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Post by cherry on Apr 14, 2007 1:54:06 GMT -5
Hi, thought I would ask about this cos I know I went through a massive change when I was diagnosed, and it seems you find out who really is one your side when endo rears it's head. What has been the ultimate reaction of your loved ones around you, to the initial diagnosis and the symptoms and treatments which again have their own side effects? Have you lost anyone because of this, or realised what a valuable bond you have with some people? I will post my own answers soon, I don't think I'm alone in having a massive upheaval through all this xx
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Post by angelas on Apr 14, 2007 9:01:31 GMT -5
what a great topic! Thanks Cherry!!
I am still dealing with the reactions and I was diagnosed 8 years ago. Mostly with my family. Not sure if I ever mentioned this on here, but I don't have a mom, so talking to my dad about it has been very very difficult. Not to mention, his girlfriend is the head nurse at a nearby hospital, so her opinions seem to be what he listens to most. She treats it like its no big deal and there are a lot of women who suffer from it. Since she sees so much worse on a daily basis, she thinks I'm a big suck, and that I use the endo for an excuse for a lot of things, such as having surgery and getting all the attention. Long story short, I try not to discuss anything with my dad when she's around, and I offer to give my dad the most information I can in regards to it all.... Since he's not conviced that its serious he's not even going to be around when I go in for surgery next week - he's going to the cottage. He thinks that my description of pain is over exaggerated, and that I should just take some advil and suck it up. That has by far been my hardest experience in dealing with people. I haven't lost anyone in particular because of it, but I have lost jobs. The friends I have, have been there for years, even before I found out, one in particular, who still makes a point to ask me how I'm feeling on a daily basis, even though she knows my answer. I try to stick with her and the other positives in my life, and disregard the igorance since it would only bring me down more.
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Post by karen80222 on Apr 14, 2007 10:13:51 GMT -5
Yes -- great topic!!!!!
That makes me so sad you guys have been treated that way....I know it sucks!
When I was first diagnosed, I was married (only lasted about a year -- BAD idea!) Anyway -- my husband totally thought I was making up the pain to get attention, etc. And -- his attitude spread to a lot of my friends! Only 2 of my friends with endo or other pelvic issues totally understood. The rest would ask how I was feeling then you could tell they weren't even listening.
When I went for my first lap -- where I was diagnosed -- my husband went with me -- of course, this was a HUGE sacrifice cus there was a play-off game on! GRRR! When I was getting settled into the surgery & the nurse came in to check my IV, she asked how I was doing & if I needed anything. He answered "No -- she's fine, unless you have another ailment that she might glom onto for attention!" The nurse looked at me like I was some sort of faker or something. It was horrible. Then when the dr explained the diagnosis, I even had my husband go talk to the dr privately so the dr could explain to him that pain was real, etc. I don't know what was said, but the dr suggested support groups to me since "I wasn't getting any support at home". Since then I left the stupid husband -- hooray me!
I don't even mention it to most people -- and just try & deal with the pain without anyone knowing. My current bf is awesome. He thinks nature is so cruel to women for all the suffering we endure -- even without endo!!! He is awesome & I'm so lucky!
Funny thing -- one of my friends who thought I was just trying to get attention has been diagnosed with PID and PCOS and has contacted me to complain & ask about pain, etc. The nerve!!!!! Oh -- and she said -- well, this is real and much more painful than endo -- yeah, whatever. Needless to say -- I won't even answer her. I don't need negative people in my life. There's a million reasons why they are negative -- but I'm not going to let anyone else make me feel bad! I'm am so done with that! I wouldn't let one of my friends cause me bodily harm to make themselves feel better -- so I'm not going to let them cause me emotional harm! I think that's almost like giving them some sort of power over me, and I'm not going to let that happen!!! One thing I keep telling myself is that sooner or later EVERYONE on this earth is going to have to deal with pain and/or a difficult diagnosis and what comes around goes around. Most of us are young & it's hard for others to understand our pain. But when they get older & start going through pain, maybe they will think back on how ugly they treated us. And I hope that I have the strength to support them. I'm still working on that one -- obviously!
Bottom line -- hang in there and don't let everyone else's negativity hurt you! I think maybe a lot of us can use this forum cus we have no one else. I am SO glad that I found this spot and can tell you the short time I've been here has been one of the best times for me! I don't feel half as alone & feel so much better about my diagnosis!!!!! Thank you all SO much!!!!!!
