Then the second insult to injury would have to be my step father, saying to my sister that he's glad I finally have something to be humbled by, since I have always led the 'ideal life'. Ideal my eye!! I have been in excruciating pain for the last eight years!! Humble? You try and be proud sitting in the sporting good's store bathroom for 2 hours in terrible -scratch your urethra out- pain!

And the third most recent "family acting badly" episode: My mother saying she is glad I finally found somthing to take the pain away so at least now my kids don't have to spend so much time following me from bathroom to bathroom--now they can get on with thier own activities!

Wow.

Family members sure know how to sock it to ya!
Or maybe its just me... I suppose I could just be a great walking target. Probably having the ideal life sets you up for such pitfalls and character assassinations.
:evilsmile:evilsmile:evilsmile

[Pam39+]

My family is very supportive. Unfortunately my mother and oldest daughter also have IC. My husband never ceases to amaze me with his love for me. I have had some friends (not the close ones) that have made a few comments or try to give you a quick fix (Like drink cranberry juice!)LOL I think I have been the most upset with doctors that either don't believe or try and force some snake oil treatment on you or refuse to even try and help. :)

[samandmichelle]

My parent's have been very supportive of Michelle throughout. Mom's got MS, so I have a feeling she understands the frustration of doctors visits, uncertainty, and lack of cure. It took a little while for my Dad to understand, but I think he's caught on.

Her sisters and mom have alway's been supportive, as well. Her oldest sister has endometriosis, and the middle sister had a pseudo-tumor, so they've all got medical issues.

Her dad on the other hand has been an ass about the whole thing. He keeps insisting that it's all in her head, that it's all just stress, and that she needs to just get over it. She's been to therapy, she's finally got a diagnosis, she's finally on some meds. She's starting to feel better.

We were out with him to dinner the other night, and she was trying to find something that she could eat that was within her IC diet, and all he did was shake his head and insist that it was nonsense. He told her that she needed to get a new doctor, because whoever "convinced her of this diet" was "crazy". It's hard on her - to not have your own father want to support you in getting better, even if it doesn't make traditional sense. It doesn't have to, because it's helping. I've tried to explain it to him, I've sent him tons of information, I've offered to sit down and go over all of it, and he just doesn't seem to care. In his eyes, he's right, and he'll be damned if anyone will convince him otherwise.

I'm writing this from work - so I'm sure she'll read it, so, I love you honey. :angel:

-Sam

[mary124]

My Mother who really never understood this illness until recently (I was dx with this in 1992) always thought it was in my head --- My Dad however, really didn't understand it but knew there was something wrong with me which is why when I called my parents I would make sure my Mom wasn't home -- my Dad would ask how I was feeling, etc. Recently, my Mom was home and I didn't know it and she said she was trying to call me all day and I told her I had a doctors appointment appointment and doing other things and she said what is wrong and I told her and she said "oh, are you ill??" I tried to explain to her and I think it finally clicked with her- she said that I probably had this when i was in my teens- I told her yes but she wouldn't pay attention to me and take me to the doctors and besides it probably wouldn't make a difference as they wouldn't (couldn't help me at that time). I did send my Mom some stuff on IC and she said "WOW- you really are sick- no wonder you don't eat half of my cooking any more!!"
As to co-workers, most of them know what is wrong with me, but since we do our own jobs no one really complains. I am here pretty much of the time, a lot of them thinks I'm a "trooper' for being here" as I am hardly out sick and when I am sick its not for my IC.

[motherof4]

My husband and kids are great,even my family are great.But my in-laws are from Italy and think that everything can be solved by a bowl of pasta and coffee afterwards and can not for the life of them understand why I can't have alot of foods.I really think that they think that I am making it up or looking for attention,forget my husband's grandmother she is the worst one but yet she can't have anything with nuts but she questions me over and over again about why I can't have certain things I am so sick of it.Even my brother in law he is constantly saying to me I don't understand why can't you have this and that why isn't there any cure why haven't I heard of this BLAH BLAH BLAH.It is at the point that when I go there for dinner no-one takes me into consideration and there is usual nothing that I can eat,I have left the table in tears at times.And forget if I bring my own food that would be insulting,so I am damned either way I do eat somethings and take pleny of prelief and suffer for it afterwards but sometimes it's just not worth the fight of trying to explain myself anymore.I personally feel like printing out what IC is and handing it to each and every one of them..........

[snowgirl]

My parent's have been very supportive of Michelle throughout. Mom's got MS, so I have a feeling she understands the frustration of doctors visits, uncertainty, and lack of cure. It took a little while for my Dad to understand, but I think he's caught on.

Her sisters and mom have alway's been supportive, as well. Her oldest sister has endometriosis, and the middle sister had a pseudo-tumor, so they've all got medical issues.

Her dad on the other hand has been an ass about the whole thing. He keeps insisting that it's all in her head, that it's all just stress, and that she needs to just get over it. She's been to therapy, she's finally got a diagnosis, she's finally on some meds. She's starting to feel better.

We were out with him to dinner the other night, and she was trying to find something that she could eat that was within her IC diet, and all he did was shake his head and insist that it was nonsense. He told her that she needed to get a new doctor, because whoever "convinced her of this diet" was "crazy". It's hard on her - to not have your own father want to support you in getting better, even if it doesn't make traditional sense. It doesn't have to, because it's helping. I've tried to explain it to him, I've sent him tons of information, I've offered to sit down and go over all of it, and he just doesn't seem to care. In his eyes, he's right, and he'll be damned if anyone will convince him otherwise.

