Even the people closest to us just don't get it!

Discussion in 'Fibromyalgia Main Forum' started by doggymommy, Oct 15, 2008.

  1. doggymommy

    doggymommy New Member

    I just had quite a "talk" with my boyfriend. I was bawling my eyes out in frustration and fear of this stupid illness... and he gets so frustrated at me when I talk about it. So I thought I'd try Once Again to help him understand what it's like. I asked him what he would do if he woke up tomorrow morning and couldn't get out of bed. He thought for a second... and said "call in sick"... I was quite sure he knew what I meant so I didn't say anything... I assumed he was kidding. Then he said to me "I've delt with something worse, not Wanting to get out of bed." I was in complete shock. He has seen me have to quit my job, quit school, cry my eyes out about both of these, watched me lay like a vegetable in bed not even able to hold a conversation... So I calmly said ..."umm... worse?" And he was quiet. Then he asked if I'd ever thought about killing myself... and he said he'd been at a point in his life where he had come close to that. Which is AWFUL of course... so I said "that must feel terrible". Then I asked why he brought that up. By this time he is sounding Very Annoyed and just said he's sorry he brought it up and could he please just go to sleep. I said no. Which of course made him more annoyed. Now I'm not saying depression isn't as real and as serious as cfs... but why bring that up?? Is it a competition?? The only thing I can think of is that he must just have been frustrated and tired and just trying to say something hurtful.

    ANYWAY my point is... How do we cope with the people in our lives who don't want to admit there is something wrong? When they get so angry just talking about it that we can't even talk to them about it? I'm SO angry at him right now I could spit... which makes me feel guilty because it's not his fault I'm sick and I don't want to sound like other people don't have problems too. But it's like he doesn't even want to understand what I'm going through... like he's just going to pretend I'm fine. I know it's VERY hard on him too... but does that mean I can't be upset about being sick? I'm sorry if this doesn't make any sense... I'm just hurt and sad and upset and didn't know who else to talk to...

    Of course it's entirely possible that I'm super emotional from our talk and talking about being sick that I'm blowing the whole thing out of proportion.
  2. tofumama

    tofumama New Member

    I wish I had some advice for you...I have has similar conversations with my husband, very recently as a matter of fact. He is sick of hearing me talk of being sick...and my response is not as sick as I am of BEING sick!

    Nothing but support here, friend...
  3. Belinha

    Belinha New Member

    Have you tried for a second walking in his shoes? The people, Dr's, nurses, children, friends, and all of those so close to you, who under normal circumstances, are usually (at least I am)laughing, telling jokes, entertaining and being the life of the party? Well, in the beginning, you come on with a few flu symptoms and as usual he tries and mixes up a little TLC, and voila! You are right back to normal. But this is different, this keeps getting worse, for both of you for you, because you are terrified and have lost control over this DD and don't know what the next symptom is going to be. On his side your knight in shinning armour who always wants to rescue his damsel in distress, his hot babe, now can't even touch you because it hurts, and he feels helpless. Make a move, grab his hand, plant a kiss on him and ask if he thinks going to a Dr's apt. with you would help?

    By all means least but not last thank him, thank him, thank him, and ask if there's anything on your part that you can do to make him understand this better, don't forget you are also new at this and it's a learning experience for both of you. Lots of love and good wishes to both of you.

  4. 3gs

    3gs New Member

    Sometimes this can be the roughest part of this dd.
    I go thru this same thing. Ive tried to tell myself maybe(daughter) is scared and cant face it.

    Then I stopped saying anything to anybody but that made me angry because like you said aren't we allowed to talk about it?

    Its a big catch 22. It stinks in more ways than one. This board has been a huge help they let you vent answer questions and are there. true not the same as family but

    hang in there
  5. NewSky

    NewSky New Member

    Hi doggymommy

    I’m new here...and I’m sorry you’re going through this whole CFS-drama. I’ve got CFS/Fibro etc. I understand the frustration, and the fear.

