Coping with unsympathetic family

[Myah]

My husband is a wonderful man. This is the first major conflict in our marriage. He doesn't want to know anything about my IC. It's very difficult not being able to discuss this with him. If you are in this same situation how do you cope with family members who do not take it seriously?

[work it]

Hey Myah, I am sorry that your husband is not very understanding. maybe he doesn't realize how serious IC atually is or maybe this is his way of dealing wih it. Kinda like out of sight out of mind. Has he been to any of your DR or uro appts? That might help, and if he has any questions he can ask the Dr then. Invite him on the website with you. Leave IC information around the house. I have some info hanging on the fridge because that is where my family tends to "hang" out then while they are eating or drinking they look at the stuff on the fridge. I hope it gets better for you through out time.

[Katrina]

What I do to get the point accross is explain that IC is like Crohns disease in the bladder and that the pain of IC has been compared to the pain of cancer. Than I print info from ICN and ICA for the family member to read.

http://www.efibro.com/read.php?f=59&i=1096&t=1096 This letter called letter to the norms I find helpful in finding a way to comunicate what it is like to have a chronic painful illness to those that don't...just change a few words to help it fit IC.

:grouphug: It takes time! :grouphug:

[Sarojini]

Hi Karen,

I'm sorry your husband has been less than understanding :( I think the others have already given you some good advice. Perhaps have him read some info on IC (the ICA - http://www.ichelp.org - has a new book out that is just $7.50 and is designed to give to spouses and other family members to explain IC and what kind of support IC patients need. You could try that, or simply print off some info from the Patient Handbook here). Also, visiting the doctor with you and having the doctor explain IC helps a lot -- my husband has been to the urologist with me and I think hearing the doctor speak about it helps him realize that it's not just me blowing things out of proportion, and that sometimes I really CANNOT "hold it" the way other people can.

Also, sometimes it takes men a long time to come to terms with this kind of thing -- they like to stick their head in the sand and just hope it goes away. I think after a while he will come around. He will come to terms with it in his own way -- unfortunately, most men do not come to terms with stuff the way women do, which is usually through talking. It may seem like he doesn't want to listen, but I think perhaps he's just overwhelmed and is just trying to deal with things inside. Men do that. I think, when he gets his own feelings in order, he may be more forthcoming and willing to talk to you and support you.

:grouphug: I hope it gets better for you!

[ICNDonna]

I think you've been given some good advice. He may be thinking that what you have is a temporary thing and that if he ignores it, it will just go away.

I do suggest that you leave some information where he is sure to see it --- if possible make the written material in short articles that can be read in a few minutes so he can read without feeling overwhelmed.

Donna

[mayray518]

He's not so wonderful if he doesnt want to know anything about your IC. Remember in sickness and in health. I know the disease is hard to explain because no one can see it but there are so many booklets that explain it and the effect it has on a person. I personally did not have an understanding family when I got IC. This was in 1992 and they now understand what it is, thank God for this site. Just because its fairly rare and happens mostly to females doesnt make it hurt less. Katrina, I always refer to IC as Crohns of the bladder also when I am explaining it to people.

[kadi]

Here is an article that is short & gets right to the point. I gave it to several family members when I got sick & they didn't "get it"

www.barryyeoman.com/articles/ic.html

Wishing you better days soon!

[mayray518]

I read that article before and it brought me to tears. I know exactly how that woman felt. If no one understands after reading that, there is nothing else to say.

[Babs RN]

Myah,
My husband is improving in his sympathy but since diagnosis has not been supportive. He is in the Army, has been really sick maybe twice in his life, in tip-top shape. He is currently in Iraq and has realized some core issues with this illness, how some are very important and some not worth causing strife over.(if you want to talk I can give you some specifics, PM me! :) My inlaws are 200 miles from where hubby is stationed and my mother in law is convinced that the only reason I get sick is that I have poisoned my body with medications and procedures, and that if I go off everything and quit having cystos and hydrros(which help me alot)I will get better. She watched an Oprah episode about surbuban moms addicted to prescription painkillers and has been flipping out ever since on the subject of pain control. My parents and brother are awesome, but my brother lives in Georgia and my mom and dad live in central Florida. Lindsey and I are going for the summer. They are very understanding(had their moments while I was a teenager with pelvic pain--that's in the past)and my brother and I are exceptionally close.

Please, please let me know if you need to vent. I have been there with minimal family support.

