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Post by tfaith on Oct 10, 2007 7:20:31 GMT -5
do any of you tend to have difficulty with your friends and family understand the things you go through with endo? my mom is convinced that i just have a low threshold for pain, which i do not think is true....she along with so many others just can not fathom the kind of pain you go through with endo....my boyfriend acts like he is getting sick of hearing me talk about it. i said last night how i didn't feel good and his response was "you never feel good" like i could do something about it! i find it frustrating as of late for my friends and family to even understand. i have gotten very little support from anyone, and feel down a lot lately. i was at hallmark the other day getting some cards for people i haven't seen in awhile, and saw some support cards for health issues, and just got really sad and disappointed that not one of my close friends had said much about it, let alone get me a card. i know that may seem stupid, but from my view, seeing as i get random thinking of you cards and the like for a lot of my friends, and didn't get anything similar to that from anyone, kind of upsets me. but then again i know that i have all kinds of mood swings also so i dont know, it may just be me....
thanks for listening!
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Post by cass on Oct 10, 2007 8:19:17 GMT -5
its hard for anyone to really relate to something that they can not physically see. well thats what i found. when someone comes in with a broken arm they can see there is osmething wrong and assume that it is painful but what i found with my endo is that noone could ever see how much pain i was in. i could tell them but it just wasnt enough. having a bowel resection and having endo removed from every pelvic organ made everyone realise just how much pain i was suffering with for the past 7 years... my fiance has always been supportive so without him i think i would have gone insane. now people ask me how i am feeling which is so weird!! my fiance never gave up on believeing there was something wrong with me as it was his hand i was squeezing when i was on the floor curled up in a ball, but for everyone else there period pain was always worse!
its hard but honestly i have learnt to ignore what people think. people know now the amount of pain iw ent through and i guess as long as my fiance understands i dont care about anyone else's opinion. maybe you should tell him to come on here and read some stories! ill enlighten him on some painful experiences!
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Post by tfaith on Oct 10, 2007 9:43:50 GMT -5
i have found that since you can't see the source of pain, it isn't taken very seriously...it drives me nuts! my mom is a little harder to understand stuff like this, with all the different stuff doctors have told me and the fact that i am still in pain...i dont think she really sees it as a disease that has no cures....i did print out a bunch of stuff about endo, so she can get some knowledge on it, but i am not sure if she has even read it yet....my boyfriend has been pretty understanding, he took me to the ER and visibly saw how much pain i was in there, which i think was an eye opener for everyone that doubted the severity of my pain....i normally don't cry for anything, esp in front of people, and i was balling my eyes out in the ER....it seems like it almost annoys him that i don't ever feel good, and say that a lot. i voice it just because it does interfer with our plans/life at times....i don't know its just rough all around
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Post by ouchy on Oct 10, 2007 9:45:34 GMT -5
We also have a thread called something like "Non-Believers!" in the Rant and Rave forum.
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Post by minnie on Oct 10, 2007 9:52:23 GMT -5
The best thing is, if you are having a lap or recently had one, get in touch with the gynae and ask them for PICTURES! Then you have proof!
Someone on here recently had a great anecdote for men. Tell them imagine having their left testicle stuck to their right leg with superglue and try functioning for a day! That's get 'em!
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Post by ouchy on Oct 10, 2007 9:56:54 GMT -5
^LMAO!
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Post by tfaith on Oct 10, 2007 10:12:25 GMT -5
oh that is a good one! the closest i got was "imagine having someone squeeze your testicle like a water balloon with no mercy".....that ^^^ is waaaay better though!!!!
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Post by isit5yet on Oct 17, 2007 16:57:58 GMT -5
i'm still trying to learn how to ignore the disappoinment i feel from family and friends wild thoughts/opinions. it's tough, hang in there though. everyone here understands.
one of my good friends sent me a nasty email because she thought that i was depressed due to not hanging out with friends as much... she even called me 'poor little sick (my name)'. had she not settled down i would have had to turn completely away from her to protect myself.
try not to spin your wheels too hard to get family and friends to understand. it's just not worth your health. i believe that they can't understand at no fault of their own. it is what it is, unfortunately. xoxo
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Post by kb on Oct 18, 2007 1:09:46 GMT -5
What a b@#$h!!!!
People like that, arent friends.