    CFS is an extremely ‘upsetting-sickness’. Not just the symptoms but the fear of the unknown.

    We expect those close to us, to understand how we feel. I keep telling my husband how I’m feeling, and how it’s affecting me. But by his expression, you’d think I was asking him to suddenly start speaking French or Italian. When the only language he knows, is English.

    Remember the days of going to school...and work. You could get the flu (or other common illnesses) and feel awful. But, you could still function. You didn’t feel that it was going to affect your future. And you knew that it would pass, soon.

    CFS is so different to that. Being super emotional is understandable. I get that way sometimes. The thing we need most from those who are close to us...is compassion. And it seems to be the thing that is in short supply - for a lot of us with CFS - including me.

    It sounds like you’re boyfriend kind of understands what you’re going through. Yet, only to a certain point. That deeper understanding (which is compassion) you’ll find through other CFS people. I’m here for the same reason. Hoping to interact with others - who can relate to what I’m going through.

    Hope this all makes sense. Take care...NewSky
  6. doggymommy

    doggymommy New Member

    Thank you all so much for the support! I feel better this afternoon and hopefully by the time he comes home tonight I will be able to just let it go. It's still frustrating but I know it's not his fault. I think being on this forum more often is a good idea... because I put so much onto him because he is pretty much the only one I have... aside from my crazy mother (but that's a whole other story). I used to have friends but basically they were friends I would go swing dancing with... so... needless to say I don't hang out with them anymore.

    Anyone wanna be my friend? =)
  7. savvy50

    savvy50 New Member

    I know just how you feel because even though I have a loving husband and two grown daughters who care about me, I'm sure they don't understand what I'm going thru.
    It is a good thing to be a part of this forum because I think most of us share similar symptoms and we understand each other.
  8. WhoSaid

    WhoSaid New Member

    My DH recently had shingles and he was in some really bad pain. He was grumpy through it and I fully understood what he was going through.
    During some hot words over him being in pain I said imagine being in pain like that all the time.
    He got it for a while but the lesson has faded because he is fully recovered.
    At least he had a glimps of what I am going through. Just wish he would remember it because I can't forget it.
  9. dscheid

    dscheid New Member

    I understand exactly how you feel, after dealing with my husband's comments for the last 2 1/2 years. Those closest to us usually are the most uneducated about our conditions (you think it would be the opposite!). Do you remember how your Mom and Dad, grandma, grandpa used to tell you "others make fun of those they don't understand"...meaning it's the same attitude of a grade school child making inappropriate, hurtful comments about the kid with glasses, the kid who is overweight, the kid with braces, etc.. These bullies (most times) are acting out because they are hurting inside (maybe a bad home situation..siblings pick on them...or worse, the parents). The most accurate explanation for the behaviour is that they are just plain afraid of something they don't understand and think making fun of it will make it all go away. My advice would be for you and your boyfriend to go together to a support group or even to a counselor who can talk to you both about understanding each other's thoughts and beliefs regarding your illness. In my case, I had built up so much anger toward my husband because of his comments, I thought I would literally explode! My pain mgt. doctor recommends seeing a therapist (psychologist) at least once a month to talk. After just one session with my husband, our relationship is about 85 percent better. He confessed he was afraid that our children may be influenced by the fact I must take narcotic pain medication to function each day. If I didn't, I wouldn't be able to get out of bed. She then asked him if he and his parents drank alcohol in front of our children. He looked so surprised at that question. She explained that it would be much more likely (I certainly pray not!) that their seeing semi-habitual drinking would have a greater influence on them than knowing their Mom needed to take pain medication for an actual reason...not just for social or 'relaxtion' reasons. I never take it in front of them and am NEVER 'drunk' from it...just gladly able to drive them to sports, make dinner, etc.. Anyway, the 45 min. session ended with me asking him..."Do you trust me to know what's best for me and our family?". He said, "Yes, I do". That seemed to be the turning point. He doesn't make 'medication' comments anymore and asks me on bad days if he can get me some soup or a cup of tea. It's not perfect, and I still feel guilty for being sick (not my fault!)and the depression sometimes really hits me hard, but at least we now have an understanding of each other. I hope this helps...I'm sure you've asked him if he remembers how terrible he felt the last time he had the flu and all the body aches. Say..."Just imagine feeling that way 24/7........? I'll say a prayer he will become an understanding, supportive friend to you....you need it so much! The emotional hurt makes the physical so much worse! You shouldn't have to deal with both!

