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Post by vweiss824 on Oct 3, 2013 0:23:54 GMT -5
I have a great support group of friends and family...but it gets so frustrating when people ask how you're doing, making you feel like a constant Debbie Downer, and I know they care about me but they don't want to hear about it. It seems like eventually they run out of understanding when you have to cancel plans at the last minute because one of the nasty side effects of endo or if you go out and have to leave early because of the same. I also feel like sometimes my boyfriend seems apathetic to my pain because he's so used to seeing me in pain, trips to ER, doctors etc..Then those times when you have to pretend everything is peachy because they can't handle seeing you incapacitated..Sometimes it's easier to just suffer in silence and keep up the pretense that everything it fine, when all you want to do is have a meltdown. Does anyone else feel this way or have you gone through this and possibly have suggestions or advice
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Post by omaklackey on Oct 3, 2013 13:26:35 GMT -5
oh, yes, and we have had this discussion here on the board many times. The thing I try to remember is: 1. is this a really close friend who actually wants to hear the answer of how you are doing? This disease has a way of weeding out aquaintances vs. friends. 2. Before they asked you the question were you completly NOT thinking about how bad you were feeling. If so answer honestly and say. "I'm fine." BUT if you were just going through a spasm of sheer torture and then also answer honest. They don't necessarily need the nitty gritty details unless they are a VERY good friend that will support you. (again this disease has a habit of showing who your true friends are). 3,If they an aquintance gets past the "I'm fine" but seems to want more, I tend to give them vague details of the disease in general (not necessarily my specifics) so they are educated. The thing I see is that they will continue to not understand what we are going through if we don't give them information. I'm all about educating. When I was in the hospital I ended up with two Aides in my room and both were people I had worked with so I told them about Endo. Its hard to educate when you feel like crap but if we don't how else are they supposed to know? My husband finally started to come around a lot, when after quite a LOT of education he started looking into it himeself. You know you have won the battle when they do research on their own. My GP who helped me get into a specialist was the same way. Fought her tooth and nail until she finally looked into it herself. Then she got me a refereal to someone who could help. Its so frustrating having to educate and tell people how it works but if we don't how are they to understand!!? Use the board to vent your frustration and cry when needed (I do that a lot). I'm sorry your feeling frustrated with all this. Its the most frustrating disease to deal with. I sometimes finding myself wishing I could trade it for something people would understand. I"m kind of ramibling this morning so hopefully that was helpful.
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Post by Karen on Oct 3, 2013 17:45:27 GMT -5
Yup, totally get it! I've lost friends, had relationships end because I was a dud most of the time, and even second-guessed my family's support at times. Very frustrating.
One thing that I've learned (and it's so obvious now that I know!) is that women tend to vent. Get it all there, spew the details, share everything. That's how we get things off of our minds and relate to each other. I found that going to a therapist allowed me to do that, get it out there, and feel listened. But, it spared me from sharing all the nitty-gritty details with my friends. They still get an overview of how I'm doing, progress I've made, etc., but I don't feel like I need to give them the play-by-play as much as I used to. I found that actually helped some of my friendships AND it also makes it so that we have time to talk about other things, things that are going on with them, etc. This board has been a great place to vent and get it out of my system.
Men on the other hand, when they hear us vent, what do they want to do? Solve it! So if they give their 'suggestions' (ha!) and we don't listen (or duh, they don't work), they tend to feel helpless. And we all know that men can be big babies if they feel helpless. It may be worth having a discussion with your partner and saying, "Hey, I feel like crap right now. I really need to be heard. I don't need you to solve this for me, I just need you to be here for me and let me unload. It would really mean a lot to me to have your ear so I can get this out of my system." It's hard for partners to know what to do, so tell him if you can!
This disease is invisible on the outside so it's really hard for people to get it. If you don't look sick, then it must all be in your head, right? I know that's how I used to feel. Obviously, I've totally changed that mentality, but it's not as easy for someone else that hasn't been through it.
Hang in there!
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Emily
Full Member
Posts: 148
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Post by Emily on Oct 3, 2013 18:28:11 GMT -5
This is something that really all brings us together. I am fortunate in that I have not lost anyone due to the disease (it has only been a year for me) but it has definitely put a strain on friendships and my relationship. I have gotten to be very open about the disease with my best girl friends, so they understand it I cancel on them because I am curled up in bed. Some of my not-so-close friends thought that I was blowing them off at first because I did not want to get too graphic with them. Eventually I gave a few of them a 2 minute endo crash course. They are much more sympathetic. For my family, they are pretty understanding. My mom sends me a text almost every day asking how I am. I have 4 sisters, and they are all good about it as well. My dad took a bit to come around, but I actually sent him a personal testimony I had written to send to the CEC in Atlanta and he checks in on me all of the time now. My boyfriend and I have been together for almost 3 years, and we have hit some rough patches because of my health. He is a great guy, but has a hard time understanding "female issues". Several times it has taken seeing me in an absolute emotional/physical breakdown for him to really see what endo does not only to my body, but my brain when I am going through a new treatment option. Our sex life really dropped off a little over a year ago when I started really having problems, and while he has never complained once about it, I can't help but to feel guilty at times. Our big turning point was when I admitted that sometimes I only have sex with him because I want him to be happy and not be deprived, that I hid my pain so that he could enjoy it. He broke down in tears (very rare) and told me that if it hurts me, he will do without. Since then, he has offered to go to every appointment and has even found some of his family members with endo for me to talk to. If I want to stay home and watch Netflix in bed on a Saturday night, he doesn't give me a hard time and offers to bring me dinner. He does, however, still ask me if my stomach hurts (I guess less gross than "How's your uterus/ovaries/bladder/bowel?") Always makes me laugh! Honesty is really best. Any guy worth your time will understand, as long as you are honest and educate him.
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Deleted
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Post by Deleted on Oct 3, 2013 18:51:13 GMT -5
I totally get this and was wondering if other women felt the same. My mom tells me I'm a hypochondriac. I think she believes I use my pain and my frequent migraines as an excuse to not visit her. My husband, over the weekend, actually told me I was obsessing over my pain and claimed that if I would just stop thinking about it, it would go away. Sadly, I'm scheduled to have my lap tomorrow and right now I feel no support.
I agree that this since this disease is not apparent on the outside, most people just don't understand. It is awesome to have this forum as a resource to turn to when you just need a little understanding. I think you have all protected my sanity with your advice and stories and insight. Thanks!
Sent from my SAMSUNG-SGH-I727 using proboards
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Post by omaklackey on Oct 3, 2013 19:14:42 GMT -5
Rachelj, that comment about "obsession" is kind of a tricky one. We can make our pain much worse by constantly thinking about it and "obsessing". I do that to myself! I will be fine and some comment causes me to go introspective. I can absolutely make myself worse. I'm in NO WAY saying that our pain is in our head but that by being constatnly aware of it, we can make it worse. It was a comment made by my hubby that I was "obsessing" that made me reevluate my whole outlook on life. I went back to school, I found other things to focus on. Sometimes if I find myself getting over abosrbed in the endo I take a little break from posting here for a few weeks until I can get back to my zen self. It takes a lot of work to keep yourself from becoming to much "endo" and not enough "me". Especially if your having a super rough flare, or like myself currently unemployed (just graduated and then had surgery) and not having enough to keep me distracted!
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