IN LAWS --- need advice on helping them UNDERSTAND

[panzarella]

I was recently diagnosed with IC after having a flare up that lasted about 8 weeks. I was in so much pain that I was in bed for almost the whole time and have not gone to work. My husband, my family, some wonderful friends and co-workers have been my main support system.

During the past 8 weeks, my mother-in-law has called at least once a week (sometimes twice) to see how I am. She even drove me to the doctor once since I was on so much Percocet I could not drive. Prior to getting diagnosed with IC, she made us meals twice since she knew I was not up to cooking. I did receive a get well card from her and my father-in-law.

My in-laws live less than a mile from me and they have not come to visit me once. She always talks about how important family is but has not taken 20 minutes out of her day to visit. In the past 8 weeks, she has gone out with friends for dinner, gone to weddings and had several visits with her grandkids.

On Friday, I was officially diagnosed and also had surgery on my bladder to burn out some lumps found. On Saturday, my in-laws asked us to pick up some sandwiches and come visit them at their house since the grandkids were over. My husband and I were VERY UPSET, first I cannot eat lunch meat which we had explained in the past and second, I was in too much pain to leave. We invited them over on Sunday but they were too busy yo come. Tomorrow is Tuesday and I have not received a call or visit yet.

I know I sound like I am playing the poor me card but I just have been very depressed about everything I have gone through and feel as if my husbands family does not get it or truly care. My husband has also expressed that he is upset that his family has shown interested as if I have a "cold" and not not IC.

It is 1:30 am and I cannot sleep because of the pain and because I am so upset that I do not know what to do. I am a very honest person and if I confront her on it, I do not know how she will take it. I am expecting that she will make excuses. I have thought about just ignoring them since I am so hurt but I know that will be hard to do. My husband and I needed them --- but they were not there.

The tears keep rolling down my face.

Any advice??!?! PLEASE HELP!

[Sunflower23]

I'm sorry to hear that. And I'm so sorry to hear you have IC. That's tough to learn about when you first get it.

When I was first diagnosed with IC, my family had a similar reaction. As if they expected me to just get better next week. I kept telling them how serious it was, but they didn't really get it at first, not until the first time they saw me cry during a flare up. It really really hurt to have them just shrug it off, and sometimes I still don't really feel comfortable talking to them about it because they still don't really understand. However, I did come to realize that even though they don't understand, it's not that they don't care.

Some people just aren't good at handling other people's pain. (In the same way that some people can't handle confrontation and some people can't handle stress.) A part of them wants to believe that you're fine, because they're afraid to recognize such a crappy side of life. And a part of them doesn't take it seriously because they haven't come face to face with it yet.

It's probably not that your in-laws don't care, it's that they don't get it yet, maybe because they haven't experienced serious pain themselves, or maybe because they haven't really seen how serious your pain is. (There is a huge difference between hearing about someone's pain, and seeing them in pain.) I think in time, they will slowly realize that this is a much bigger deal than they thought. Especially if you keep telling them about it.

Definately, there is NOTHING wrong with playing the poor me card! Poor you! You're going through a tough thing. Feel free to be real about it if you want to because that's what will help people to really grasp what you're going through.

I find if someone is marginalizing the situation, that it helps me to talk to the people around me who do understand it. Some people may never really grasp what a big deal IC is, but it sounds like you have a lot of wonderful people around you who do understand and care a very great deal about you. I suggest to just focus on them and ignore your in-laws for now. Eventually your in-laws will get it...even if they're being naive about it in the meantime. Don't let them stress you out. Just do what you need to do for yourself right now. You deserve to relax, figure things out, and turn down your in-laws' invitations if you need to. Don't worry what they think...just brush it off.

If you confront your mother in law, and she does make excuses, just chalk it up to immaturity and let it go. No need to stress about it...Lord knows you have enough to stress about! And feel free to keep being honest with her. Eventually something you tell her will have to start sinking in.

I find it helps to tell people stuff like this when they're being dense: when I was in labor with my daughter, (the really crappy, push-the-baby-out part of labor) I made a mental note to compare the labor pain to some of my worse IC flare-ups. They were about the same: on a scale of 1-10, the pain of labor was about a 12 and the pain of IC was about 11.5. It actually didn't feel like a big deal to me to be in labor! It felt like that much pain was normal. I think people start to take it a little more seriously when they hear something like that. I know a lot of people with IC have made similar comparisons to labor pain.

Also, just to encourage you, even if it takes quite while, you will eventually figure out ways to cope with and reduce the pain that work well for you. (Although it took 4 years to gradually get here, nowadays for me on a scale of 1-10, the pain is usually somewhere between 0 and 2.) I know it really helped me to hear other ICers say that when I was first diagnosed with IC.

I'm so sorry that you got this. This may not feel like much of a consolation right now, but on the "bright" side, IC definately makes us stronger people. And it makes us much more understanding about other people's pain ourselves. I'll definately be thinking about you and hoping you feel better soon.

[ICNDonna]

One thing you might do is to print out some parts of the Patient Handbook and give them to her, telling her that you know how much she cares and that you aren't very good at explaining. I suspect that she thinks you're probably going to be fine in a few days --- it's how a lot of people react.

