How have some of you veteran ICers handled the family?

[Julie B]

I know I get a lot of roller coaster stuff around here, with teenagers and the hubby and I don't think some of the in-laws have a clue about this IC stuff.

What is your story? How does your spouse handle it? Your kids? How long has it taken them to understand?

[LM]

Originally posted by Julie B:
I know I get a lot of roller coaster stuff around here, with teenagers and the hubby and I don't think some of the in-laws have a clue about this IC stuff.

What is your story? How does your spouse handle it? Your kids? How long has it taken them to understand?

I would also be interested in hearing how anyone got their family to shift towards a more supportive role. My family story is not so good: they don't believe me, they think i'm just overreacting. They'll say things like "Laurie (my sister) had a bladder infection on her honeymoon and she still went on with her life" I wish there was some way to get them to understand this is real. I wish it was a disease they could "see" or had a name they recognized. They think it's psychological, saying the bladder is an "emotional" organ. Yesterday I had to pick up my dad's car to go to a doctor's appt and he said to me critically "why are you walking funny" and I said "because i don't feel well" and he rolled his eyes. There are more examples, but you get the picture...I have tried to show them literature, etc. but they either say this doesn't describe you, you probably don't have IC (b/c i don't have every symptom they list), or they say well anyone can give in to an illness, some people just make a career out of being sick. Maybe I should give up trying to get them to understand but it is so important to feel like your family is on your side. It is bad enough dealing with this disease but then to feel blamed for it. Maybe a leopard can't change its spots and it's just not in them, i don't know....

[ICNDonna]

When I was being diagnosed with IC, I had two big problems --- adhesions that involved nearly all of my abdominal organs, plus the IC. My husband has been 100% supportive all the way. My children didn't totally understand when they were younger, but they have learned more about IC now and I also have their support.

I feel extremely grateful for my family.

Donna

[BrendaD]

I feel the same way with most of my family and friends -- they just don't get it! Sometimes I just quit trying to explain as I am the one who has to live my life, not them. But then again, none of my doctors really gets it either. The only way I could imagine explaining it is maybe to someone who's had some type of internal organ problems (i.e. heart, liver, spleen, appendix). If they can remember how painful it was -- well the bladder is also an internal organ and when it isn't healthy, there is extreme pain, just the same as with any other internal organ. But, most people just don't get it -- they can't feel their own bladders and they can't imagine how a bladder could cause that much trouble. I don't know why it is that people can imagine a painful appendix or spleen, but they can't imagine a painful bladder. You wouldn't say to someone who's just had a heart attack, "you just have to get on with your life" would you? I struggle with the same issues as you -- I guess all we can do is try to continue educating people, but overall we have to look after ourselves, as I just don't expect others to understand.

[ragsmom]

I know what all of you are going through.I call it the invisable disability.God bless my husband,he is really trying but sometimes I really get so frustrated dealing with him.Today we went to look for a car for him and we went to the Honda dealer looking at a CRV.Of course he wanted me to sit in the drivers seat and wanted my opinion.Well,you know that SUV's are a little higher to get in.Today--Pelvic pain and tightness,does not go with CRV's.I am five feet-4inches,so after a lot of moaning and groaning got in.Do you want to know what he asked me?Did you have a problem getting in?Hello,is anybody home?It is so hard for people to understand what we go through,sometimes I am so tired of having to explain why there are things that I cannot do as I once did.I know in my heart that he is trying to learn about IC but if it is invisible,then it does not exist.At this point we need to be our own primary care giver and hopefully one day the light bulb may go on and our family and friends will finally realize what we have had to deal with 24/7.I stll have not given up on hubby yet!!Healing Hugs to all,delores




[This message has been edited by ragsmom (edited 11-03-2000).]

[Julie B]

I have been in a stage lately where my family has been expressing their annoyance with the disease. I do try to remind them that I am MUCH better than I was a few years ago, but when I need to rest I don't have a choice. I give more than 200% the rest of the time to make up for it. It is going to be a slow process, as Donna said, as my kids get older they understand (and accept) this a bit more. I try to draw an analogy to someone who is a diabetic, or someone with arthritis, you get the diagnosis, educate yourself as much as possible and live your life the best you can. My cousin married a brittle diabetic, and both of their pre-school children are diabetic....I asked her how they "do" Halloween and she said she gives them a bit of candy but they know that candy is not good for any kids in large amounts and can make them sick...

