I have IC, its not contagious!

[ophelia33]

Hi, I didn't know where to put this but I'm having a hard time w/ other people. I had a friend I talked to online and she did not have IC nor did she know I had IC. We were talking about pain in general and I mentioned I had IC and I have pain everyday sometimes better sometimes worse. As soon as I said I had Interstitial Cystitis she never wrote again. Coincidence? Seems odd. Sometimes I feel like a lepper saying I have IC. I don't even bring it up that I have an illness unless I'm comfortable b/c quite frankly IC is embarrassing to me. Sometimes I feel like I have to say "its not contagious" or "you can't catch it through the computer!".

Anyone else experience what I call the 'IC/lepper syndrome'?

feeling less than adequate at the moment. hugs,
Ophelia:hi:

P.S. My best friend emailed me today and asked how I was. She knows I have bad depression and I told her today I had IC. I've kept it from her for 2 years. Now I wonder if she'll even email me back.

[ophelia33]

Hi, I just thought I'd update this since I heard back from my best friend. She did hear of IC. I told her I was struggling w/ accepting the IC diet and she said that I must look anorexic by now b/c it seems I can't eat anything and that she was envious of me. Envious?! She also said the diet probably wasn't a big adjustment since I'm used to eating bland food anyways. Not a big adjustment?! She also said she would be in such a "tizzy" if she couldn't have alcohol...

Boy, unless someone has IC, they just don't understand...she's never even had a UTI...this post does belong in depression b/c that is about how I feel at the moment.

hugs,
Ophelia:mad:

[kadi]

For me, when I was first diagnosed, there was a sifting out process that occurred with my friendships. Some didn't make it and I had several very painful confrontations with friends who were upset I wasn't fun anymore.

At the same time I developed IC, my grandmother died of cancer, my brother was deployed to Iraq, my sister in law had a high risk pregnancy, my uncle had prostate cancer, and drug dealers moved into the apartment right below mine which made my home dangerous and I had to break my lease & move. At dinner the night before my grandmother's funeral, one of my coworker friends complained in front of 2 other coworkers that I was a "downer" and she didn't enjoy spending time with me anymore. I pretty much told her what she could do with her "perfect little life" and walked out.
The friendship was damaged beyond repair with her and one of the two other women at that dinner. She has since apologized for "not being able to support me as I needed at the time", but neither one of us would be interested in resuming the friendship.

Another friend told me that I was making too big a deal about my medical problems and that I'd be "just fine". This was when I had had weeks of voiding 60x a day & was trying to sleep on the toilet because I couldn't sleep more than 20 minutes at a time in bed. I was losing a pound a day because my pain level was so high, I was constantly nauseated. I think my answer to her comment involved the "F" word, which she was so offended at, that we had one more argument & never spoke again.

I think what I'm trying to tell you is that some people show their true colors when things are hard. I was devastated when these things happened to my friendships, but 6 months later when I asked myself if I still missed them, the answer was no. There had been signs along the way that the friendships were shallow & that those people had fabulous images, but were missing qualities that matter to me in friendships.

I am truly grateful for the support I received here when no one else understood. And for the friends who stayed true to me during the very worst time of my life. Little things mattered, like the friend who ordered the exact same meal as me in the restaurant because she didn't want me to feel alone with my new & self conscious diet. She also drove all the way to Stanford with me the weekend before my first appt there so I would know how to get there on the day of the appt & to help me be positive and hopeful. Another friend took the day off work to go to my grandmother's funeral & to take me to dinner afterwards. Other friends & my family helped me move.

Even some of my students were angels without realizing fully what was going on. One kid showed up many mornings during my prep period to ask a question or two, but eventually he told me he was checking on me because he knew I was sick. I found out later his mom had a brain tumor and his brother was autistic. This giant, tough looking young man has the gentlest heart!

How did I deal with the rejections? I grieved the losses, wrote about them in my journal & here on the boards, talked them out in counseling with a medical social worker. And then I kept a gratitude journal & every night wrote down any kind thing someone did for me, no matter how small. That helped me re-balance.