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Post by JackMcFarland on Apr 14, 2007 13:48:05 GMT -5
Basically, my mom thinks this disease is about her. Period.
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Post by ouchy on Apr 14, 2007 13:50:05 GMT -5
My mom thinks it is "all in my head," despite surgery photos!
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Post by JackMcFarland on Apr 14, 2007 14:04:42 GMT -5
My mother is the total opposite. If I say I'm in pain she'll just shake her head and say, "What am I going to do?" Heh. What is SHE going to do?? Rightttttt. Even when we fight, my dad will talk to me and say, "Your mother is so hurt by this!"
Cause I honestly care how hurt she is? HULLO!
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Post by ouchy on Apr 14, 2007 14:12:31 GMT -5
My mom likes to take credit for good things (like if my brothers or i got good grades...."Look what I did! Pat on the back, mama!"), but when it comes to bad things that happen to someone else (like endo), she thinks the person is a hypochondriac--like she's not a REAL one herself! If it is something bad that happens to her, she plays the poor little old me routine.
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Post by JackMcFarland on Apr 14, 2007 16:37:34 GMT -5
My mom is the queen of guilt trips. She's also the most selfish person I've ever met. Our relationship is always up and down - it's very unstable. Sorta sad actually.
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Post by sammi79 on Apr 14, 2007 21:15:46 GMT -5
What a great topic!! It is really only recently that I have talked about endo to many people. I had to talk to my old boss because I had to take leave to have surgery shortly after I started a new job - She was very understanding and supportive.
To be honest at first I didn't get a lot of understanding from my hubby-to-be. Howvever I soon realised that I was not really sharing with him everything that was going on for me with the diagnosis. He was always supportive, but I just felt that he had no clue and he kept on saying the wrong thing. eventually I wised up and had a big heart to heart with him about everything, my feelings, my fears about not being able to give him a baby, the pain etc. I also gave him all this information about endo. It really helped and now he really does give me all the understanding and support that I need.
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Post by kb on Apr 15, 2007 0:10:48 GMT -5
Most people have been very understanding, my sisters provide the least support, one seemingly not to believe its anything (although i think she is starting to understand now) and the other while believing me seems to think my attitude wrong and criticises me for not just taking the pain relief and carrying on, not that simple unfortunately.
My parents are wonderful and supportive but unfortunately take the stance that i should just have children which isnt helpful.
My husband is brilliant, understands completely, occasionally forgets, and if im criticised for anything by him its for hiding how bad i am. Weve been together 9yrs round about, so he's been there right through from the time i was first diagnosed. He does everything for me, i dont know how i would have gotten this far without him.
My parents in law are fantastic, do so much for both me and hubby, have helped with money, housework, gardening, meals, and regularly check up on me. Though i know how much they want a grandchild im never hassled by them. The amazing thing is about them is my mother in law is sick as well but is still so supportive (and she buys me clothes, i can never get out and shop).
My friends have been wonderful too, although most dont really understand no one criticises and all show genuine concern, have lost a bit of contact with some but they werent close anyway. Some it has brought me closer too, i have one friend i can tell anything to and is my most valuable listening ear, and another who is like a brother and is incredibly protective. I am very lucky with my friends.
My boss is wonderful about it, i have always been very honest and open with her about my health and she is very supportive. I dont really think people at work truly grasp whats going on, and on occasion have had to remind them of my limitations, when i was still working i would have to be firm, i did community nursing and they always wanted to add just one more and would often roster too many. Would occasionally send an email apologising i cant do more and requesting not to be pushed adding a thankyou for their support, it would keep them in check.
So really ive had very good reactions, and if it wasnt for my excellent support network things would be alot worse.
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Post by chloelouise on Apr 16, 2007 6:57:25 GMT -5
What a great post idea cherry!
I have had very mixed reactions, My sister think I should just "grin and bare it" (now I have never hit anyone in the life my I could of happily punched her when she said that!)
It took my mum and dad a long time to talk to me about it, my mum too suffered with endo before she had a full hysterectomy straight after I was born. They are very suffortive now although do want me to go and live at home again which I find frustrating. It can become a battle of whos whos when that conversation crops up, its like Im a little kid again. It took a long time for my mum is take me seriously and talk to me but now that door is open she;s much easier to talk too.
My partner has been my rock, my shoulder to cry on, my hero!! I couldnt have asked for better or more loving support.
