How many of us do?

[K9wife]

Just wondering how many of us ICers have actually talked to and explained IC as an disease, or even more importantly how many of our family/in-laws take a real interest? I am always amazed when I read a post from a spouse, or someone mentions a parent or grandparent that learns about IC. I guess it has just always been easier for me to just be the one who ran to the bathroom a lot, and I have never shared the degree of discomfort with family and friends. Anyone else feel the same? or should I change my ways? :hmm: Maybe the stressors from not "venting" actually worsen our symptoms...just wondering how everyone else here handles IC within their families, circle of friends, and co-workers.

[vm]

I sent out e-mail updates to close family and friends all through my diagnostic process. I also sent out e-mails with good information about what IC is and what it does to people. I wanted them to know and figured if they didn't want to know they could scroll on through the info. I've always told anyone and everyone about it, pretty much. Not job people b/c I was a total stay at home mom at the time.

Haven't had a negative response yet. I know some people have, but I have been fortunate not to have ever had that happen.

[K9wife]

Awesome!

[AnnieMac]

Hi
I've always been very open with my condition to my family and all my friends...I figure it's good for them to know, if they are going to be around me...(although I think they get a little tired of hearing about my diet...lol). My family has been very supportive along with my friends, even though I don't think they totally understand what I am feeling and going through...but they are there just the same...
I like the idea about sending e-mails out with updates...

[dancemomof2]

I have a page on our familiy site that explains my ordeal, that way when it is updated they read it also.

[Sarojini]

My whole family knows about the disease, and were kept in the loop during my search for a diagnosis -- mind you, some of them take a keener interest in it than others, and are more proactive about reading things about the disease, but they all know about it.

My employer also knows about it and they have educated themselves on the disease. The employee health department (who runs the drug testing stuff, etc) was particularly interested -- I was apparently the first person to disclose IC as a reason for having narcotics in my system (ie, "flunking" a drug test), believe it or not, and they spent 2 days researching the disease, speaking to my doctor and myself to ask about any restrictions or special allowances I should have, and exploring the ICN site and the ICA site. Then they called me back and suggested a few urologists in the area who deal with the disease! My immediate supervisor also researched it -- and when he recently broke his collarbone wiping out on his motorcycle, he wanted to compare pain meds ;) :biglaugh:

[Julie B]

Two levels to this..........my kids and husband know, of course, and I just talk matter of fact about it now and then and so their boy/girl friends know. When they all reviewed my book before it was printed, however, they all said at one point or another, oh wow, I didn't know that! Even my niece and her husband who helped me with it found IC fascinating and didn't realize all of the issues involved.

My parents and in-laws are all different about it. Funny, my mom never wanted to understand it, and since she thinks allergies and asthma are figments of people's imagination she likely thought this was also. My mother-in-law doesn't give a rip about anything like that in my life or my kids' lives for that matter.

My dad, on the other hand, was always concerned and would call and ask how the tests went. When he died, my mom told me he had worried about me a lot..........that he felt so bad I had this.

The one that is the most understanding, truely, is my father-in-law. He had bladder cancer a couple of years before my diagnosis. He had been transferred to another city temporarily so he didn't live with my mom-in-law at the time. He went through chemo and caustic bladder instillations for a year, pretty much alone. I would call him and check on him (I guess I was one of the only ones who did) and so I remember some of the pain he went through.........alone, God bless him.........and to this day, he will take me aside at family gatherings and ask me, gently, how I am, and encourage me...........he knows............(he is cured, by the way, and only has some minor IC like lingering side effects of the treatments...........so he really does understand)

[tbokay]

My mother does a lot of research online for me and we compare notes. She also will go to some doc appts with me so that I am getting the right information and not confusing things. She is also the one that spends time at the ER with me.

My sis thinks this is all related to being molested as a young teen and wants me to do homeopathic medicine - basically it's all in my head since the laporascopy didn't show endometriosis (which is good thing) and I continue to have problems but docs can't seem to find right treatment for me.

