When Others Bug You - Part Two

[icnmgrjill]

I started the very first bladder support groups on the web back in 1993 and have the distinction of being the veteran and most experienced IC support group leader on the web. Thus, I'm going to use a little well earned experience here to talk about how to survive on these, and any, messageboards.

I've seen great successes and spectacular flameouts. The successes are patients who find, finally, acceptance, a home and a place where they can break their isolation with IC. 98% of the people who visit this website, and others, have the best of intentions and work darn hard to be kind, gentle, supportive and nurturing. They are the superstars of the IC movement... the ones who, each day, patiently answer questions and never ask "but what about me."

Yet, there are a small percentage of people who don't have the same intention. They may have other pathologies, such as drug addiction, personality disorders or a desperate need for attention. I learned, my first year, that there were people who kept posting that they needed advice... and we would spend hours and hours trying to help... only to realize that the patient never tried anything that was suggested. They were just desperate to be the center of attention or to receive any attention... which was really sad statement about their lives.

There was another patient who, if you met her in person, you'd just love her... but she was a really mean writer. She didn't see or believe that her words were painful. I had to eventually ask her to leave. Her strength was face to face communication. Her weakness was in not seeing how hard her words were. She was basically a poison pen... and not at all supportive.

Still another patient was just so angry about her life that she'd fight about anything. It didn't matter what the topic was... she picked fights. She was just very angry... and, you know, people are entitled to their emotions but they are not entitled to use them to disrupt the support for others. The needs of the many far outweigh the needs of the one.

In the past ten years, we've had just a few patients make multiple identities and think they are really clever... especially when they try to create conflict between others. It's kind of like a cyber multiple personality disorder. It's really creepy when their accounts talk to each other and have discussions. We have one user right now who has several identities which I've disabled as of today.

I'm going to share the most painful example that we have of two patients who didn't get along. One night they began bickering about whether IC patients could successfully ride horses without irritating their bladder. What started out as a simple difference of opinion became a mean spirited personal attack. The tragedy was that one of the girls was killed in a car accident just days later... and the other had the audacity to ask "but what about me." How selfish was that?? Shameful.

You have to learn how to walk away from disagreements before they get out of hand or you get to emotionally caught up in the discussion. If that horse discussion had stopped after the first minute, that family would not have told me after the funeral about how sad their daughter was the days before she passed away. That broke my heart even though it was no fault of mine or the ICN's. This is one of the hardest lessons we each have to learn in web communities and when fighting IC flares... try to stop them early.

For me personally, there was a time when I let other people on the web really upset me and cried buckets of tears trying to please everyone... and I came to realize that I had to have better personal defenses. I couldn't please everyone... and damn near broke myself trying.

The reality is that you will never meet most of the people on these boards and if they don't like you... or you don't like them... it doesn't matter. 100 years from now, noone will remember what happens here. You are not part of each others lives and their words are just words... they say nothing about you, or me. They say everything about that person and their abilities or lack thereof.

Walk away from someone who bothers or upsets you. If anyone sends you a post that upsets you or a private message, place them on the IGNORE list immediately... even if they are so sick that you want to take pity on them. You have to have boundaries... and you have to help them learn their boundaries.

A cyber friend is, by their very nature, a distant friend. They are not family. They cannot take you to the ER when you need help. They cannot replace what you should have in your life... which is a good, in-person support system. You have to have a balanced life... and much more emphasis should be placed on the people that can hug you and help you ... and be there for you physically... than on a cyber friend that can lift your spirits... but sure can't accompany you to a doctors appointment. Keep it in perspective!

That said, I'm sure there are some people reading this thinking... gods... is she writing about me? I'm thinking really about those early hard lessons from a decade ago. But, maybe you can see a part of yourself in this. Are you always angry and fighting with people?? It's not fair that you take it out on other IC patients... you need a better anger management program. Go find a class and do it. Do you get upset when people don't respond to your posts or say something that you take the wrong way?? ?? You're taking it too personally and are forgetting that more than a thousand patients post each day. There will be days when others need to come first. Let them!

