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Post by JC on Jan 11, 2011 6:51:53 GMT -5
I caught wind of this website and thought it was appropriate to share with us here! www.ButYouDontLookSick.comIt's a website dedicated to help everyone with a chronic illness or invisible disability to be able to live a full and happy life. It's pretty awesome. They have a lot of stuff to read along with a "question of the day." I think I'll hijack their question of the day and we can chat about them here if you all want to! They also have a forum Please don't leave us, I'll be so sad!
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Post by JC on Jan 11, 2011 6:57:01 GMT -5
Question of the day: Let's talk relationships! Has your marriage/ dating/ friendships, etc suffered or changed because of your illness? If so how? How have you dealt with it? I just read that they say 83% of marriages with one of the partners having a chronic illness end in divorce. That is a very high number. Have you found this to be true in your life? thoughts? vents? Share.
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Post by Shannon Elizabeth on Jan 11, 2011 11:27:11 GMT -5
This is exactly what I talked about when I visited my doctor on Friday. He said, "Well people say that 'you don't look sick' but yeaaaa, you are." And it felt so good to have someone admit it! He said my body is so tense and has so much stress in it that its like I'm a major fitness trainer and have been doing extreme workout sessions. Only thing is, I don't do nothing. So he says, you take the stress of what your body is already dealing with inside from your illness, and then you take the stress coming from the outside from all the people who don't understand and the people who tell you there's nothing that looks wrong so it all must be in your head, and your body becomes one giant knot! He said its pointless even to readjust me because I'll just go right back out. And true to his words, he did adjust me and by that night I was already full of kinks again. *sighs* So this is an extremely valid point.
And Jenaya, to answer your question of the day, I most certainly would say yes, my relationships have DRAMATICALLY changed since dealing with all this. I've lost several best friends, I have no social life, even moments with my parents are extremely strained because they just can't understand! And I know its not fair to take out my anger on them, because they don't know what I'm feeling, so how can they truly understand? But it gets so hard and becomes so frustrating when the people you need most to help you get through all this, begin to pull away from you because they don't understand, or simply don't believe what you're saying. Sometimes my friends even think I don't do things with them because I don't want to be with them! And that's the farthest thing from the truth...I sit at home and cry because I CAN'T be with them. *Sighs* Sorry...you can tell this is a pretty sore spot with me right now.
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Post by JC on Jan 11, 2011 12:03:29 GMT -5
Girl I hear you. It's a very sore spot with me right now too. Endo gave me a LOT of problems with my husband. And he's just not a very understanding person AT ALL. And now that I have other medical problems he's just even worse. He can't SEE what's wrong with me so he doesn't know how to react. I have asked him many times if he thinks I make this stuff up or does he secretly think I'm attention seeking and he says no. But some part of me just can't believe him just based on how he has absolutely no reaction to me being sick. In fact, he actually seems to get mad at me at times. It just makes no sense. I would really love some more support. I would kill for a hug when I feel sick. GOD that would be wonderful! Just a hug! That's all I want!
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Post by Shannon Elizabeth on Jan 11, 2011 13:06:13 GMT -5
I totally know what you mean...sometimes I get this look like "Now what's wrong with you"? As if I'm just making something new up everyday to get sympathy or something. I don't know. But you're right. Just a simple understanding gesture would go a really long way. And we understand that they're frustrated because we're frustrated too! But getting mad isn't going to help or solve anything. And that isn't rocket science. That's the truth when it comes to dealing with anything. Sometimes I wish I just had a big ol boil on my butt or something so when someone isn't getting it I can be like "See!"
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Post by hellsbells on Jan 11, 2011 14:17:53 GMT -5
I have some friends who've been great, some not so great. Even my mum once said 'I don't really need to hear about all this' just after I was diagnosed and I was trying to tell her about stuff I'd researched, and asked her to flick through my endo book. It hurt like hell at the time, but over the last year she's seen my health deteriorate even more, and finally seems to get it. Now I'm on the up she's noticed changes straight away and I think she's very relieved! She's been great this past year. Still hasn't read the book though!
