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Help in Understanding
14 Replies
lisa1 - October 3

I am knew to this forum. I stumbled on it by accident and am glad I did. I too went through a battery of tests including a cardiac cath, endoscope and a hosts of others before the doctor's conclusion that I have this horrible illness. A year ago, I was healthy, active and full of life. Today it was a strugle to get out of bed. As all of you know, most days are just that, a strugle. Even after all of the testing I have done, the little voice inside of me was saying there is something else wrong...then I found you all and I can't believe there are so many exaclty like me..feeling the exact same way.
I guess my issue is with making my spouse understand how hard this illness is. When several of the tests came back negative, he has now decided there is "nothing wrong with me". Any ideas beside counseling, (refused) talking to me doctor (refused) to make him understand there is indeed something wrong with me!!
My thanks to all of you for this forum. I have you all in my thoughts and prayers

 

Robin1237 - October 4

Try Lyme disease, a bacterial infection that wrecks havoc with any part of us, including the heart, gut, etc. We usually get it from being bitten by an infected tick. Unless we get Lyme tests, the tests show up normal. Even Lyme tests don't always show it and it's a clinical diagnosis, as in matching the many symptoms of Lyme. Go check out www.lymenet.org/FlashDiscussion/MedicalQuestions. Have your spouse take a look at the lymenet discussion too.

 

megh - October 4

He might be in denial that your sick. My husband refuses to read anything about it because he wants to think of his wife as being well. Although he is very supportive of me. He can see I am sick no need to convince him.

 

lisa1 - October 6

hello megh, Thanks for the advise. I guess I have to try to convince him I am not a hypocondriac and I do hurt. It is really weird, because in any other apect of our life he could not be a more supportive and kind spouse. You might be right. he just doesn't want to see me suffer so he refuses to see it. Thanks again

 

Connie - October 6

I lived this with my first husband. The marriage lasted 25 years. It was a very bad place to be, in pain, and without support from the one person who should be on my side no matter what. Now I understand that a healthy marriage is one in which each person wants their partner to be happy and feel safe. I realized that I didn't deserve to be unhappy and alone within a marriage. My second husband met and fell in love with me. Fibromyalgia and dibilitating osteo arthritis are part of me and he accepted them as a package deal. Through his support I have learned to live a full life in spite of the pain and fatigue. Please consider a simple, non judgemental, calm sharing time between you and your husband. I urge you to build a healthy marriage, one tiny step at a time. It is surprising how many spouses react out of feelings of fear. Many, especially men in our society, feel that they carry the weight of being 100% responsible for the family unit. It is overwhelming to say the least. Fear can often bring denial.You know, if we don't allow the thought of "it", then "it" can't hurt us?Fibromyalgia usually continues for a lifetime. Even if it is Lyme disease or something curable as some have written, everyone deserves a supportive and understanding marriage partner.I'm not advocating divorce, please don't think that. But I do know how a good relationship works. I didn't have the tools to build one before. I've learned to listen. I used to think of what I was going to say while my partner talked. I reacted instead on interacted. That's just me. Maybe my mistakes will help someone out there.

 

sunglo - October 7

lisa, i was jus aboout begging for some deases that actually would show my pain to others!...we know how badly we hurt ...the strugle to funtion normally....it jus hard to expain to anyone..as my Mother said..."i dont know how you live with this pain day to day"..and u know i dont either ecept to take meds to get thru so hang in there we understand

 