The ICN is about support and education. We cannot control how you relate to each other but what we can ask is that you act decently to each other, that you act kindly to each other and that you bring any concerns you have to us immediately so that we can try to resolve them.

I'm going to be blunt here because this happens so regularly that it become an annual routine. If you let someone upset you so much that decide you need to leave the ICN or any support group, you are giving that person way to much power over you. Put their words into a better perspective. Yes, it's great to take breaks. It's fine to move on... but don't let anyone drive you away. This is your support group... and the only one who can really ask you to leave is me.... and I only do that rarely and with very good reason.

I'm going to end this with a bit of a rant. It makes me frustrated when people blame the ICN for personal disputes between two people. Honestly, Donna and I can't prevent that... but it's really not fair for anyone to post about their disputes to the point that it makes us all look bad and drives newbies away. That's not our goal. I don't want to see anymore posts that blame the ICN for stuff out of our control like personal disputes. If you have a beef with me, call me. Give me the dignity and opportunity to try to resolve the situation before casting aspersions on this entire community. We've all worked too hard to see our work tarnished in this way.

This is a support board that I own. This is not about your free speech. If you're mean... you will be asked to leave. If you create multiple identities to cause problems, you will be asked to leave. But, if you're kind, supportive and encouraging, we will treasure you as much as we can. What a wonderful legacy that would be... to be remembered as someone who stepped away from their own problems to help another in need.

Jill

[tkdrew]

That was wonderful. I have no clue what has gone on here, and honestly, don't want to know. I agree with everything you said. The one rule that people seem to always forget is THE GOLDEN RULE! I think if you don't have anything good to say, don't say anything at all. I love this website. I've learned so much here. I hope that everyone can stick together. It baffles me how people seem to get enjoyment out of others pain. God be with us all.
Kristi

[trytosmile]

Well put, :flower:

My thanks for all that you have done. This board has got me through so much ! It has been my life line ! Just want you to know how much I appreciate all that you have done !

[Imustpee]

Yay Jill!! :grouphug: Thank you for posting this!....sometimes we need to be reminded of that old childhood saying about " Sticks and stones"....This is the BEST support group I have ever seen.....I wish it were around in the 60's, 70's and 80's...I could have really used it then..:) ....I have had wonderful support with my surgeries and all the ups and downs with them..I am counting on everyone to help me get through the next one, it's going to be a rough ride.:dizzy: ....I can't tell you how nice it is to talk to others that UNDERSTAND exactly how you feel..I never had that before, never knew other person that had it.....trying to explain I.C. to someone and they look at you and say " Well, can't you just hold it a little longer"?.." Drink cranberry juice, that will fix you right up"...:headbang:
I would like to thank you and Donna for this great board where we all understand each other...:kiss:

[emilyrose197377]

Nicely put Jill.

[sandi303]

I know there are tons of people who are like me - don't post a lot, but are on here almost daily reading & looking for advice, suggestions and info. from other posters. I must say that I feel certain that if I hadn't already been a user for a while before this all happened that I wouldn't have stayed. If it had been my first time on & I read all those posts that have been posted lately that were about people leaving & people begging them not to I wouldn't have stayed because it's all about first impressions. I wouldn't have known how valuable this place really is with info & support. I'm glad, Jill, that you've posted & put an end to all that nonsense. Now we can get back to what this board was created to do.

[Dixiefireball]

Thank you Jill!!!!! WELL PUT!!!!!! I do hope and PRAY that the ones causing this trouble will read this and it will hit home to them....We need each other support, caring, love, understanding. Not ranting and raving on other innocent people who doesn't want nothing but the understand hope we can give them here...
Thanks for trying your best to keep this place a safe, meaningful place so we all can be here for each other!!

I admire and really respect you!!

Rhonda

[hoping4acure]

BRAVO Jill! I really hope the people who fit this description...get the hint.

I truely admire and respect you and Donna :)

[Katrina]

Thank you Jill!! :) :) Well put!:)

[sandramac]

Jill well said!hugs Sandra:kiss: :woohoo: :grouphug: :cat:

[maryla]

Thank you Jill, :kiss: I really haven't personally thanked you for starting this website. So, thank you for both, I really loved the way you said if we allow someone to basically control us, we give our power to them, I say that all the time! I'm not for sure what exactly happened here, but God Bless them all!

