At least it isn't AIDS

[buana1]

Recently a very dear friend said that to me. It was said to me after I said something in jest, which makes me think he had been wanting to say it for a long time. I KNOW I am not going to die from IC and I feel so guilty having a hard time dealing with IC when there are others out there who will die from what they have.

How do you respond to this?

[ldwall]

You tell him to stick it. Really, you say thank God it isn't fatal, I am grateful that I won't lose my life to this. However, you can prevent AIDS, there was nothing I could do to keep this from happening, and it will make my life 100% different from what it used to be. I will lose parts of myself, my life, even friendships that were important to me. For that I will always be sorry, and sad about. Then tell him you are thankful for his concern, but if that is how he is going to help then tell him to stuff it.

Sometimes people say things like that out of faked concern, they are just pretending to care. In reality they are telling you that if it isn't going to kill you then you don't have a right to complain. Or even worse, that you did somehting to deserve it, so stop whining. Either way, that kind of help you don't need. DO NOT FEEL GUILTY! Feel how you need to feel, and cut people like this off at the knees when they try to throw that kind of stuff into your face.

Good Luck, Lisa

[ryanm]

Well, I know this sounds selfish, but I've gotten over that wink.gif In the beginning, I used to want a disease that would allow me to die because I couldn't get adequate treatment for the pain, and reasonable understanding from people...

On an unselfish note, things could always be worse, you know what I mean? Like, you tell someone you're broke and it's a HUGE problem to you, then they say "well at least you're not homeless".. Or you tell someone, "hey I have this awful disease that makes me feel like part of my body is on fire, I have to pee all the time, I don't sleep well, etc..." and they in turn say "at least it's not AIDS.. mad.gif Just let me complain in peace people!!!

Grass is always greener to some people.. I guess you could tell them "Gee thanks for being so super sympathetic".. biggrin.gif Geesh! I'm sorry dear, probably not the answer you were looking for. As you can tell, I probably don't have the best method to deal with this. BUT, just to let you know, you're not alone, I know I've listened to people say the same thing to me before.

until you find a fellow IC'er with a less pscycotic answer... <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[ryanm]

Phew! Thanks Lisa for making us both feel better, for sure!!!

[ICNLesa]

I've heard similar comments and I have to admit that I've often thought 'thank goodness I don't have cancer." Especially when I meet someone who does and is going through chemo. We are all grateful that IC isn't a fatal disease but in no way should our pain be trivialized. Any pain in one place for a length of time is awful.....IC, arthritis, back pain....whatever. Sometimes I think..."I should be grateful but I'm not, I'm angry. My life has been turned upside down and no one knows how to fix it!". The impact of IC on our lives can be dramatic which of course, makes us feel robbed of a normal life..or the life we once had.

Interesting issue you brought up!

ICNLesa

[ICNDonna]

I know exactly what you are feeling. Was your friend trying to offer you comfort? If so, I think the best way to handle it is to receive the comment in the spirit in which it was made.

I have to admit that, like Lesa, I also sometimes feel very fortunate.

Warm hugs,
Donna

[Maureen]

I would like to make one small comment AIDs is not preventable for some people. I have a friend who is a hemophiliac who got AIDs from blood products that are used to keep him alive. In the early 80's blood was not screened.

[ICNDonna]

You are right, Maureen. Some people also got AIDS from blood transfusions not too many years ago. And some babies of infected mothers are actually born with it.

Donna

[nccarol]

I have heard everyone of the comments of false support and supposed comfort that now I am pretty crued and blunt and then walk away. No it's not aids or cancer cause if it was at least by some miracle I would croak and die and not have to live this hell, and walk away. Sorry I'm in a lousy mood and tired of those ignorant people out there. <img src="graemlins/cussing.gif" border="0" alt="[cussing]" /> <img src="graemlins/cussing.gif" border="0" alt="[cussing]" /> <img src="graemlins/cussing.gif" border="0" alt="[cussing]" />

[Teri]

I get VERY UPSET about the "well at least it's not" remarks......sorry folks but with this disease I and my family and relationships will suffer until some miracle happens and there is a treatment for ALL ICer mad.gif

When you loose someone to death, they are gone, the grieving process begins and sometimes it takes many years to get over the loss of that person. Well, I'm sorry but my family has been grieving my loss since 1994 after a dr butchered me. And, there is no end in site. My husband has lost, my children have lost, my grandchildren have lost and most imporantly, I HAVE LOST <img src="graemlins/cussing.gif" border="0" alt="[cussing]" /> If I would have died in 1994, the grieving would be finished by now~

I am only 51 years old and if I am not in a wheel chair in the next 4 years it will be a total miracle. Yep! You bet your bottom dollar it will be to top model and you can also bet your bottom dollar that if someone says "well, you're lucky it's not" I may use an automatic control and run over a foot or two!

[buana1]

Thank you for all of your replys. He and I had a long talk today and I think as Donna said, he was trying to offer confort.

I am so grateful IC is not fatal. There is just so much to deal with, both the physical and the psychological things --you all made some good points. Thanks.