TNUtammy - October 7

Lisa, I may not be married but I've been in a similar situation, just not nearly to the degree that you're dealing with since this is your marriage. I still feel that experiences outside of marriage or romance can help you to understand people and their reactions, so maybe my story will help you. When I was first diagnosed with chronic fatigue syndrome in high school, a lot of my friends seemed supportive and understanding at first. Then as time went on and there were no visible signs that something was wrong with me, most of them decided that I was either a hypochondriac or labelled me as "the complainer". I'll admit, I made it a lot worse by trying so hard to help them understand and describing my symptoms in detail so that they would know something was wrong with me even though they couldn't see it. All this did was push them away, so my advice is to let your husband deal with it in his own way and in his time. Tell him that if he ever has any questions about it then you would be more than happy to answer him, but don't force it or press the issue too frequently. It's hard for people who care about you to accept that you have a chronic condition and that they can do absolutely nothing to fix it. This is actually the reaction that my boyfriend of almost 2 years had when we first started dating. I found that he was genuinely concerned, but afraid to say anything about it because it really does hurt him to see me hurt. I spent the first year of our relationship just waiting for the day when he would realize that I wasn't going to get better and that there would be symptoms that he wouldnt be able to see or even understand sometimes. Even with my past experiences, I still feel the need to explain my symptoms to him in hopes of helping him to understand, but sometimes I guess it does come off as complaining. Sometimes I'm so tired or in so much pain that it makes me cranky or crabby, and he knows this yet has stayed by me anyway. I'm finally starting to realize that he means it when he says he's not going anywhere. When I apologize for being crabby, he says that he hadn't noticed. When I complain he just sits there and listens, so I'm coming to the realization that he really doesn't mind and just wants to make sure I'm ok. It just takes time to know for sure, and it may take even more time for your husband because this is all new to him. I had fibromyalgia for almost 5 years when I met my boyfriend, so I had been able to come to terms with it long before I even met him. My boyfriend was aware of my condition soon after we started dating, so he's had time to come to terms with it now himself. My prayers are with you as both of you are starting to deal with this new situation. Has your husband actually said anything to make you think that he doesn't take your condition seriously? If so, then counselling is a must. If not, just keep in mind that this is as hard on him as it is on you. While you are the one experiencing the pain, it can be nearly as bad for a loved one to see you suffer.

 

lisa1 - October 7

Tammy, thanks for the advise. I keep trying to remember that this disease is as new to me as it is to him. Nice to have to all to look to for advise. At least he calls my flare ups "episodes" I guess that is his way of acknowlegement. I just need to be patient with him and get over the guilt I feel about getting sick and ruining our life. Although he never has said that, I think he still has a little resentment. I still hold down a full time job and keep up the house but that is becoming increasingly more difficult. Time will tell and I continue to be optimistic. Thanks to all of you and your advise, it has made things a little easier. You are all in my thoughts.. Please take care

 

islandguy - October 7

Yes, the "but you don't look sick" syndrome.
As a guy I never knew that fibromyalgia existed and I could of been one of the ones that said...but you don't look sick to someone.
Now I know how to say it , spell it , and live it. It is one of the most horrible things that I could of caught (if that's the way you get it!) It knows no boundries and just when you have something planned .... you get a flare up and it wrecks everything.
The other night my wife and I planned an anniversary dinner at a local restaurant. You can guess the rest. I am fortunate as I have an understanding and careing wife. She will change her plans in a moment to accomodate my flare ups.
As an invisible syndrome it is hard for others to wrap their heads around it.
As a man, head of the household, bringer home the bacon, fix the stairs, or whatever it is a crippling disease.
Even cancer is either curable or fatal. This one is neither.
If your husband will read any of the posts on the net it may help him with what's happening with your body. Menwithfibro.com have a "whats it like" link and if he will , have him give it a read.
Everybody's pain is different and indiscribable to others. It would be nice to wrap it all into a ball and hand it someone to try just for one day....
Take care of yourself and best of luck. It's a tough one to get through....

 

TNUtammy - October 7

Lol island, I think I have said the exact same things before - especially the part about cancer being curable or fatal. Nearly every person on the planet has thought about or worried over someday being diagnosed with cancer, but who really says "I hope I never end up with Fibromyalgia." Honestly, I never even knew it existed until I found out I had it. I guess it's just one of those things that no one ever thinks to worry about. Lisa - I used to think my boyfriend would have to be resentful of my condition and sometimes I would even get mad that he wouldn't say anything. It's almost like I wanted him to voice his disapointment just so I would know that he was telling the truth. However, one of the things I've come to realize is that its not even the prospect of his resentment that worried me so much - it was mine. I'd never really thought about it before, but one day I finally just came to the realization that all the things I knew he had to be thinking, or the things I feared he would someday say were actually the things I was thinking about myself! It was my own resentment of my condition that worried me so much, and its almost embarrassing now to think about how I had pushed all of this off on him in my mind. Sure, there may be some resentment there on his part but its more the kind of resentment you feel when something doesn't work out the way that its supposed to. You don't resent the person or how they deal with things, you're just upset that it happened at all. I just hope that you never feel like he resents you, and hope that your situation is in fact like mine. It can be hard to accept, but is a huge relief once you figure out where these thoughts are coming from!

