Need advice on how to talk to family and friends.

[Cheryl529]

Hi everyone, I need some advice. I'm a new member to the message boards but a long time IC patient. I've tried two different paths. The first was not telling my friends and family what was going on. I didn't want to look like I was complaining. That bit me in the a** b/c no one knew what was going on and I'm sure it looked like I was just being distant. Secondly, I tried talking to them about it and letting them know when I was hurting or why I would always need to cancel our plans. It seems like a double edge sword. They get upset when I don't say anything and get upset if I do saying I complain too much and am being pesimistic. I'm sure it's hard since I don't "look sick". It's not as if I've withered away of have some noticable look to me now.

Can anyone offer advice? Has anyone seen any good articles that might be good for friend or family member to read? Thanks so much for your help!
-Cheryl :kiss: :grouphug:

[Katrina]

We all have difficulty talking to family and friends at some point.....I have sent links and printed parts of ICN and ICA for my family. I know we need to understand that it is hard on them too and impossible for them to fully understand.
This letter is taken from a website I already changed it to fit me it was origiginally about fibro but you can adjust it to fit you better....it can help people understand:


"letter to normals"

In the spirit of informing those who wish to understand ...



... These are the things that I would like you to
understand about me before you judge me...



Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.


Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing. (or basically with this mixture)


Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to EVERYTHING. That's what my diseases do to me.


Please understand that my diseases can be variable. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.


Please understand that "getting out and doing things" does not always make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to gain weight, eat more... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more."


Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever).

If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, it is going to be between me and my doctor because no one understands what the combination of things wrong with me does to me so we have to pick and choose how not to hurt me.
If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. It is a lot more likely you will have upset me and made my day worse and cause me more problems.

In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me the the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outside world...if you don't come to visit me then I might not get to see you...and, as much as it's possible, I need you to understand me.





http://www.ichelp.com/whatisic/AnIntroductionToIC.html this is the page of ICA I would recommend
I would explain that the pain of IC can be compared to the pain of cancer (you can say you know someone acka me, that has had pain symptoms that cancer pantients get from their pain...but I had from IC) if giving them my patient story helps go ahead.

I hope that helps you....you could also look for what other people said in this area of the message board.

:grouphug::grouphug::grouphug::grouphug:

[kadi]

I've had very similar conversations with family myself and my relationship with my parents and other relatives has definitely been changed by IC. So please forgive me if I get long-winded on this one.

The Interstitial Cystitis Association website has a Self Magazine article you can print that shows how devastating IC can be.
www.ichelp.org

I recommend "The Chronic Illness Experience" by Cheri Register for you to read. This book shows how chronic illness is different from a temporary health crisis, and covers etiquette, family,work,marriage, parenthood, doctor/patient relationships.

I think there is a "fraternity" of illness, that no one else can understand. I've been comforted and challenged most this year by friends who've "been there"with their own health problems. They get it like no one else does, not even people I've known for years, not even my family. And I'll listen to them because I figure they are the only ones who have the right to tell me to shut up, quit crying and suck it up. And they never have said that.

I would encourage you (and I'm talking to myself too here) to put your energy toward healing and not to struggle to make family "get it". I've had so many sad and angry conversations with family this year and none of those conversations created any "breakthrough". Over this past year, they've come to support my diet and accept my cancelling on bad days. This is major progress.

I think that all we can do is accept what our families can give us and go elsewhere for what they cannot. I've relied on the "serenity prayer" a lot this year and that helps...

Wishing you better days soon...

[Cheryl529]

Katrina, Kadi,

Thanks so much for the great advice, links and suggested reading. I plan to check it all out. Thanks for taking time to help me with this. I really appreciate it! :lmao: :angel: :woohoo:

[sms]

Cheryl, I came here today feeling exactly the way you do. I am so frustrated by this illness and my lack of knowing how to communicate to friends, family and doctors just how I feel and what I'm going through.

Katrina and Kadi have some good advice. I think I will try Kadi's approach and put my energy into praying and asking God to intervene, and help with the healing and with helping friends and family to understand. :dogrun:

[Cheryl529]

I agree SMS. Goodluck. (((hugs)))-Cheryl