This site has brought me healing as well as knowledge, for that I am most grateful,:smile tee I pray that I can be of help here also!:pray:

:grouphug:

[Janie Miranda]

Hmmmm. I've been away a bit lately since I've been pretty much in remission but obviously I've missed seeing a lot of this. I am sorry that some folks have found friction here, I've always found the ICN to be a wonderfully supportive place and believe I am in remission, due in large part to the help and advice I've found here on this site. Hopefully everyone will take a deep breath and go on. This board has a lot of wonderful, caring folks!

[tigger_gal]

very well said.. I am sure that everyone of us have at on point have felt as tho there post was "misread" I am glad you took the time to make this awsome post. Some people do not know when to quit, and then if it isn't enough the make new identies, and make make matters worse.. Its sad to think that you have to get on here and sit at your pc for hours on end to see who has more then one identy.. is there away you can block multi identies from the same isp?

[Silverfern]

Top marks Jill! So wonderfully put.

I'm another one who hasn't got a clue what's been going on around here lately, but it doesn't matter. What matters is that the majority of us come here for support and to try and help others who are struggling like us with this disease. I guess there'll always be that one percent who spoil if for the rest, but only if we let them. That's not going to happen, as this site is superb and nothing or no one will ever change that.

Thank you Jill and Donna for all the tremendous work you do around here.

Hugs

[K9wife]

Once again, absolutely AWWWWWWWWWWWESOME!:woohoo: Everything you all have said makes perfect sense! That was the point I was trying to make with one of my threads(which I asked to be removed from the Boards because of so much controversy) "that was named "I urge caution" . I wish I could have said it the way you did, Jill! We are so lucky to have you watching our backs. I agree totally with you comments about there being all kinds of personalities here, and that we shold just choose to ignore or walk away from the ones bringing us down. If only it were a perfect world! I have found even within our local support group that even one strong, overbearing personality may scare away a newbie or less assertive member. Guys! We're in this TOGETHER,:grouphug:
Once again, Jill, great GREAT job you're doing!

[blackcat25]

Once again, well said Jill.:flower: I have no idea what has been going on, but from what I've seen everyone on here has been SO supportive and caring, and it is really sad that this nastiness has been going on.

[Britgal]

I also echo the same sentiments, well put Jill. I know when I was first diagnosed four years ago, the IC Network was so helpful and informative and got me through a very rough patch dealing with IC. I still come here as often as I can and know that I have a wonderful support group to come to for information and support when needed. I have been very lucky and found the right combination of meds to help me out and am enjoying remission in the past few months. I just want to add my thanks for the wonderful job you are doing in making my life a lot easier knowing that you and Donna are helping so many of us deal with IC in our every day lives. I also would like to add my thanks for the birthday wishes that were sent to me. The IC support network is a big part of my getting my life back and dealing with my IC, even though I do not post as often as I did, I consider myself very fortunate to have such a great support system, many thanks Iris.:flower:

[SusieQ045]

Jill, i think that you are a awesome person. i dont know what i would have done if i didnt find the ICN. you help all of us so much i just want you to know how much your appreciated.
thanks

[IC SARAH-CPP]

Nice post Jill. I agree 100%. You have done so much for all of us. I will always be grateful for all you and Donna and all the others do here.
This is off the point but what happened to the just venting board? Was that taken out b/c of all this drama? I really liked that board, I was sorry to see it go.
Thanks again!
Sarah

[beccasark]

I am very new to you site and I have thought long and hard if I ever would write to you. I have had questions that so far I have not seen others ask about and so I thought that I would ask for help. But now I come across your post and it reminded me of what I have always told my children. Don't let the sins of others destroy the joy in you. Don't let them bring you down for if you do they have won power over you. There is always going to be people in this world that has to have the last word or the worst illness so we need to let go and let God handle this. I feel that what you had to say to your readers was long coming and came from the heart somthing they needed to hear. I need to hear. Keep up the great work that you are doing.