My dad ... well that's a whole other story/book - I don't talk to him often but he does know I have IC.

My grandma, aunts, and uncles will ask me how I am at family gatherings .. and I usually just say "fine" cuz I know they don't understand.

My friends ... they try to understand too.

My coworkers ... this is a sore spot. After my review it was "Strongly recommended" I go to EAP (employee assistance program) to deal with my "personal issues" and there it was recommended that I not discuss my illness or treatments. If I need to make doc appts do so after work. If it must be during work hours - tell only my supervisor that I have an appt - no other details. So I pretty much suffer in silence at work. If I don't feel good and it shows ... someone may ask how I am and I just respond "okay".

My primary doc (who is on maternity leave till end of Aug) has done research and genuinely seems concerned about my health. My first urologist - at first I thought he was nice, now I think he is an idiot!. My current uro/gyn whom I have only seen once seems to know his stuff. We will see if he is the same at my next appt on Aug 12th.

My cat, Bianca QT, seems to understand that when I hurt, she needs to lay on my bladder ... its her way of comforting me. She is a great listener - I just wish she would talk back sometimes and say "it's okay, Tara. this too will pass".

[Leslye]

Tara, I think that it is wonderful that your mom is very concerned with your IC. I am a little jealous, but glad for you. I am closer to my dad than I am to my mom which I am really not close to either one. I do talk to my mom maybe 1-2 every 2 weeks, she does ask me how I am & states that she really does not know ANYTHING about this disease. She did ask me though the last time we spoke about this web site & what the address is. I was Happy!!:) But my dad has NEVER asked me about my condition or to even try to explain it to him. But in their defense I am not around like I used to be either.
About the Dr's I NO where you are coming from my uro is an idiot too. I am currently just seeing my Primary for my problems & he is really good & seems to care alot & seems to be researching this disease. I gave him the address to this web site on Fri. & hopefully he will visit. But I am SO afraid that he will change too! They All want to Cure you at first then when they cant they Stop everything! Each appt I am afraid he is going to stop something or take me off of medicine that I NEED(that helps). My uro was doing everything that I needed & always there to talk to me until I did not like the Interstim Trial. Then he cut me off from everything meds & would not even return my Calls. Oh well, I did not really care for him as a person anyways ever since I worked with a nurse(back before I went to him, before IC) that he was having an affair with. It was kind of hard at times to take him seriously when I was trying not to picture what he liked to do in bed & his position of preference!LOL
You talk about Bianca alot(pretty name). We have 4 cats,3 indoor & 1 that was an inheritance (outdoor) The three indoors are our baby's & of course we Love Minnie the one outside. We have a Black shorthair female ,Inkye & a black longhair female,Jynxe & a white w/black & grey trim Male, Jasper Jax. Then there is Minnie a female tortiouse(sp) shell. They are the most Loving,caring & sweetest animals. They are my walking heating pads. I would not trade them for anything. They know when I feel BAD & they are always trying to make me feel better. Anyway wishing you the Best of Luck on your next appt. Aug 12th. Hopefully he will still know his stuff & be Very Caring too! Take Care, give Bianca a nice pet for me!:)

[Sherry5]

Wow, it is funny how our families are all different. My husband is great. My family are like a pack of wild dogs. If you show any weakness they will rip you to shreds. They know I have it, but I won't show them how much it affects me. They think any weakness is all in my head. Just like when I had to have a cyst the size of a chicken's egg removed from my ovary. All in my head. Surgery for endometriosis. All in my head. Adhesions on my uterus, all in my head. Bedrest with my last pregnancy, because my cervix shortening was all in my head. So now I just try not to show any weakness. They don't know when I am having problems. Three months after my diagnosis, I got pregnant and went into remission. Now the diet change they saw at first is gone. Now I am sure they think it has disappeared, and was therefore all n my head.

