Help with Explaining IC to Loved Ones

[melissamia]

(Note from Kadi, ICN support volunteer: The ICN recommends books written by medical professionals, such as the IC Survival Guide by Robert Moldwin or Ending Female Pain by Isa Herrerra PT. The books mentioned in this posting represent one patients opinion and are not, that we are aware of, supported by any IC research studies.)

Hi friends,

I have been struggling with explaining IC to my family and friends, as I'm sure many of you are. My boyfriend, best friends, and even my parents and siblings do not understand the severity of this disease. I just had a conversation with my Mom about my Dad yelling at her, saying that I look anorexic/bulimic and I probably don't even have IC. (I am only 22 years old).

I am currently reading a book by Catherine ******, an IC patient, and she explained IC so well that I copied it and emailed it to all my loved ones. I hope it can help you explain things a bit better to yours as well. (If you haven't checked out any of her books yet, I highly recommend them!!!!)

[ICNDonna]

There's an excellent description of interstitial cystitis in the Patient Handbook on this site. You'll find the link to the handbook in my signature below.

I have deleted the portion of the above post which is copyrighted material.

Donna

[Julie B]

I wrote something awhile back about this. I call it an elevator speech, similar to what business people have to explain their jobs.

Here is the link:

http://www.ic-network.com/forum/show...462#post483462

[Daisy Mae]

It's so hard to explain IC! Just when you think you've gotten somewhere and they seem to have grasped the concept, they offer you a glass of cranberry juice and a coupon for a dollar off depends. Sigh....
In all seriousness, though, I'm a big proponent for awareness. I was shocked to learn how many people in the healthcare profession have never heard of IC. It is my goal to change that! I wish you the best in being able to communicate with your loved ones. Having their understanding and support is a huge weapon in your arsenal against IC.

[some_guy]

Perhaps you can find some medical websites that contain good descriptions of IC. Then also maybe find some IC stories where a patient describes it in a few paragraphs and maybe then gather some info on treatments, pain management, instills etc that people try. Maybe if you print this stuff out in nice clean easy to follow format you could ask some family members to read it then discuss it with them later.

I know times that I tried to explain it I found that the person did not get it or got everything confused to the point I almost wondered if I was on the same planet as them when I explained it. I find it hard to try to explain fast enough before their eyes glaze over

Of course reading to much could really confuse them or worse they read about some treatment and think they have solved it for you, now just go get this done and all better.

[Mothergoose]

My husband know i have IC and has seen many of the problems for me over the years, but i still feel he kinda blows it off as not being that big of a deal.

Last week i have my monthly check up and rx refill. He insisted to come with me, i ussally go alone so i can talk freely with my dr. So I cornered him in the office about not really believing it is as bad as it is etc, he of course denied what i said, but I asked the dr. to explain it to him he did listen, but I think still in denial mode. Then when it came time for the list of meds i needed filled, he perked up abit, when it came time for pain meds, he looks at me and says what do you take those for and how often do you take them, i calmly answered him and he ask the dr if this was true and the Dr. infatically told it it was all neccesary for me to have any quaility of life and it was not up for debate. I think this did a world of good, if this had come up at home he never would have believed me he would have belittle me and I would have ended up in tears, this way the Dr. handled it and it was done.

A few weeks before i finally found a compounding pharmacy to make valium sup, and when he asked what i ordered I told him, I tried to explain it did not go all over the body and make you loppy or anything but he did not believe me, I rearly use this anyways so it should not be a big deal , like maybe one day on month or if I have a bad enough infection I can't get out of bed. Anyways after explaining to him it us etc and answering all his questions i knew he still did not believe so I got the Dr. to tell him about that too and the Dr. told him nothing different than i did but he believed him.

My husband as you might have noticed is against most meds us. But when i was un medicated he was frustrated at me never wanting to go anywhere do anything or go to a resturant.

At somepoint you have to decided whare your priorities are. I want a life.

Althought i dreaded doing this it all worked out for the best.

MG

[Daisy Mae]

MotherGoose I'm so sorry you've had to work so hard to prove yourself. I have been there and I know how that feels. My first husband was very dismissive of my IC complaints and even when he did accompany me to doctor's visits or treatments he made it clear I was inconveniencing him and that I was surely overreacting.
I was basically forced to continue with all my expected "duties" not only at home but in making appearances with his family and the company he worked for, even at church, which he rarely attended himself. He was all about appearances. On top of that, he had affairs and let it be known that my inability to take care of him was the main reason. Once my eyes were open to what he was doing I felt very much validated. After our divorce many other things came to light and he is now a convicted felon after admitting to horrendous abuse that I can't describe in here. So much for his "appearances" now, huh?
I know your situation is much different than mine but I do know how it feels not to be taken seriously. I'm glad your husband was willing to go with you and that he believed the doctor. I hope he will continue to be supportive. Maybe a part of him is not as unsympathetic as it appears and he's really in denial because he doesn't want your condition to be something so bad. I'm not trying to make excuses for him, but just kinda making the point that people have different ways of coping with things that are difficult? Regardless, you deserve all the support you can get.
I'm remarried and my husband's very supportive. On a funnier note, I have nicknamed my bladder "Betsy." Her name is Betsy Bladder and I can refer to her in public without revealing anything personal to anyone around us.
If I'm somewhere with my husband and he asks me what's wrong I can say "oh, it was just a bad day, Betsy was mad about something and took it out on me." LOL Or sometimes I can look at him and say "We need to get going, hon, Betsy called and I promised her I'd call back." He knows that means "Get me the heck outta here, I gotta pee and I need to be at home to do it!" Hey, it works for us! By the way, Betsy is meaner than almost anyone I've ever known!