[icsonja]

Jll and Donna, you two are amazing and , I want to thank you both for what you sacrafice to help us out.
There have been a time or two when I felt that due to the emotional issue being discusssed that some take things the wrong way and run with that, I am truely sorry if I have contributed to anyones distress, that is the last thing I would ever want to do. We all have enough pain to deal with.
Donna BTW your posts are so gentle they feel like warm water when I read them.
Sonja

[Kimchi]

Very well said and thank you so very much for all your hard work. And thanks for an amazing forum where I and other ICer's can come for support and advise or just plain ranting. I enjoy reading as well as posting here. It is a pity that someone always has to be the bad apple. WHERE'S THE LOVE PEOPLE? :smile tee

[talksick]

Hi Jill,
I think it's interesting that you have just recently posted on this topic. I just learned this lesson about 3 weeks ago myself. I was IMing with someone (Not on the ICN, but on AIM) who became completely erratic. He attacked things that I said and called me some pretty bad names.

In the past, as you said yourself, I would cry and think that I did something wrong. I did at first. But then stopped myself and realized this person has a personality disorder and there is nothing wrong with me. So, I just totally ignore this person now. I realize he is not worth the effort and I am not going to waste my time arguing with someone who is mentally ill and will probably never be able to think rationally.

If there's one thing I've learned from psychology (I am currently in a psychology graduate program) it's that there are many people out there with issues and you can not take their behavior personally. People that need constant attention, are angry, have no regard for the feelings of others...etc. When you notice these people the best thing to do is just totally disregard what they are saying and stear clear of the situation. Unless you are their therapist back away...you will not get anywhere with these people you will just wear yourself out!

(PS. Jill thanks for running this amazing website. :) )
Kim

[ICsmiles]

Jill - GREAT POST. Well put; thoroughly and kindly explained.
You and Donna both have been here for me for years! Especially when I am having physical or emotional flares from my IC. Donna got me through my first hydrodistention and you were there when I had to change urologists and go to a pain clinic. In the past few years, this is where I come when I am flaring and when I want to research a new IC development. I am SO GRATEFUL for this site. Thank you for all the great work you do. I have always admired your tremendous contributions.
... Sharon

[ICNJess]

I have been with the ICN for 3 years, and in that time I have had my fair share of anger and rudeness. I've given it, I've received it. I felt angry at the world for having this "condition" and I took it out on anyone and everyone. When I finally realized that you just have to deal with what you are dealt, I was able to release the anger and grow up a little more.

We are all so angry at some point during our IC journey, and unfortunately, we take it out on these message boards, and even off of them. I have learned to take a step back and take a break when I feel frustrated. I hope others will do the same.

:grouphug:

[Sandra]

Jill - I'd like to thank you and Donna for all the continuous hard work and effort you put into this website and also for caring about each of us and never being selfish. The story you wrote was well done. It was also very heartbreaking to read about the girl who passed away. So, so sad. Thanks again. Without you guys, we would not have this wonderful website to turn to and believe me, it helps since some times you don't get this personalized attention from your own doctor. Best wishes always,
Sandy from CT

[weezer]

I've been away from the boards for a few days, so I was kind of shocked to read this post, because I had no idea these sort of thing happens on the boards - I always find them so helpful and encouraging. And I always try to give support because that's is what I get from these boards. Jill, a usuall, you know how to word things wonderfully.
Weezer

[ISONormal]

Fortunately, I've been busy and not visited the board much at all lately, so I've missed all the drama. I have seen message boards blow up before due to high levels of emotions, and it's amazing to me how much people invest in this. Granted, we're all in a tough situation, but you just cannot -- cannot -- get so emotionally involved in each other's lives. Use this as a place to get information, give the occasional encouragement, and get some, too, but good grief. One thing that really is annoying is when people keep posting that they're leaving a board, as if they want everyone to beg to have them come back. Which they faithfully do. I think that's the sign of a drama queen, and that there are other things going on there that are indicative of problems. If you are going to leave, just do it. Why the need to announce it? Now remember I say this without having been the board in quite awhile and I'm just peeking in tonight and have not even been to the other sections of the board yet. So I can't be talking about anyone specific. But if your conscience "dings" you, maybe this is your learning experience/opportunity, so to speak.