I also made a point of doing something nice for other people, even if it was just sending a thank you card or writing down one of their important events on my calendar & calling them that day. IC made me feel very self-absorbed and isolated and I didn't want to be like that.

It took a while to feel okay about my relationships again. This all didn't happen overnight. But things got better. I hope you will keep an open heart & find friendships that will support you in good times & bad.

[kadi]

Hi Ophelia,
Your update came through while I was writing you a book!

It sounds like she doesn't "get it" at all. The friendship may not be lost however; it took some of my friends a while to see for themselves the impact of IC on my life.

Explaining it isn't the same as having them see it over time. I hope that with time she will grow to understand.

Sending a hug,

[waterflow]

Hate to say it but I've been through this many many times with everyone. She isn't a true blue friend. She will never understand it no mater how hard you try. To save yourself a lot of heartache (and you will have it) drop her (before she drops you), keep on walking and don't look back. I've had people say they could catch IC too. Think we have all walked in the same shoes at some point. Doesn't make it easy but at least we are not alone.

[OrlandoP]

If a friend can't stand by you during illness, I'd seriously question what kind of friendship that is/was. Kadi says it best, and has the best coping plan.

Every one of us goes through heartache. For some of us, it's a lifelong illness. For others, it's cancer, death in the family, abuse, lost jobs and marriages, and a host of other things. No one escapes from needing love and support.

Some folks are just kind of unable to see this. When my grandmother died recently, I was pretty alarmed at how callous and "whatever" some of my friends were. IC isn't the only litmus test for true friendship!

[nottoc4]

It's such a pity when we can't live up to their expectations of us.
This is a really painful disease and our quality of life is in the poop shoot until we find the combination of things that helps us. Frineds and family we lose along the way were shallow to begins with. Most people do not understand when we try to explain it to them. Thank good ness for this support site and the people that run it.

[ophelia33]

Hi, I want to thank everyone who has replied thus far. I was nodding "yes" through everything written as I understood complete what was being said. I'm sure this is a topic everyone can relate to.

Honestly, my "friend" is and always was shallow. I feel mean saying that, but its true. She pokes fun at our overweight friends and she calls my mom anorexic b/c she's very thin. I did put a stop to the name calling around me. I can envision her talking about me too. Telling everyone I pee all the time. I guess the point is, she wasn't a good friend before and as much as I thought she would understand now...she just can't, doesn't or won't allow herself to.

I suppose I have to stop trying to make her be the friend I want her to be and accept her as is. The only thing is, I don't want friends like that. Maybe I was afraid all this time that it would come to this and well, maybe its for the best.

Thanks Kadi for sharing all you did. I can tell it was from the heart and I'm sorry you had to deal w/ what you did. No, my 'friend' didn't 'get it' at all.

Waterflow,
You are right, we are not alone and sadly, I've begun to hear from others who have suffered the same 'contagious' fear. Someone else I know w/ IC has to follow w/ "its not contagious" so people won't scatter. That is sad.

OrlandoP,
So true...that same friend of mine rarely called during my 2-year divorce battle, I guess that should have clued me in...:bonk:

Sometimes its best to move on. I've found many people here more comforting than most people I know personally. Most people just are fair-weather people. The ones who aren't I'm glad to know.

hugs hugs and hugs,
Ophelia:hi:

[LithEruiel]

Thank you so much for your post Kadi. It really helps me to read other people's stories to put things in perspective.

I've been feeling rejected a lot lately because of the people in my classes. I took classes at a community college this summer to get my prerequisites for nursing school done. Most, if not all, the people in my classes were women (ages anywhere from teens to 40's) with kids and all they talked about was their kids and pregnancies and stuff like that. I took five classes and no joke, in each one there was only one or two other people who had no children and in one of my classes I was the only one without children. In the class where I was the only one without kids the teacher actually picked on me about it and told me how pregnancy isn't so bad! I finally said in front of the whole class that I have a disease that could become intolerable if I was pregnant (without mentioning IC by name). I already go to the bathroom a million times a day do I really need to be pregnant too? I know some people's IC goes into remission during pregnancy but it's not a roll of the dice I want to risk. Besides a million other reasons it would be unwise for me to have children right now like being in school, having no money, no insurance, being in a relatively new relationship, other health problems... it was just like geez lay off...many people can't or choose not to have children and it was none of her business.