 

lisa1 - October 8

Thanks again for all your input. Tonight I am going to ask my spouse to read this forum and then ask if he has any questions. Baby steps I guess..Tammy you hit a soft spot about the resentment,I do have alot of that. I try not to show resentment toward him as I stated before this is as new to him as it is to me.I know it is not his fault. On the outside I do look healthly enough most days. But even I see my face take on a different look when I am really sick., I guess being a little more vocal with him and trying to explain are the first steps(again). This time without the guilt, resentment and fear and with a little more patience. Thanks everyone. Hang in there all.

 

Gabbie - October 8

For Lisa1. I too hit on this just a few days ago by accident and it's helpful just to read about others with this awful thing. I have a wonderful family that I love dearly and I know that they love me also, but they don't completely understand fibro because we don't look sick. My mother-in-law years ago had it and we used to roll our eyes when she talked about the pain because we thought she was just out for attention. I know better now. I was diagnosed not that long ago also, although I've had symptoms for many years on and off blaming them on other things. I went through some depression, feeling sorry for myself and anger, but I realized that was making me feel worse. So, I decided to try to keep going even on the days when I hurt, creak, feel dizzy etc. etc. and have found that I actually do better when I don't feel sorry for myself. I don't think people will ever understand fibro unless they are walking in our shoes so I've just chosen to do the best I can, talk about it the least I can and try to be as "normal" as possible. It's not easy at times, but for my own "sanity" so to speak, I find it to be a better way to go because I'm determined to not let this get the best of me. It took my husband awhile to see that I have days that I need a little help doing things and now without making any comments, he just helps out without the two of us having any discussion about it. Sometimes too much talk is not good either. I don't know how young/old you are, but maybe your husband is running a little scared to see that you are having a hard time. I'm not giving him right, but maybe he just needs a little time also. I wish you well.

 

TNUtammy - October 9

That's a really good outlook to have Gabbie. It can be so hard not to complain when you honestly feel like every part of your body is rebelling against you. There are times when I just can't hold them back, but I feel even worse about it later because I know I need to be focusing on the good parts in life. My boyfriend never seems to mind when I do complain, but I've asked him to stop me from now on because I feel so bad about it later. Just remembering that I asked him to do that kind of helps me to keep it to myself and try to think of something more positive. He still understands that there are times I need to let it out so he just lets me cry and tells me its ok. Lisa - I've noticed that my face does the same thing on days that I'm really sick or having a flare-up. Then again, I don't think I've looked the same for a long time now but no one else seems to have noticed. Maybe its just me but I look at myself and think I look quite sickly, to be honest. Then out of nowhere someone will tell me that I look good so I just don't know anymore. I guess when we look at ourselves we could be seeing how we feel instead of how we look.

 

lisa1 - October 9

Tammy, I hope I don't look as bad as I fell but good idea about the complaining. It goes along with Gabby and thetalking to much. I am staying very optimistic and will try to continue to focus on the good.Thank for everyything. Please check out my new question concerning meds.

 

Gavin - October 15

I guess I find his denial not too out of place when it still takes me so much effort to accept I have FM when I know I do, Ive been diagnosed, I ve been hospitalised and Im no longer working and can hardly move!

My partner has great difficulty in understanding the illness and most often has trouble understanding the management of it,in that when nothing is wrong you dont do anything to make it wrong, because she is used to my previous life of high activity.

It is still a struggle for me after 5 years.

One of the issues i have identifies with her denial is that she cant cope with having to "look after" me like Im already and old aged pensioner and Im only 37.

Chin up :)

Gavin

 

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