I must add that it's frustrating on a message board like this that the learning curve never seems to go up much. There are so many newbies and they keep posting the same questions over and over again without having done their own research. Google, people, google! The answers are all over this site and a few others. Seek and you will find. And you'll empower yourself by doing so. This is not to quiet discussion or questions, whether from those who are newly diagnosed or others with longer experience, but you can strengthen yourself and we will all benefit if you do as much research as you can, whether you are a newbie or have been in IC Land for much longer. I promise that you will find interesting, valuable information which I dutifully share with you all.

I'm glad you brought this up, Jill, and I really, really hope that people learn from this. A little maturity goes a long way towards improving the outlook for IC.

[Mel53H]

I love this board and think that you and Donna do a fantastic job. I did not realize that anything was going on. I hope that it stops.

Thanks so much!!:smile tee

[sacausa]

Wow, I did not realize any of that was going on either! When I was first diagnosed at 16, it was very difficult for me to come to terms that I have this illness... this message board helped me see that there are other young people who also have this disease and that I'm not alone. I'm so thankful for it because it has made it easy for me to keep up to date on new treatments and developments for IC... without this board I would never have thought of taking Cytotek and now that I am, for the first time in 3yrs.. I'm starting to have relief! I'll always be grateful for that... Hopefully the looney people will back off, you've done a good job of diffusing the fires as it seems that most people had no clue it was going on (me included)! :flower:

[K9wife]

Bravo Jill!!!! I rcently asked for one of my posts to be deleted trying to say the same thing (but Jill says it much better!) under the post "I urge caution", but got so much angry response that it just wasn't worth it for the purpose of the ICN to be a place for such negativity. You sum it all up....once again!

[hoping4acure]

ISOnormal:

:bow: THAT was beautifuly put!

[mayray518]

In 1992 when I first got IC there was no internet and, therefore, no sites to go to. I thought I was the only one in the world with IC. When I got a computer and logged onto this site and read the posts for the first time I burst into tears. Every emotion I had gone through with IC was reiterated by those who had IC. It was wonderful to get on the chats and talk to people who had been suffering for years as I had. I feel great now but I still post and hope to gives others hope that there is a miracle out there for everyone you just have to find out what helps you.

[sacausa]

What does the ignore list do?

[hoping4acure]

it will block out anything that the person responds to or says--any threads started by the person is also ignored. It will say "such and such a person is on your ignor list"

[babygirlh1]

I'm fairly new to IC (officially diagnosed 3 years now), but fairly new to this board. I told my therapist about this board and she thought it was great because no one in my life understands IC.

Thanks Jill for creating this for us. Thank you and Donna for monitoring it and trying to create a safe place for all.:smile tee

[mayray518]

I dont get to come onto the site as much now only because I was given hope by the site, feel better and am back to work. Dont people realize that we come here because others with IC know what we go through. It's difficult enough to have to go thru the explanation of IC with people who have no clue what its like much less to argue with those who try to help. When I got IC in 1992 there was no internet and I thought I was the only one in the USA with the disease. When I first logged onto this site, I can not explain how wonderful it was to see posts of people going thru exactly what I felt and thought. We are so much more fortunate because of this site.

[glassd18]

Okay, wow!!! I just read this today!!! I'm a little slow on the uptake sometimes.lololol Well put Jill, and I appreciate having somewhere to go to when I need support!!! I have seen what your speaking of here on this site, and I quickly ask to delete my post if I feel something is going awry!!! We are here to support each other.

[curlycue]

Thank You Jill. This site has helped me 100% The ladies, the information the knowledge that everyone here has. GRACIAS.

Thanks Jill for the advice on the Acacia Fiber I started taking it right away and its been 2 weeks and my stomach allready feels great. God Bless each and everyone of you ladies that have helped me since I have been on this site. It has been a godsent (I dont know if that is a word) to me and my family. Yea My family always tells me if I am have a question or issue with IC or Fibro,IBS. They always state to me "Mom ask your IC friends".:smile tee:smile tee:smile tee:smile tee:smile tee

[joann2008]

Thank you for making and keeping this support forum truly a SUPPORT forum. These various discussion boards truly give me strength and insight. I appreciate what this has done for me in these first few months or awareness and soon - acceptance of who I am apart from IC. Thank you for maintaining and creating this beacon of hope for me and others. :smile tee

[ICNLesa]

"I'm going to share the most painful example that we have of two patients who didn't get along. One night they began bickering about whether IC patients could successfully ride horses without irritating their bladder. What started out as a simple difference of opinion became a mean spirited personal attack. The tragedy was that one of the girls was killed in a car accident just days later... and the other had the audacity to ask "but what about me." How selfish was that?? Shameful."