[NB]

If a friend ever says "at least it's not AIDs" to me, i would feel hurt and alone.

Yea, at least it isn't aids, just because it's not life threatening doesn't mean you should always grin and bear it.

If someone says that and tries to play it off like they are trying to comfort you... i'd say they are full of s**t!
If they really meant to do so, their version of "at least it's not aids" would sound more like, "I'm sorry your in so much pain, i'm glad it's not life threatening" That's more like it.
But don't let those people get to you, i know it's much harder when it comes from a close "friend" <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

[Lauren]

Dear Buana -
When I hear a comment like this ---for ANY illness/disability----I hear the (I think)
implicit messsage, STOP TALKING ABOUT IT.
Or in other words - the stiff upper lip syndrome!!
There is not only a mixed message, but an
implied disparagement of your pain/frustration, etc.
Great that you were able to talk to your friend.
sending HUGS, Lauren
<img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[lainie]

Finally, people feel the same way!! My mother-in-law said "at least you're not in diapers!" and made another comment later on about a lady needing "DEPENDS"..literally could have snapped her neck right off her spine! People say "so, you gotta pee, then pee" or "we've got bathroooms!" Did it ever occur to anybody with a sliver of a brain that since I can no longer work(i am also only 31), that this must be a serious disease?! <img src="graemlins/banghead.gif" border="0" alt="[banghead]" /> Thanks for letting me vent and I will be hear to listen to everybody else's rage-fests!! Lainie <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[nccarol]

I have come to the conlusion that most people I know think it's just about peeing alot, like the Gotta Go-Goota Go comercial, I hate that comercial. They do not comprehend the pain and deterioration of quality of life that goes along with it, nor are they interested. It is not just a need to pee, it is intense pain before and most often after. They compare it to incontinence or like one neighbor who had a bladder tuck for incontinence after age or giving birth and thats what they seem to compare it to. Those women are working full time, raising families and I guess they feel why can't I. I am so tired of explaining I just don't I avoid it. <img src="graemlins/banghead.gif" border="0" alt="[banghead]" />

[Teri]

I sometimes think I am turning more b****y with my IC....when people say "at least it won't kill you" I can answer 'how do we know that?' Cold answer but pretty cold question too.

Hubby took me out of the house for the first time in 5 days yesterday. I was so sick that I could literally NOT STAND UP STRAIGHT because of pain. But, I looked great mad.gif mad.gif mad.gif

somedays it just so much easier to lock the doors, pull the sheets over my head and refuse to answer the phone.

today when I ask someone how they are, I make damm good and sure that I have time to listen to their answer because I refuse to blow others off as I've been blown off.....

thank God for the ICN <img src="graemlins/blink.gif" border="0" alt="[blink]" />

[LT]

Teri, I couldn't have said it better myself.

Sometimes it feels like I DID already die, the person I was is totally gone. This DOES take a toll on friends and family.

My mother died from cancer when I was 17. It took until my late 30's to remember her any other way but ill. And that was a disease that had an ultimate end. In many aspects, I think cancer is easier to deal with than this never ending nightmare--for the patient, and for the friends and family.

[NB]

Yea, those Detrol commercials aren't really about IC but over active bladder (two separate things). But still, people with over active bladder still have other problems arising from having to pee alot than just having to pee alot.
They kinda make it seem like no big deal on that commercial. The jingle they sing for it makes it sound like the diagnoses is light and funny and something that can just be shrugged off.

[Shelleynz]

My answer to "at least it won't kill you" used to be "I wish it would, then at least it would put me out of my misery." I meant it too. I was suicidal with pain and insomnia. I think people found my response a bit shocking b/c always shut them up. <img src="graemlins/lmao.gif" border="0" alt="[lmao]" />
Shelley

[buana1]

Had Donna not said he might have been trying to be supportive, I might not have bought his explanation. It's so easy to see the negative sometimes. This friend is always supportive, which is why his comment hurt me so much. He clarified what he meant, and we had a long talk.

I wish everyone in all of our lives could be as understanding and easy to talk to as he is.

I have another close friend who always reminds me that someone else has it worse. I've just come to accept that she does care about me, but cannot understand. And she thinks that I need to be reminded that things could be worse. In other words, I just tune her out. I wish she could be "reached."

[mrm]

"Finally, people feel the same way!! My mother-in-law said "at least you're not in diapers!" and made another comment later on about a lady needing "DEPENDS"..literally could have snapped her neck right off her spine! People say "so, you gotta pee, then pee" or "we've got bathroooms!" Did it ever occur to anybody with a sliver of a brain that since I can no longer work(i am also only 31), that this must be a serious disease?!"

Nice. I'm 28 and have been in diapers for about 8 years now. And for the record I would rather have AIDS or Cancer. It's true with a terminal illness chances are good that in 5yrs you'll be dead or in remission, either way you won't be suffering. I found a new Uro (not very promising) and finally broke down and went to a pain management center on the 19th, they gave me some hope.