I have lost all of my friends since getting endo, I am never well enough to go out and I guess you really do discover who your friends are! I miss them awfully but every time I invite them over no one ever comes, I once organised an Ann Summers party at my house (I do Ann summers parties when I well enough) and not one turned up apart form my sister and her friend. They didnt even bother to ring to say why they werent coming just didnt show up. Needless to say that made me feel like cr*p.
I think people react to endo in very differant ways, some people can be very hurtful about it (and I encountered quite a few of them!!) but there are also people out there who will offer support and genereally care.
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Post by irishmuse on Apr 19, 2007 22:25:46 GMT -5
I'm very lucky to have very supportive parents, "in laws", boyfriend, friends, sisters, etc. My mom had endo, and I believe many of my aunts and my grandma had it, even if they were never diagnosed (it was the years of "suck it up, you're a woman" when they suffered). She feels responsible, but she also has severe anxiety and guilt issues to do with many things, so that's just tacked on. My man is WONDERFUL! He even researches about it on the 'net, talks to his mom (who is a nurse) about it, comes with me to appointments, helps me monetarily while I'm off work (without any complaint at all), talks to my parents about it, and tells me to just relax when I'm in pain. My parents are paying for my Mirena because I can't afford it, and the Trillium drug plan doesn't cover the cost (which is retarded, but don't get me started on that). They have also helped me out with groceries, other drugs, etc. My "in laws" are GREAT! My MIL even suggested to get a hysterectomy (which I actually want some day), and is worried about my health, which is a huge switch from any ex's parents. She also makes sure my man is "in line" with helping me out...LOL. I consider myself VERY lucky. I had 2 friends who did not understand my pain at all, and my decision to not have children due to the endo and pain I live with everyday (I feel I would not be able to give a child the mothering they deserve--trust me, I know what that's like...my own mother was disabled through much of my life due to hip deterioration, and you miss out on TONS of "normal" stuff when Mom can't walk). Luckily, I am no longer friends with these people (they also had no sympathy for two other friends who have Fibro and arthritis). I thank the Gods every day that I have the family and friends that I have. *sniff sniff*
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nic
New Member
Posts: 8
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Post by nic on Apr 24, 2007 5:12:45 GMT -5
Wow, what a great topic. i just read all of your posts and i can understand totally. It goes to show just how many parts of our lives it affects and how the pain is just as much emotional as it is physical. For me, i'll start with the bad...my workmates don't understand at all. For them, i could explain until i'm blue in the face about what endo is and how it affects someone...and unless i came into work with my head cut off or my arm where my leg should be...it wouldn't be enough. If they can't see it "it doesn't exist" and i'm just staying at home watching daytime tele. So, i've accepted that and realised that i'm not here to correct their ignorance. My ex-boyfriend of 8 years who had seen me go through serious pain, month after month was the first person i called to say "my specialist is finally doing the lap to diagnose endo. I asked him if he would come with me to the hospital on the day of the surgery. His words "Umm, i'll have to see what work i have on that day". Thanks very much!!! I don't think any normal person would say that to someone they supposedly care about. Extremely crushing...but yes we were not together for much longer after that. My friends are ok about it, although i don't think they understand too much about how much it affects you. They were good after i had my lap though....they all came to visit me. Now the good part - My mother has been my mountain (never mind rock). She has been there with me through it all. Holding my hand every step of the way. She was there the whole day of my surgery and was there for every second of my recovery afterwards. I had a few complications in my surgery (which i think is for another thread). I've been blessed with my mum and i know that everyday of my life.
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Post by irishmuse on Apr 24, 2007 7:52:32 GMT -5
I understand the co-workers thing completely!
My bosses at work said to me "Well, Tina (the big boss) has Endo, and isn't that bad". I tried to explain that some people have worse pain than others when it comes to Endo, but they just wouldn't listen.
And my coworkers would be PISSED when I took time off work because I was in too much pain to get to work, and would compare whatever piddly illness they had to my pain ("Oh, well, I have the flu").
Argh!
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Post by sequin on Jun 14, 2007 20:04:02 GMT -5
How has everyone gone about telling family, friends, and acquaintances/coworkers about your endometriosis?
Two of my sisters know, but I have yet to tell my mom and stepdad, my dad, and one sister. I don't expect to get much support from any of them (which is why I haven't told them) but I do want to let them know that I'm having a laparoscopy at the end of the month. I'm just not sure what the best approach is.
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