    Take care!

  10. akandmk

    akandmk New Member

    My husband shuts down when i talk about being sick. He does ask how i'm feeling and is totally there when i'm tired or in a flare. But after reading A patient ' expert walks you through everything you need to learn and do the first year by Claudia Craig Marek I try not to always make our conversations about my illness. People who love us don't like the fact that we are sick and sometimes it is easier if they don't talk about it. Communicate how you are feeling with him and also tell him that you both will set up boundaires and you'll talk about other things with him too. I don't have anyone else to share what i find or how i am feeling being that i live out in the country and being sick now it would be too hard to explain that i am sick to someone new. But i try to limit how much i talk about this with him now because i can see how much it hurts him with me just being in a flare and he feels helpless that he can't make it go away. Perhaps that is what is bothering your bf. Communicate with him and see what is really going on.
  11. Marta608

    Marta608 Member

    I know absolutely what you mean; my family and few remaining friends try. but they just don't get it. It took years before it occurred to me that "getting it", understanding, is impossible unless you're the patient and even then it's a confusing situation. We don't understand it ourselves!

    Oh, I know. Even though we wouldn't want them, things like MS or cancer get compassion from others while we may be as sick but are expected to keep going. Which is really what we want (aside from a cure); we want those we care about us to know we're doing the best we can.

    We feel guilty. After all, we can't prove our illness and many medical professionals believe it's all "in our head". No wonder we get frustrated and angry!

    I think what we need to do is be thankful for places like this board and for those who hang in there with us while we work our way though, day by day. Just think how much worse it would be without them!

    So thank you, all of you here who stand by me. I don't know what I'd do without you. Doggymommy, I hope this puts a slightly different slant on it for you.

  12. jenbooks13

    jenbooks13 New Member

    *is* just as bad--wanting to kill yourself. He was trying to tell you he'd been there and knew what it was like. But you inadvertantly minimized the comparison and the chance to really connect over it. If you'd drawn him out about that time maybe he would have opened up to you.

    The difference is...he's over it and you're not. You're still sick.

    I find myself sometimes getting annoyed with an older lady in the building who can go on endlessly about her troubles and ailments, or call me out of the blue with her "needs". I should "understand" having chronic lyme, but I get tired of it and she seems self centered.

    We probably do too.
  13. Bunchy

    Bunchy New Member

    with some very wise words.

    I think we can all help ourselves by trying to understand why unless someone has walked in your shoes, it can be hard (if not impossible) for them to accept and "get" our illnesses and also some people are just plain scared of illness.

    This thread has helped me personally understand a bit why people are the way they are with me - I have struggled with the same issues with my parents and in-laws.

    Hopefully others with these problems will see this and feel better.

    This board is the best!

    Love Bunchy x
  14. Rich333

    Rich333 New Member

    The problem we have in getting others to sympathize with our troubles is the simple fact that people don't remember how bad it really is to be sick. This is called "illness amnesia", or something similar to that.

    This is undoubtedly a survival mechanism. We selectively forget the bad things in life, like the pain of injury or the misery of being nauseous all day with the flu; so we can go forward with confidence and optimism. Try to remember how it felt when you were a child and had the measles. How did it feel? You can't, really, because we are not supposed to.

    The antelope forgets seeing his cousin killed by lions in the night, so he can feed and mate and live an antelope's life. If he did not forget most of that, he would be so afraid, he would be paralyzed with fear. He remembers just enough to be careful.

    My sister does not support me in my illness despite being a retired nurse. People form blocks in their minds about these things, they live in denial. I guess that just works better for them.