I would like to see this topic continue for a couple more days. I think most of us can relate to the ups and downs....you are all fantastic... Julie B

[Teri]

You're gona love this one When I'm in a flare, I have to make sure that my doors are locked and my shades are down cuz my father-in-law will do his best to try to get in to see how I am. IF I missed a door, he says, "Sorry, I didn't know you were resting". I could throw rocks. I have talked to my hubby a million times about this. I have talked to the inlaws about this. The lights on and there ain't nobody friggin' home Then, I'm suppose to apoligize for being a bit*h to my inlaws, yea, right, about when hell freezes over. THIS IS MY HOME. THIS IS MY SAFE PLACE. IT'S MY JOB TO KEEP MY SAFE IN MY OWN HOME - NOT TO KISS THEIR BUTTS WHEN I CAN'T EVEN STAND STRAIGHT.
I could write a book on this subject. Maybe even have a topic to see who's inlaws did the nuttiest thing for the week maybe that would make it a little more bearable?

[Julie B]

Oh wow Teri, you and I have talked about this one, I think the "in-law" situation is sometimes the hardest because we don't disclose as much to them and this potty talk can get pretty personal Sorry they are so rude....maybe a sign on the door "large attack dog on premisis, when owner is asleep, dog is trained to attack anyone?" love and kisses, julie B

[DebbieB]

Hi Julie:
I have a wonderful husband,that has lots and lots of patient and wonderful support..
He has been there for me over the 18 years that I was so ill, he has drove 2 hours away to get files for me from other Uro in a different city because my family doctor would not sent for them...
He has been through all my ups and downs and has been beside me all the way..he is my love of my life forever!!!
My kids, were very young and now both in their teens, have always known me to be ill and grew up knowing that, they are so patient and kind and also support me as well..
They are so happy now that I am feeling good these days with the InterStim Implant , have seem me come from a bed to wanting to hang out with them, but no way,( teenagers) they don't need me anymore..
I feel so bad at time that I was not there for them all the time when I was ill , but the love I gave them when even I could not sit and was in so much pain, I know they knew that I have always shown them my love for them..::::tears in my eyes:::::::
I did what I could for them !!
I am the lucky one to have a wonderful husband and children and I thank GOD each and every day of life for having them

[Jean from GA]

Dear Julie,
Family members can be one of the most exasperating components of this IC puzzle. My husband has been wonderful from the beginning - and we're to the point now that he does all the grocery shopping,etc. and cooks most nights. I had to retire two years ago and whenever I express my wishes that he didn't have to do so much for me in addition to his job, his answer is always, "You'd do it for me, wouldn't you?" And you know what, I would! My three sons are pretty sympathetic, but that doesn't stop them when they need something done for them. I've learned to "just say no" if I don't feel well. The biggest obstacle I've faced was getting my mom past the point of feeling that just one more doctor, one more treatment, or one more medicine would "cure" me. I gave her a bunch of material to read and sent some to her sister who's an R.N. That has helped tremendously. She has always been caring and helpful, but now she knows that when a flare comes, we just hold on to our socks and wait out the storm. Fortunately, I have a wonderful uro who believes in pain meds and is willing to work with me on family situations. Good luck with yours. It's hard enough to be sick much less to be sick and feel guilty, too! You have to give yourself permission to be sick when you are sick!
Best wishes,
Jean

[GloryB]

My mom was the first to understand, since my diagnosis earlier this year. She also has had a chronic disease for about 30 years. I didn't have as much compassion as I should have for her until my IC came along. She calls everyday and asks what my pain level is. She seems never tired to talk to me no matter what time of day or night I call.
My husband has been nothing but a gem, except he treats me like I am made of glass. When I had my bladder suspension surgery, he not only cooked (he's the cook in the family), he cleaned and washed clothes. He still insists on doing most of it. He doesn't realize it, but when he is at work, I hardly do anything, so he thinks that when he is home from work and sees me do anything, he says I am doing too much.
As for my daughters, the 24 year old daughter is very supportive. She even attends the support group meetings with me. My 20 year old daughter never talks about it with me. If I say anything, she never comments.
I'm not complaining about them. I could not ask for better daughters in the world. They are loving, respectful and courteous not only to me and their dad, but to others. They both have gone through their share of illnesses too.
However, my in-laws are a different story. I have never gotten along with my mother-in-law. Something about her and my mom never got along in school. So she carries that over to me. When I had my surgery, she did not call for two weeks. They live about 10 miles away. She never asks how I feel. Oh, well.
So far, my dear friends (all two of them) are very supportive. They also, like my mom, try to read and find out as much as they can.
My dad, god bless him, is still like a little boy. When my mom comes over to visit, my dad is outside playing with the dogs. My mom says that she doesn't tell him anything. She says that he probably could not handle it.
Well, sorry to babble, but I just lost a relative whom I took care of for almost 25 years. She only dealt with me and my daughters. Everyone else pretty much wrote her off. I am taking care of the funeral arrangements. She was 91. One relative said that I'm talking too much so that I won't cry too much. I did not know her side of the family. She was my grandmother's sister-in-law. No one every visited her for about 25 years. Sad.
Love,
GloryB