Oh, Jill....how I remember....and with a broken heart still.

What seems to the trickiest part of online message boards is that the written word can be interpreted in so many different ways. One person may read a post in a way that wasn't the writer's intention at all......it's easily done and sometimes the beginning of a flame war. Over the years I have learned that if I'm not sure if I'm interpreting something correctly, I ask for another set of eyes before jumping to conclusions. We are a species that relies on facial expressions, voice inflections, and body mannerisms to accompany what a person is saying.....to get the 'full picture'. Unfortunately, we lose those extra cues through the wonder of the internet and have to rely solely on the typed words in front of us. I always try to keep that in mind as I read posts.

Of course, there are those times when there is absolutey no doubt that what someone posted, is what they meant...in all it's straightforwardness. Eleanor Roosevelt said "No one can make you feel inferior without your consent." I cherish those words of wisdom and remind myself of them if I am feeling 'shaken' by something that someone has said or done.

I am so proud of the ICN and its community of participants.....we are not alone here....I hope that anyone who visits knows that in their hearts and will never hesitate to ask for help if they find themselves in an uncomfortable situation with another user. At the conception of the ICN message boards (years ago) we learned so much about the dynamics of online interaction and support.....and we learned it quickly. Have faith in our fearless leaders (smiles)! They can and WILL help if you call on them before things get too far!

[icnmgrjill]

Lesa,

We sure learned the hard way, didn't we?? Yikes, but that was painful those first few years.

Jill :)

[ICNDonna]

I'm thinking of a song with a line that says, "Aaah, yes, I remember it well." We've learned a lot --- and yes, the hard way.

Donna

[Michelle1956]

I am a new IC patient and I don't mean to seem to feel sorry for myself but I need input, suggestions about dealing with IC without crying, being upset, and dealing with how much it interferes with my life. I know others have probably dealt with it better than I have. My family and friends tell me there is no reason to be upset and that it is not that big of a deal.

Jill, if it is possible I would like a reply from you because of all of the years experience you have with IC and with this support group.

I will of course read the posts some more for info.

[Glenda2]

I am so very greatfull that I found this web site. :woohoo:

It has been a real life saver for me. :bow:

The people here are fantastic. :welcome:

I can't imagine anyone being mean here. We all suffer from this scarey illness and we really need to lean on each other for support. :hi:

Without the support and advice suggestions , I think I would cry myself sick.

Only being diagnosed 8 days ago (10/12) I am so new to all this and don't quite understand anything about this. :loco:

So I have alot of Questions. And appreciate all the answers. :rolleyes:

[Oscar]

I own a small forum, on a different subject, have moderated two others, and participate in 7 or 8; some every day, some once in a while.

I commend Jill and the moderators for keeping this place shipshape. I KNOW what a monumental task it can be to keep after the "problem children", especially with a board this size. I have seen forums go into meltdown and self destruct. Not a pretty sight, and usually a great loss to the cause. Thanks for being here.

The lack of body language very often creates a disconnect between what was said/meant and what was read. Also, people, from behind the security of a screen, can say things they would never say to your face. And then there are people that WOULD say mean things to your face.

Indeed, ignore them, and find solace in the fact that 99% of the people here, and out there, are decent folks.

[Flowergirl]

Good for you Jill. You go girl!!! By the way thanks for the wonderful site.

:smile tee

[icnmgrjill]

It's Donna and every single Support Leader and Support Volunteer who deserves ALL the credit in keeping these boards safe and sane!!! They are angels!