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Post by JC on Jan 11, 2011 14:50:14 GMT -5
See I ask my husband to read things too because I feel like he would understand me better and not act like I'm faking this sh*t. And I got the same response as you Helen! Why don't they care? If it were him being sick I would be all over the place trying to help him! Why is it that I have to get severe before he'll care? I have great friends, and my family is wonderful. Too bad they are all almost 3000 miles away. It's just my husband that just is soo damn unsupportive and he's all I have here. All I want is a damn hug when I feel bad. Is that so much to ask? And when he starts acting like a jerk not caring, then I start to whip out the information/books/internet searches to help him understand and all it does is make it worse!
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Post by hellsbells on Jan 11, 2011 15:27:52 GMT -5
I think my mum was a bit overwhelmed and a little scared. I also think she may have felt some could have been down to her, as she'd been unwell when I was conceived and she knows that a person's health can be influenced by the parents' health at the time of conception. I dunno, I just have to accept that she's not as engrossed in the detail as I am. Jenaya, have you asked him why he shoes so little interest? He might be a little scared of 'womens' things like this. Doesn't account for the new stuff I guess. I hope you get through to him soon x
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Post by JC on Jan 11, 2011 15:38:09 GMT -5
God I've asked him until I'm blue in the face. Even the marriage counselor has asked him. He just says he doesn't know how he feels and then gives a blank stare. I'm so tired of it! Where is he in that mind of his?
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Post by hellsbells on Jan 11, 2011 15:44:12 GMT -5
Scared? Confused? Bewildered? Not that I'm making excuses though, he needs to step up and support you more.
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Post by JC on Jan 11, 2011 15:46:22 GMT -5
I'm beginning to think he just doesn't know how to be compassionate. So does that mean he can learn? We have another session tonight and I think I want to make a rule. Every time I complain about how I feel physically he is to hug me. Maybe it'll become spontaneous one day instead of forced. The only thing I'm afriad of is that it'll be so cold and empty when he hugs me that I'll just be left feeling worse. UGH sometimes I just want to give up. Even my cat is better at comforting me.
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Post by hellsbells on Jan 11, 2011 16:06:15 GMT -5
In the meantime, until he cops on, you've got us for virtual hugs! Good luck x
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Post by gemstone on Jan 11, 2011 16:14:57 GMT -5
Definitely - hugs from me!! I'm all warm in bed with a heating pad, so they're extra cwtchy!! BTW, I am currently browsing this site - it's really cool
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Post by katiev on Jan 11, 2011 19:35:03 GMT -5
Endo has changed my relationships big time. I have lost friends for sure. My hubby has been fantastic but I can't help thinking "this isn't what he wanted to marry". I can't snowboard or mountain bike with him anymore. Sitting on a bike seat hurts my endo like nobody's business. Go out for dinner? Ya right...do they have cushioned seats then sure otherwise forget about it. Some days I feel trapped at home but what is the alternative? On bad days I can't even be a passenger in a car, feed myself or barely breath. Sex life....ugh...don't even ask. I just feel sorry for my husband that he married a dud. That being said though...in the past month, since being on the endo diet, I have been active and slowing making my way back to the land od the living.
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Post by Karen on Jan 11, 2011 19:53:52 GMT -5
(Shannon, talking about your entire body being in an entire knot - pelvic PT can SERIOUSLY help with that!)
Ah, yes, lovely endo has caused me to reconsider some friendships because it looked like I was a lazy friend, even though I made sure to tell my friends I was backing out because I felt awful, but one friendship in particular never recovered. And I can sympathize with those of you that don't have support from your partner or worry that your partner might leave, but I'm on the other side of things... Some days I wonder who the hell will want me with all my baggage? It's hard get all snuggly and happy with someone but still have the 'what if he'll reject me when he learns' in the back of my head...
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