:(
Donna

[Mothergoose]

I tolally agree with Donna for sure print them the diet out, leave your diet paoted on your fridge, it showes you are seriuos about following all the time not just when you are wtih them to inconvience them.

And yes many people try to denie things it is just in their nature, my mother in law admitted to me that for years she thought I was just being difficult, I have alot of food allergies, and she was not as careful preparing my food as she should have been and I had a bad reaction, after she saw it and knew she had done it to me she was much better about it.

This whole IC thing is new to you and it takes time for people who have it to get a handle on it, so I am sure you can realize someone who dosen't even know about it, will take longer to to get it.

There is no excuss for not even visting, but maybe she thinks your sick, you would be resting and not wanting to bother you, or maybe she thought you had something she could catch before your diagnoses.

I send my mother and my sister youtube videos of Jills to watch, it is really only them that I care weather they get it or not. When doing things with my husbands family I tend to bring something I can eat if need be.

Things will get better you were just diagnosed, it take time to get this all figured out.

Take care MG

[mary124]

I am sorry you have IC- My Mom is the same way even after 20 some years of having IC. I have tried to explain, printed out a list but it doesn't do any good! My Dad is just great always asking how I'm doing. (I talk to them on the phone at least once a week (usually Sundays-mostly my Dad as Mom is in Church). When we go down to visit them or they come up to see us, Mom will cook and then when we keep telling her I can't have that she gets upset and says somthing like "all of a sudden you don't like my cooking!" I have just learn to ignore her for the most part when it comes to eating (sorry Mom!). I usually tell her to cook her usual stuff and i will pick out what i can and can't eat. At work here, a lot of people know that I have either IC or some known illness where I can't eat some foods that they serve during luncheons so they always go out of the way to cook something for me (even when we go out for lunch - they ask can I eat at this place?)

[Snowden1]

There was lots of good advice here. I must say I am in kinda the same situation. Although both my husband's parents died years ago - my family does not understand. My dad and step mother keep saying, "well we hope you get over this soon." They do not understand how foods could have such and impact on one's bladder. I have sent them articles on IC and what it is, but somehow they still don't get this is a long term illness that you don't pop out of overnight.

I guess my main source of sorrow comes from the fact that they will send me cards (they live 3 hours away and haven't visited at all since I developed IC) saying how "great" life is going for them. It makes me sad that they don't care about how much pain I'm in. My sister told them I had lost about 35 pounds since I saw them last and my dad said, "I don't think she's lost that much, we just saw her last year."

Sometimes relatives and friends just don't understand the amount of pain/frequency and urgency you have. They think in terms of short term illness - you get it you get over it. I know they love me in their way and I try to focus on the people who do get it. My mom has really come around to understand IC. She gets on the IC network and looks up recipes and tries to make them. One day she tried 5 different ways to make a pancake for me without gluten (I'm intollerant). I had a huge flare - don't know what she put in them, but God bless her for trying.

This illness also lets you know who your true friends are and who will stick by you in good times and bad.
Teresa

[panzarella]

All of your responses have made me cry. After reading all your experiences I feel like their are people out there that understand what I am going through. I guess I had this image that everyone else with IC had 100% support from all their friends and family.

I am still very sad and confused but comforted by knowing I am not alone. I wish I could give each of you a hug right now for taking the time to share your experiences with me.

THANK YOU! THANK YOU! THANK YOU!

[kadi]

Hi Panzarella,
The first year with IC was awful. My doctor told my relative who drove me to the cysto/hydro that I might have IC or I might be fine in a few months, that it might just be a "transient irritation". Guess which one the family focused on? And boy were they mad at me when it wasn't transient.... It didn't help that my grandmother was diagnosed with terminal cancer that same week. Or that my brother was deployed to Iraq right after that? Or that my sister in law had a high risk pregnancy. The only one who was consistently supportive of me that year was my dad, and even his patience flagged as the other relatives complained and complained about me, and I became more & more aggressive in trying to get them to understand and also more & more desperate as I had trouble finding treatments that would work.

Honestly, the only thing that saved my relationship with my family was that another relative developed bladder symptoms a year & a half after me, with similar circumstances (I'd quit my bc pill & that likely triggered the IC, my relative quit her HRT & developed bladder pain). And it turned out that my grandmother may have had IC flares as well. (Not that she bothered to tell me or anyone else when I got sick! Mentioned it later, but insisted it didn't matter because it went away).

Because it looks to be hereditary now & my other relative found a lot of relief from the IC diet, my family has now become very supportive. I am very grateful for that.

My friends? Well, I lost a few in the beginning. But, one of the (very few) gifts of this illness is that I now have a whole new quality of friends. The friends that stayed or came into my life with IC are very understanding, generous people....