[outbackdogs]

Don't know where to post this:
Pelvic Floor Disorders Lecture
Tues, Jan 12th at 6PM
Bedminster Medical Plaza
1 Robertson Dr, Bedminster
Registration call 973 322 9998

[glam46201]

I am so glad I came across this site. I finally googled, "why is my UTI not going away with antibiotics"? This is the site that popped up and I am so grateful. Thanks to Jill and to all of the Support Leaders and Volunteers for your time, the posts, the videos and the advice from other members. I order regularly from the store and find the products and the diet really help. Even though I am new here, this site has changed my life, thank you.

[icnmgrjill]

Glam.. thank you so much for your kind words. You made my day!!

Jill :)

[bob04951]

Thank you Jill. Have not have confrontations but have tried to console a few who obviously have other issues. Feel bad for them, but you are correct, this is not the place for that stuff.

Thank you again for this site, it has been a Godsend for Bob, and we have gotten a lot of really good helpful advice that we never would have found elsewhere. Jill, wife of Bob

[Jem]

I am stunned that someone would set up multiple accounts and carry on fake conversations with themselves!! There is no need to do this when the people here are so friendly and supportive. I have never had a post go unanswered. We all have off days, where we read too much into things or misinterpret things. On the other hand, sometimes peoples responses can be written thoughtlessly and seem a little cold or upsetting. But most of the time these things can be chalked up as 'misunderstandings.' I'd like to apologize if I have ever 'dropped the ball' in this regard! The method of communication which we use in the virtual world is a very un-natural one, and so differrent to the real world where you can read people's expressions, hear their tone of voice and get a much better understanding of them. (As Jill pointed out.) In psychology we learned that the actual words someone speaks only account for a small percentage of the message they convey. It can take a while to learn your way around virtual communication and often this means learning by your mistakes! None of us are perfect!
I hope the person with 'multiple personalities' gets the help and support they need and that this may be the wake-up call they need to do so. I hope they don't feel too rejected or embarrassed by what they have done. I hope they are okay.

Jem x x

[Linda May]

that is so true i come for support, info, and try to help others and thats the way it should be. hugs to all

[chhhb]

I'm glad I read this but am doubly glad I've not had this experience on the ICN web site. I'm new here as of early March and have been asking a lot of questions because I'm in such a long flare and need to ask for help but everyone who has responded to me has been very kind and informative. I'm sure I would have been taken aback had I had an experience like what Julie was talking about here. When I respond to people I also try very hard to be encouraging or hopeful for them. Thanks for reminding us that our behavior affects others and that we need to be thoughtful, and kind when participating on this site. Thanks!

[kkmurals]

This website is so confusing, I only registered with this forum to give possible hope to some of you out there suffering from IC. I have had IC for years. During the past 2 yrs it became unbearable, the pain was so intense that I went to E/R 4x in one month! I found the cure by accident. After seeing my 9th doctor, she had me tested for Lymes disease, which came up VERY positive, so I began antibiotic treatment for Lymes. This treatment kicked off another IC flare, plus I had lesions in my mouth which was diagnosed as candida. While being treated for candida with ketoconazole, my bladder cleared up! This is the first time in 2 yrs that my bladder has been normal. No pain, no spasms, no urgency. I read online that doctors don't believe that candida can live in the bladder. Well, I think they're wrong. I don't believe the Lymes had anything to do with my bladder pain, but treating the Lymes led me to the cure for my bladder.

I am posting this PS one year later. The candida was actually lichen planus. I am doing SO much better after quitting ALL drugs prescribed like Elmiron, percocet AND vitamins too!

[Linda May]

From all I read about IC there is no cure yet; you are just in remission in which I am very happy for you. If you read enough material on IC you will find the same thing. Sometimes people go into complete remission for years and one day they flare. All we all can do is pray for a cure or hope every icer goe's into remission till they find a cure. I am not being negative I just read the facts to IC. God Bless you and keep you healthy stay in touch.

[kkmurals]

Nope! I am not in remission, I already know how that feels after having IC for years. This is completely different, relief that happened VERY fast, within a few days. Believe what you want, but I thought it might give hope to some with open minds.

[Mothergoose]

I seem to remember someone else posting that there bladder was much better after being diagnosed for Lyme's disease.

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