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Post by candice on Aug 21, 2006 12:00:51 GMT -5
I'm in the process of being diagnosed with endo so I'm spending a lot of time explaining it to close family, such as my mom and husband. My mom annoys the heck out of me with her possitivity. Everything I say she trys to turn around. She's all about "fixing it". "When you get your lap it will be fixed so don't worry" and so on. She has a million. My husband looks forward to the day I enjoy and want sex. Why? I never will. I keep trying to tell them that this is not a get better thing. I can make it tolerable, but I can't fix it. Why wont they listen? They make me feel bad for being realistic. Grrrrrr!
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Post by erzulie on Aug 21, 2006 17:49:24 GMT -5
I felt the same way when I first got diagnosed. Everyone thought there had to be some way to cure it, and I had to do a lot of explaining before they believed that it doesn't go away and there is no easy medical solution. Once they grasped that they were all like, "Wow. So what CAN you do?" That was when I actually started to feel more positive because I wanted to show everyone that, while there were no easy answers, I was going to figure something out that would help me to live with this disease and still lead a happy and productive life. I'm not really negative about it--though I must have sounded like that in the beginning--I just want to be realistic about the fact that it is going to be quite a struggle.
You have to put yourself in the other people's shoes before you start complaining too much though. What do you do whenever somebody gives you bad news? I usually do the same thing other people have done to me--I try to assure them that everything will be okay. You ahve to understand how devastating it will be to your mother especially to learn that you can't be cured! What would you want to believe if it was your child who had just been diagnosed with a disease you knew very little about? I think my experience has taught me that sometimes you just have to let people feel like the world is ending for a bit, but I try to remember that not everyone has had an experience that has taught them that.
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Post by candice on Aug 21, 2006 18:50:37 GMT -5
Thank you. I guess I was just feeling a little overly sorry for myself. I needed to hear that.
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Post by denna on Sept 3, 2006 23:55:21 GMT -5
hi Candice,
i have experienced that too...feel upset. not i only talk about it to some people.some i just don't tell. there's no point telling to everybody except to those you are accountable to like your boss. it will take times but after sometime, you will betetr. i was like that until i dound this forum. it helps a lot! thanks to the wonderful moderators
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Post by Hillary on Sept 8, 2006 20:59:11 GMT -5
I understand where you are coming from, when I was first diagnosed everyone kept saying to me you are going to be fine, once you have surgery and it will be all gone, so I would try to tell them that I have a high chance of getting back and my husband and his family kept telling me that it wouldn't and I use to get so fustrated cause I am thinking the reality of it and they really didn't want to believe that. But once I had that second surgery they understood what I was talking about and now ask me how I am doing instead of thinking that I am fine.
I think it all comes down to accepting this and going forward from here. Since I started here is has definalty made me not feel as sorry for myself and really deal with it. I can talk about it without crying everytime.
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Post by sandcastle on Sept 22, 2006 9:07:59 GMT -5
My mom is like that sometimes. I'll be telling her about something I'm upset about and she'll say "Well, tomorrow's a new day!" or something weird like that. She doesn't understand that it's really invalidating for me to hear that. I don't want to solve anything, of course I know it will get better. It's just nice to be able to vent, and have someone say "Yeah that sucks."
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