I'm writing this from work - so I'm sure she'll read it, so, I love you honey. :angel:

-Sam
Michelle's father sounds exactly like my Dad He doesn't comment on diet but he has the same thinking= is he possibly a bit controlling like my father is? vicky

[branmun]

1) Being told to put on a diaper and push through it even after stressing
that I did not have a problem with leakage only 24/7 urge.

2) Being asked, "Now you're going to feel good when we go do this right?"
Like I can choose or know when I will feel better.

3) Asking why I prefer being sick over feeling well

4) Thought of as lazy or being a baby

5) Thinking IC is curable or wondering why I'm still not better

[samandmichelle]

Michelle's father sounds exactly like my Dad He doesn't comment on diet but he has the same thinking= is he possibly a bit controlling like my father is? vicky

Very much so.

[Mothergoose]

I've heard lots from my family over the years. But the one that tops it for me is: "If we can get our son well enough to go on a holiday, we will go somewhere, you will be find if we are on a holiday."

I had been dreading the thought of going on a holiday, for my husband this means at least a month to two months, I can handle a couple of weeks easy.

Now addimttily I brought this on my self, when we go on holidays no matter how bad things get I try to never let on that there is a problem, I try not complain at home either but this is different. So we did go but I didn't complain the whole time, but I didn't agree to do every thing that he wanted to do, and when asked why I would tell him before I would just go do it and then suffer the consquenses.

Mothergoose

[harleyk]

Does anyone have problems with their spouses thinking that you should be better? If I have surgery or bladder treatments, he will help me. When I am back at work and flaring, there is no way that he can help!!! What should you do in this situation?:angel:

[JenAZ07]

For me I think Drs have been the worst. My IC symptoms started right after delivering my son who died (pg terminated at 22 wks due to fatal chromosome abnormality and my medical issues)….and every dr I saw after that…..ER, Ob/Gyn, GI, pain dr…..thought my pain was reaction to my emotions and thought it was all in my head. I had one ER dr (who I saw multiple times) tell me that it was all in my head and my emotional trauma was manifesting itself in my pelvis (b/c she couldn’t find anything wrong)………refused to give me pain meds…….and tried to give me the name of a support group. I had one ER nurse try to tell me she knew the pain I was in b/c she would get horrible ovulation pains. Yeah....like it is anywhere near the same.

My Ob/Gyn (after she performed surgery on me) told me that I had a love/hate relationship with my uterus and I needed to get over it…that it was all in my head and that I was making all this up because I was afraid of getting pregnant again. I had a pain dr (1st one I saw) and uro both tell me it was all in my head…..even though they were the first ones to suspect IC. My current pain dr says I need to “will” myself well again…….yeah like I haven’t tried that….and I need to empower myself to get well again. Again...I would if I could. He says that I am too young to have anything chronic wrong with me…..I am almost 30.

My family doesn’t really know much about it. My dad dated a woman who had a very mild case of IC…so he knew a little….and thought that all my symptoms would go away if I just cut out coffee like she did. He used to call me a druggie b/c I take pain meds every day…but after telling him how this hurts me he tries to watch what he says…but it slips sometimes. My mom....forget about it……if it doesn’t mean she is getting the attention, she doesn’t care to talk about it. Meaning…unless I am dying and she can get sympathy from her friends, etc. about her poor daughter who is sick…she is not interested. My siblings don’t know...they know I have been sick, but never ask any questions. Most of my friends don’t really care to know….they know I have had multiple surgeries, but they never ask how I am doing or ask me any questions about IC. I think they all think it will just go away. Some do know and are sympathetic, but they have no idea about the pain. Some have grown to have an appreciation and compassion for chronic pain patients through me talking and explaining things to them. One of my friends is also in chronic pain (facial/jaw pain) so she totally gets it.

My bosses have been amazing!! Never complained about any dr appt I have had….and I have about 2 a week. Never complained about me taking time off to have surgery, etc….and next Friday will be my 4th surgery in the last 11 months. And even my secretary….when she orders lunches….tries to take the IC diet into consideration. She is great!! Some of my co-workers know I have IC, but they really have no idea what it entails…..some of them told me I needed to stop taking pain meds b/c I was going to get addicted….of course they didn’t have any alternatives as to what I should do for this daily relentless pain….so now I just lie about what I take. When talking to a co-worker about the possibility of asking the judge (I am a litigation attorney) for additional bathroom breaks while in trial, she said I would just have to suck it up and hold it.

My husband, bless his heart….has been great overall. He believed me from day one that something was wrong and has come to every dr appt I have asked him to. He gets too frustrated with the drs though…so most of the time I leave him at home. He has stepped up and started doing more chores around the house b/c he knows I am in pain everyday. There are those times when he does call me lazy when all I want to do after working 55+ hours during the week is sit on the couch with my heating pad…..but overall he has been good. And sometimes he tries to tell me he knows exactly what IC feels like b/c he gets bad knots in the muscles in his back that hurt. I have had back knots....nowhere near the same pain....but I choose not to fight with him over this.

My puppy pees a lot too…..I think it is sympathy peeing!! :puppy:

[Jess82]

My first urologist with all my bladder problems blew me off saying that I must have a resistant case of Chlamydia....which I have never had before, which didn't show in any labwork, and I am in a long term committed relationship. He was saying this maliciously, laughing at me, and saying it was all in my head.

My mother recently on our way to a Relay for Life event for cancer, told me that when we got there I would "really have my eyes opened to what some people have to deal with." Yeah. Because I'm not going through anything.

Just an incurable disease...with no solid markers for testing and diagnosis, almost no FDA approved treatments, no special hospitals with specially trained doctors- ever seen an IC department at your hospital? Grrrrrr