My in laws are very sympathetic and try to help all they can. Unfortunately, my family, the pack of vultures, live nearby and I deal with them on a daily basis. My husband's family is out of town. Well, we can't have it all, can we.

[Leslye]

Sherry, It is amazing how differ. our families are. I do not know if I could handle not being able to show my family how much I hurt. I do but NOT all the time, alot of the time I try to keep it inside. I hate feeling like I am whining all the time or complaining, so there are alot of times when my family ask me how I am & I just say about the same or just another day, thanks for asking. I lived with this disease for almost 10yrs or more without being diagnosed thinking that it was all in my head. Wow, I have had cysts also & I NO first hand that these are Extremely Painful, especially when they are leaking. I am having flash backs of when I had several rupture OUCH, I have never felt pain like that!! When I was diagnosed with IC my uro went out & talked to my family & explained to them that I have a very serious Painful & dibilitating(sp) disease,this was after my surgery. After my surgery Uro had put the DMSO in my bladder & I went into remission. Here I was feeling almost 100% better & my family was treating me like I was on death's door. But since then my IC & other problems have gotten worse 10 times. My husband & my kids are very supportive but I feel like I am letting them down because I cannot do the things that I used too. But anyway, I guess I will go for now. I Hope everyone is Having A nice peaceful Sunday!

[Sarojini]

Julie -- you know, my father-in-law had bladder cancer too a few years back, and he has been very understanding about IC. He researched the whole thing and always asks how it's going. My mother-in-law is always solicitous and concerned as well -- my own parents, well, they always seem sort of callous about the whole thing. Of course, my mother just doesn't express concern well... she was one of those moms who would yell at me when I got sick as a kid just because she didn't know how to handle her own worry (yep, I've explored this in therapy).

I really envy my hubby's relationship with his parents -- he's able to discuss ANYTHING with them, and my relationship with my parents is very perfunctory and nobody EVER says "I love you." Luckily, my mother-in-law has figured this out by watching everyone together and now calls ME alone sometimes, just to talk. She's made it clear she is THERE, and I can say anything during our chats, and she has encouraged me just to call her to chat too when I feel like it. And she says, "I love you" after EVERY time I talk to her.

As many times as I complain about hubby, he says "I love you" lots too. So I have a lot to be grateful for by marrying into this family....

[Leslye]

Jen, sounds like you are very Lucky to have really caring in-laws! My husband has a really Good relationship with his parents Also. His dad calls me at least 2 a week to find out how I am feeling & if he knows about me having a Dr's appt he Always calls to find out how it went. He is a wonderful man, I know where my husband gets it!

[callie0767]

despite living with this awful disease for over 20 years,most of my family still doesn't understand the effects of this disease. i have a few that are very supportive . my parents don't get it at all despite years of me giving them every piece of info found and even going to doc appts still doesn't totally get it.

[Sherry5]

Jen, our in-laws sound very similar. I too grew up without hearing,"I love you " much, and in my husband's family they say it all the time. It makes me feel awkward, but in a good way. I have ten brothers and sisters,(which is probably why my mother isn't very loving) and have never heard it from any of them. My husband's siblings tell me they love me every time I talk to them. Someday I will feel comfortable enough to say it back. ;)

Because I was raised without it, I struggle to tell my children often. It just doesn't come naturally to me. We are both blessed to have caring in laws.

[Kiyoka]

Beth, I don't tell my family anything. They are not supportive, and think it's all in my head. when i go home with lots of meds...they think i'm a drug addict.

[PenguinK]

I have always been the butt of all Bathroom jokes. Every rest stop always got a "gotta go, Kim"? from the other passengers, my husband says "don't you have to Pee?" when I'm pestering him and he's busy, even my son knew I'd have to go several times while we were out anywhere.
I think telling them that I found out the reason for this helped stop the teasing and I got a lot of compassion.
It's important to tell those close to you what you are going through so they can help you, or at the very least, not hinder your healing process.

Good luck,
KK