[Mrs. Peel]

Just wait 'til IC gets on Oprah and becomes a fashionable illness. It's insane, but it's the way the media affects our country.

Pardon the sociopolitical rant.

[LithEruiel]

Alright, I can't wait lol :woohoo:

I actually do wish there was more out there about IC. I never heard of it until I started having symptoms and my aunt said her friend had IC and it might be what I have. I was blown off my several doctors before I was diagnosed. I wonder if they even knew what IC is.

[laurenK]

First- thank you everyone for sharing their experiences-just reading all these posts helps so much when I am down and feeling the same way. I was only formally diagnosed with IC a month ago, and I have been trying to adjust to diet, meds, and lifestyle changes in general.

I really feel like it affects my ability to be social. I'm a lawyer by trade- and I am used to networking and tons of social gatherings- where alcohol and eating out is very common. For me, I tell some people I am closer to that I have a sensitive bladder kind of like a stomach ulcer so I cant eat certain things or drink alch (which seems to work). But for others I just try to pretend like nothing is wrong or that I am just not in the mood for a drink. I've had reactions where I order (and have to ask the waitress to hold like 1/2 of the ingredients) say that I am such a picky eater and high maintenance, or other people think I'm pregnant and that is the real reason I am not drinking. It never ends. I just haven’t found a way to feel comfortable going out- I am overly conscious about ordering off a menu, and there have even been a few places where I cant find anything to eat- so I dont. Then people really think something is wrong with me- and I get badgered with questions. This past month has made me more reclusive than ever.

On top of all this, it has been hard for my significant other to adjust to my changes. I used to make homemade meals every night for dinner, so we always ate well. Since this diet- I can barely force myself to eat- all the ok food is just so unappealing to me because there is no variety, so I dont cook much. We also used to enjoy a bottle of wine on the weekends and just sit outside and relax. Now he can drink, and I can't, and it is weird for both of us. We used to go out to eat at least once on the weekends, now we dont do that, because I have such a difficult time ordering. We had a long talk this weekend and we decided when I start feeling better, we'll have to learn to enjoy new things- like hiking, fishing, and other outdoor activities, where food/alch arent the main event. I'm really happy he is being proactive! I wish all people were like this.

I can definitely relate to everyone, and I get down too, and I truly appreciate this forum and all the wonderful support we get here!

Thanks,

Lauren

[babygirlh1]

Social Issues :cussing: Like we don't have enough to manager during our day. I don't know if this will help anyone, but I simply tell people I have food allergies and the list is too long to talk about. That shuts everyone up. Not only that, I am always surprised by how many people tell me what they can't eat due to some food issue they have. As for alcohol, I just tell people I don't drink. That shuts them up because they don't know if they should pursue in case I am a recovering alcoholic or if I have some religious preference to not drink. There have been work functions with food where I did not eat and the small minded ingnorant people made comments to my coworkers that I did not eat. Big Woop! I don't look anorexic, trust me. Why do they care if I eat or not? These truly are the busy bodies of the company. But, in the end we each need to do what is best for us. If that means avoiding some social situations that is fine, but I encourage everyone to be creative. I often will pop in during a cook out and tell friends I can't stay to eat because I have other plans for dinner. No one ever minds, they seem to appreciate I came anyways. Sometimes I have brought my own meal, I'm a vegetarian and I don't expect anyone to provide me with a special accomidation. The other day I read something about not drinking because of the calories. It mentioned ordering a tonic and lime since it looked like an alcoholic drink but had no calories. Maybe someone on this website has some creative non alcoholic drinks besides water that we me be able to order out that will confuse the simple minded. Ha Ha