[Mothergoose]

Daisy Mae

Thank you for your reply you said

" Maybe a part of him is not as unsympathetic as it appears and he's really in denial because he doesn't want your condition to be something so bad. I'm not trying to make excuses for him, but just kinda making the point that people have different ways of coping with things that are difficult? Regardless, you deserve all the support you can get."

I do know that this is him in a nut shell, his mother was dying and him and his brothers were told probably not live the night which seh didn't but here they are all going on about they must be wrong etc. I do know it is just his way of coping. It is just hard to take some times.

Sorry you had such a rough first marriage on top of everything else.

Thank you MG

[CarolinaGal]

In my case, nothing my husband said really got the point across the way he wanted it to. There really isn't a "good" way to explain IC. The best thing I did was stop trying to relate and just understand. If that makes sense.

When you tell someone a story about the pain you're in we, as humans, automatically try to find a pain we've been in that we can relate to what you're feeling. With IC that's not possible. Unless you have IC you can't relate to the pain of an IC patient. I have absolutely no idea what my husband is feeling and I know that I probably never will. So instead of always trying to relate to his pain, I just understand that he's in pain (and a lot of it).

When I stopped trying to relate so much I began to better understand and it's done wonders for our relationship. :o)

[Daisy Mae]

CarolinaGal, it's not so important that you understand or how well you understand, it's that you even try in the first place that means so much! I'm very touched by your willingness to try so hard to relate! Just knowing that you care means a lot to him, I'm sure! My husband is very compassionate about this, and even though he knows he can't relate to the pain, he does try. When he had a kidney stone once, (he's also had diverticulitis flare ups before), he looked at me and said "I'm so sorry baby, I guess I just didn't get it." That meant more to me than anything he could have said.
Keep up the good work, your support is the best thing you could give him!

[KatieB]

I'm remarried and my husband's very supportive. On a funnier note, I have nicknamed my bladder "Betsy." Her name is Betsy Bladder and I can refer to her in public without revealing anything personal to anyone around us.
If I'm somewhere with my husband and he asks me what's wrong I can say "oh, it was just a bad day, Betsy was mad about something and took it out on me." LOL Or sometimes I can look at him and say "We need to get going, hon, Betsy called and I promised her I'd call back." He knows that means "Get me the heck outta here, I gotta pee and I need to be at home to do it!" Hey, it works for us! By the way, Betsy is meaner than almost anyone I've ever known!

This doesn't show that I cut a large portion of your original post out, I'm sorry I just don't know the in's and out's of posting yet.

Ok, I LOVE the fact that you've named your bladder!! That makes so much sense in a crazy funny way!! I've often wondered how to say " My bladder is killing me and I can't pee here!!"
Now I'm thinking up a name for mine! But with all the pain and trouble it's been causing me for the last month, the only names that come to mind are really bad names. Lol, not exactly the way to be indiscreet!!
I hope your doing well!!!

[mary124]

To me, (or at least in my circle of friends/family/co-workers) they really don't want to know what I have. All know that I am sick and that I might not eat what foods are served (will bring my own dishes for the most part--I do have a few co-workers who are caring enough to bring something when we have potlucks so that I can have a variety of something). My family, cooks what they want and most of what they cook I can eat, my Mom though if I don't eat something that she cooks she really gets upset with me --and says something like, "you ate this when you were younger- don't understand all of a sudden you don't like my cooking!"

[penneyjo]

I am very lucky to have a very supportive husband. I know he gets really tired of hearing about it and the times I get really low with it, but he is very kind. I don't think anybody "gets it" unless you have it. I was talking to my mother yesterday and she said at least I wasn't as bad as her friend who had to have a pacemaker. At least she can get the pacemaker and go on with her life! It's so frustrating.

It's bad when you are invited to a chili supper or something like that. You either don't go or have to go in to a long explanation about why you can't eat this or that. You can't go meet friends for coffee or drinks anymore. I take my own tea with me to restaurants, but don't feel comfortable to go to a coffee shop and do that.

[Daisy Mae]

pennyjo, I just wrote a very graphic extreme description under another thread that I use when people don't understand, especially for people who say "it could be worse." A pacemaker?? Give me a freaking break!! Those words were spoken by someone who truly doesn't understand IC and what it can do to you.
Please, see the other thread and feel free to use those words to anyone who says anything to you that proves they don't understand.
It's under "I hate this so much..." I believe. I'll be glad to copy and paste and msg it to you.
Hang in there, hon!

[ICNDonna]

Since some foods definitely cause a negative reaction (pain) for me, I simply say that I have allergies if pushed for a response of why I bypass a food being served.

Donna