And I don't waste much time anymore on people who don't get it. Just this week, I mentioned it to a new coworker. I happened to see her literally running down the hall after a bathroom break & mentioned that we could help each other with restroom breaks & said I have an illness that sometimes makes me need to use the restroom more frequently than most people. She asked what it was, I said "interstitial cystitis". She turned, looked at me in surprise & said, "Oh, I understand. I had it as a child. It was really annoying. But now I've learned that it's all mental and I'm fine." Yikes. I decided that conversation needed to be over soon. I told her nicely I was happy it had worked out that way for her, that I wished it were like that for me, & excused myself politely. I think I managed to do it well enough she didn't know how appalled I was.

You are definitely not alone. I hope that in time your mother in law becomes more helpful & kind. And know that you can come here as much as you need for support & experience. :kissing:

Sending a hug & wishes for better days soon,

[Mothergoose]

A little off topic but about how ununderastanding people can be. My father inlaw is old and I take him to his Doc app and write stuff down for him to keep all the info straight, he was to g on iron sup. I said i was concerned becasue of the constipation issue, the Dr. saod for him to do all the ussall things for it including drinking lots, I said you will need to talk to him about that, that he dosen't drink enough. I gave him the example that my father inlaw and I had just got back from a 3 day trip, when we left on the trip he brought 2 bottles of water to drink I brought 15, when we came home he still had 2- 1/2 bottles of water I had drank all of mine, now he didn't really only drink 1 bottle of water in 3 days because he drank coffee with meals, and he had a 1/4 of a bottle of pop, now in my mind this is not enough fluids for anyone, I realize I drink alot of water, I only drink water and skim milk. I was just trying to make a point about that the man does not drink enough fluids. This Dr. (who is fairly new to our town) turn to me and said well not everyone likes to need to urinate that often. I let it go it was not my app, i just made mental note not to go to him for IC problems. Well as luck would have it the next week i got an ear infection and he was the only Dr. I could get in to see. So I decided to tell him that I had IC and severe urinary retention and that drinkning lots of water helps me with my symptoms even if it does mean running to the restroom all the time. His response to me was how do we get rid of IC what med do you need to get rid of this. i was floored he had never even herd of IC. I explained in a short version that you don't get rid of it, and that if he was going to stay in our town, (we only have a few Dr. here so sometimes you have no choice of who you see) he may want to read up on IC. I still won't go to him unless I really have to.

My friend who has a full time cath went in to see him for a UTI which she gets frequently her Dr. was away, she said she was sure she had a UTI and wanted AB's, he said no her dip was clear, and she had taken Ab's recently, she would have to wait to get the culture back she said by then I will need to be in the hospital, he still refused, the next day seh went to see a locome that was herer he also refused to give her Ab's, and just as she kewn she was in the hospital a few days later with a raging infection, she was ****** to say the least. When her regular Dr. got back from holidays she went in and explained waht had ahppened, he appoilgized and said that he would have it put in the front of her file to give her AB's when she feels a UTI coming on.

You just don't expect the medical people to be so uneducated.

Hope all are having a good day MG

[Snowden1]

Yes, Mothergoose you are right. I have gone into both family docs in the same medical practice here. The first one knew nothing about IC. She said, "You can get rid of cystitis it is not a life long infection. You take antibiotics." I said, "No, I have interstitial cystitis - she said, "Yes, cystitis." I gave up.

The other doctor I went to I ask, "Have you heard of IC ?- she said, "Yes, I have heard of it because we had a girl who worked here who had it." Then she said, "Can't you take ---- for that (not sure of the drug she mentioned)?" I said, "You mean Elmiron? She said, "Oh yeah, that's the one. I said, "It doesn't work for everyone." She said, "Yeah, the girl that worked here went up to U of M to get help." I thought, "The girl worked in a doctor's offices where none of the doctors (there are 8 in the practice) had a clue about IC.
I am scared to let them touch me in there - I am looking for a more informed family doc. I have called around, but they are either not taking more patients or don't take my insurance. Still looking.
Teresa

[VickiB]

I know I sound like I am playing the poor me card but I just have been very depressed about everything I have gone through and feel as if my husbands family does not get it or truly care. My husband has also expressed that he is upset that his family has shown interested as if I have a "cold" and not not IC.
If you are playing the 'poor me card' it's only because you've been dealt it. Unfortunately, IC isn't like draw poker and we don't get to throw away the cards we don't like!

I have family members who don't get it, don't want to get it, and aren't ever going to get it. It's just their nature. I think there are all kinds of different reasons behind the reaction you're received from your hubby's family. Self-absorbed, fear, ignorance, oblivious distraction, etc. Probably the best you can do is what Donna suggested, make some material on IC available to your MIL. Who knows, perhaps she'll come around.

Vicki

[suncaro23]

Panzarella,
I so understand what you are going through. I have been diagnosed for 15 years, and have had a recent bad flare up where I was getting no sleep at night. I told my mother about it and she said, just take an over the counter sleep aid. I told her I couldn't because it made my IC symptoms worse, and she actually asked, "What is IC?" Also, I told my dad I was having a flare up and was really suffering, and I didn't hear from him for nearly 4 weeks after that. They choose not to get it, and it definitely hurts.
The best thing to do I guess is rely on the people who will be there for you in the long run, and to come onto this forum where everyone understands!!
I hope your in laws do come around for you at some point though.
Dawn