Warm hugs,
Barb :grouphug: :grouphug: :kissing:

[christinaw]

Hi there Karen,
I too have an unsympathetic family. My spouse and I never had conflict until I fell ill. He has been sick maybe once or twice in his life. He returned to work 2 days after having shoulder surgery, and drove himself 2 hrs away for rehab/therapy after knee replacement. So, one would venture to say he doesn't understand chronic pain, nor does he want to. I went from being a vibrant 28 yr old to a bed-ridden 29 year old. He has lost his wife that he knew, and I think sometimes he is grieving that loss more than not understanding my illness. It is true that men are from mars and women are from venus. They want to fix things-when we go to our spouse with a problem they intend to provide a solution-just think back to when you've gotten frustrated b/4 you were sick b/c you just wanted them to provide you w/ a listening ear and instead they offered solution. Men are programmed to fix things coming out of the womb, and when they can't fix it - they buck and kick and scream. Chronic illness cannot be fixed. So, maybe your husband will have to grieve the loss first, and then come around to understand what he can fix and what he cannot. And accept you as you are now, not as you were. And if he doesn't, and can't reach that point, then that is another issue entirely.
I hope that you can reach resolution together-and if not, then just know that it is NOT your fault, and that you must surround yourself with positive energy-chronic illness is depressing enough without involving negative energy 24/7. But give him time-give him time and try to work through things. He must make an effort and attend dr. appt. and let the dr. explain your condition. And, even after that denial kicks in and he still may not accept it for a long time.
But if he sees you educating yourself and coming up with a plan for life then that may help. If you feel and appear nothing but hopeless then he will more than likely also become hopeless.
I hope that helps-just my 2 cents. I will pray for you-
Much love and belief,
Christina

[fireflicker285]

My husband is kind of funny in that he thinks if he pretends it is not so it won't bother me so much. So he thinks he is helping the situation by not saying much of anything. I don't know if this is the case with yours.

Perhaps tell him that one of the ways to help you is for him to learn a bit about the disease and understand what you are feeling even if he cannot change it.

[mayray518]

Lets face it the best place to come for support is right here--we have all felt the pain of IC and know exactly what it is like, the emotions it brings on, etc. I used to say if only they (meaning family, friends) could get it for a month and see what it is like. Not to be mean but just how they could see how devastating it is. And you always have to keep explaining it no matter how many years of remission you have. I have been feeling well for 5 years and recently went back to work but I can remember a friend of a friend who had the nerve to say "Why dont you stop being a dirtball and get a job" because I looked normal. I didnt take it lying down. I sent her a description of IC and an explanation of how remissions can come and go and "if I went back to work and lost my disability and the IC came back well that would not be too smart." The next time I saw her she just stared at the floor. We have all suffered enough and being nice about it at first is one thing but if someone continues to say ridiculous, unkind, uneducated statements about it I let them have it. This disease is as real as cancer, MS, crohns and a whole list of others.

[DeannaM]

Kati,

The article was first published in Self Magazine. When a friend gave me the magazine, I copied the article and passed it or mailed it to unsympathetic family members and former friends. It really hits the nail on the head about what IC can do to ones life. It certainly got the attention of a few of them!! My father-in-law was the most effected by it. He completely changed his attitude toward me and my battle with IC. He, next to my huspand, is my biggest supporter. If anyone questions if its a bad as I make it out to be, he really puts them in their place!

I had a boss who thought it was a frequency problem and told me all women who have kids experience these problems. Also that I should not be embarrassed to wear Depends. Oh, by the way, she is a registered nurse. I put a copy of the article and other info from ICN in her in-box before I took a week of fto have a Cysto/overdistention done. The article was what did the trick and prompted her to better understand what IC really is all about.
After that, she was like a Pitt Bull defending its owner if anyone made the least little comment about me being gone or my frequent trips to the bathroom.

Deanna M

[mayray518]

good for you Deanna

[patweb]

Its very dishearting to hear that some of the ladies husbands are not understanding nor supportive. I am one of the blessed individuals to have a husbands that cares very much and is very supportive. Unfortunately now he is away in Iraq (Army) and can't be here for me and it upsets him a great deal so in our conversations and instant messenging i try to put on straight face even if i am having a flare so he won't be worried. He has been there for me even before I got the final diagnosis going to dr. appt. after dr. appt. always supporting what ever my decision was. He even took the liberty to look on this website to educate himself more. My heart goes out to all of those who does not have the support they so desperately needs. I will continue to pray for us all that a cure can be found. There are so many people that don't understand exactly what IC is and don't realize how it can change your way of living. :grouphug: :wink:

[neal1044]

I have a husband that says he understand and it's okay when I can't do some of things I did before, but tell him I don't feel like having sex because it hurts, you would think I just told him that I wrecked the car or something.