I mean even if they dont get it, and i know not everyone can, its just too hard for most people to really grasp what we go through, they can at least be nice.
If it was depression, that girl aint helping by saying that, thats not the way to deal with it, christ!!!
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Post by cass on Oct 18, 2007 2:29:47 GMT -5
I was at my fiances twin cousins birthday last month. It was a real big thing for me to leave hte hosue and make an appearance and iw as struggling as it was to combine socialising with his family with my frequent cramps and running to the toilet. I was standing there chatting to my best frined (who happens to be my fiances cousin) when their other cousins fiance comes up to puts her hand on my stomach and says "ohhhhhhhhh your not preggies yet... you better get a move on with that boy of urs as u wont be able to have any at this rate with your surgery and all." I was furious, but smiled and walked away....
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Post by minnie on Oct 18, 2007 4:56:14 GMT -5
Good strategy but oh, to have slapped the stupid girls face! Sorry I am not one for violence but that is an awful thing to say! Silly B*TCH
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Post by tfaith on Oct 18, 2007 10:23:51 GMT -5
oh that is horrible. it drives me nuts when people do that. i had a similar situation....the day of my surgery happened to be one of my 'good friends' birthday, and of course they were all going out. i start getting text messages about "why don't you ever come out with your friends anymore, i cant believe you got surgery on my bday, blah blah" what the crap? selfish much? the one thing that gets me is that i notice i tend to talk about it, when i am trying new things and such, and people tend to get annoyed or tell me i must not have a high pain tolerence....like they know....ugh!
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Post by veronica428 on Jan 11, 2008 17:22:31 GMT -5
It drives me insane when people act like they really do understand, but they don't. I'll talk about how bad everything hurts to my parents, and its always yeah, we know, you're going to school anyways, blah blah blah. I understand that it might be annoying to listen to me complain all the time, but its not like I'm just complaining for no reason or to drive them nuts. And whenever I try to talk about it to my friends, its always oh that sucks and then they change the subject. Its so frustrating. I don't want everybody swooning all over me asking me how I am all the time. I don't want tons of sympathy from all angles. I would just like a little empathy at the least, but sometimes it seems like that is way to much to ask, and that can make a person sad.
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bad19
New Member
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Post by bad19 on Jan 19, 2008 15:19:44 GMT -5
I know EXACTLY how you feel! Since all of my endo problems began (shortly after I turned 18, and I am now going on 21) I feel like I have lost a lot of friends and most of my family seems to be at wits end (with the exception of my grandma and boyfriend) with me! My friends that are left just don't seem to want to hang out with someone who is sick all the time as much as they normally would. Everyone in my family and a couple of "old" friends say that I complain too much, but there are days where everything is sooo bad that I almost can't control it. I try not to because I know that it affects them negatively, but at the same time I think, "why can't I just tell people how I am feeling" I mean this is some scary stuff to deal with at this age and I feel like I hsouldn't have to have a go at it by myself! Either way I know exactly how you feel and I can only imagine what it would be like dealing with all this at an even younger age as me!! So hold you'r head up high and remember that "Those who matter don't mind, and those who mind don't matter!"
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nuala
New Member
Posts: 33
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Post by nuala on Jan 21, 2008 9:22:59 GMT -5
Reading this thread is like reading my own mind. The past year I have had to kind of give up going out to socialise because I always had to end up coming home about half an hour after going out due to the pain. But now when I do see my friends, they judge me and say things like "Oh aren't we good enough for you anymore" Which drives me mad! I too have told them all that im not well but I dont think that they understand exactly what Im going through. I have very few friends who do actually understand, and they are the ones who come to see me at home because they understand that I just cant do the things that i used to. My family dont have a clue! my mum constantly tries to downsize my pain, telling me to wise up and hits me in the stomach telling me its not that bad. She constantly calls me a drama queen and has now grown to think she is a specialist doctor, telling me that "id be better off without all that medication" apparently id feel like new if i wasn't putting all those rubbish hormones into my body!! My Boyfriend has always been the one person who would give me sympathy and love when I was feeling bad, but lately I feel like im annoying him even mentioning my endo, I dont know if it is all in my head or not. Lately he looked at a photo of me and said " I loved you in that photo, you look so healthy" .... is it just me or would that upset anyone else? I feel like my happiness levels are at an all time low!
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