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Husband Doesn't Understand


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#1 Marie W

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Posted 29 December 2006 - 05:30 AM

I really have to vent. My husband just really doesn't understand what I am going through. He is a very active person, as I use to be. He thinks if I get back to the gym and lose the weight I have picked up( because of all the prednisone I have taken in the past several months) I will be "just fine" He doesn't understand how much pain I am in and how tired I am, maybe because I don't constantly complain. I have difficulty some days just climbing the steps in our home. I am still working every day. My self- esteem is at an all time low. I have gained about 40lbs! and haven't been able to work out for several months. I know part of his problem is we use to do a lot of things together that I am not able to do anymore. Does anyone else have this problem?

MARIE W

#2 Sheryl

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Posted 29 December 2006 - 06:13 AM

Hello Marie,
I have the very same problems. I have limited sestemic sclerosis and my husband doesn't SEE anything wrong with me. He has no clue what happens on different days or for prolonged peroids. Unless, he actually sees me pulling myself up the stairs which I avoid with a passion. Since he can't see anything wrong physically, then there must not be anything major wrong. I have given up even trying to let him know how I might feel on a given day. I just make up an excuse why I don't want to go somewhere or don't wish to do something at a given time. Such is life. We just deal with it. I'm trying. I really am. Ha! He might say something to me like. The doctors fixed your bowel problems or your acid reflux or your carpal tunnel. You shouldn't try to find things wrong with yourself. No clue. He has never been to a doctor in his life. Doesn't understand. Sheryl
Strength and Warmth,
Sheryl

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#3 nomorepain

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Posted 29 December 2006 - 08:44 AM

Hello Marie.

I thought I had a significant other who cared or understood. We dated for 7 years and he was very supportive of me through my Epilepsy and now my Diffused Systemic Sclerosis, diagnosed in January 2005.

He started off by really showing support then things started to change as I changed and got progressively worse. He saw the things I could no longer do or had trouble doing. He was afraid to touch me often for fear of hurting me. Our sex life dwindled to hardly nothing. We use to be so passionate and now when we hugged and kissed it was hard for me because I could hardly squeeze him, or look up at him (because it would hurt my neck) and kissing vanished because my mouth is so tight now.

Needless to say he left me on Thanksgiving. He said he got tired of taking care of me and needed someone to take care of him. He wanted to be able to go places with someone and I was not able to do that because I'm in the hospital every month.
I wasn't feeling attractive before, can you amagine how I feel now. But we are suppose to STAY STRONG!!!!!!

#4 LisaBulman

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Posted 29 December 2006 - 08:44 AM

Hi Marie,
I went through the same thing and sometimes I think I am still dealing with it 14 years later. Men really don't know how to deal with things like this so they usually choose to ignore what is going on and try to look for that quick fix, like get to the gym you'll better. Maybe if you showed him some literature to read or had him read some posts here he might get a better picture of what is going on.

There is also this: The Spoon Theory

We are all here to support you so vent away....

Hugs,
Lisa
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#5 peanut

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Posted 29 December 2006 - 10:44 AM

Hi Marie,
I'm sorry to hear about your troubles. This disease has so many challenges and its difficult when we don't feel understood by those closest to us.

It’s hard for people to understand something that may be unseen. I visited my extended family over the holidays. They know I have health issues without the specifics, but visually I appear “normal”. They don’t see the weight I’ve gained (I'm the heaviest I've ever been) or my struggle to breath because of my ILD. The fatigue, the gastro issues, sore feet, etc are issues they may never fully comprehend. But I hope in good faith that they’re trying and offer grace and understanding so that they might offer it to me in return.

I totally understand the exercise, weight and the inability to do activities. It is a challenge, but my hubby and I are learning to communicate so both of our needs are met. I tell him how I feel when things change without being whiney and he’s learned to listen and ask. I love doing things together, but we are learning to do things on our own. We too use to exercise together and I also work but I become tired, get home too late and fall asleep early. So he goes to the gym while I’m sleeping. I know how you feel…

He is also just realizing that there’s no reversal and no sure short of a miracle which is a real bummer. I finally gave into anti depressants and they’ve been such a relief for both of us from the tears and lost self-esteem. I cried all the time. I was very resistant to anti depressants and I know they’re not for everyone.

I don’t know if any of this will help but know you’re not alone. Gaining weight makes me bummed out too, but my nurse says getting healthy is more important than the gym. I don’t know if it necessarily makes me feel any better but knowing I’m getting healthy does.

Big hugs – Get healthy!
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#6 Patty

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Posted 29 December 2006 - 12:02 PM

Hi Marie,
I am so sorry that you are dealing with this. I understand because my boyfriend is the same way. He went to the Dr's with me yesterday and asked some questions and the intern gave different answers that the Dr that was doing a fellowship a couple months ago. Now I am told I am fine. not much wrong with me by this new Dr, YET they doubled my prednisone. hmmmmmmm if I am fine whats up with the increase right. Now my Boyfriend left me huge list of things to do today while he's at work. I have mctd OR overlap. I guess it depends on what Dr I get and what they think because I have been told both. My point being I understand what you are dealing with and how hard it is to live with someone that just won't get it or refuses to get it. Maybe its his way of shielding himself from the pain he sees in both of your futures. Just a guess. I did ask the DR if it was normal and OK for me to have days that I just didn't feel good and feel like doing anything and he said that YES it was normal and I should have days like that. He sorta said 2 things yesterday but its OK I will take the OK to have bad days because I have them and I think we all do. I had bad days before I got sick. I am glad that we have this board for sounding off on things like this.

Oh I also gained over 40 pounds and well I hate it but I know that once the meds work and I can go back off, I can get my lovely girly figure back LOL. I know that I have more weight gain on its way with the doubling of the prednisone but its OK, I wanted to buy new outfits LOL At any rare as much as we hate the treatment, I have learned to love it because without it I would not be able to walk at all. I figure a few pounds is worth walking and playing with my grand daughter I am raising. Its gets easier when you learn to embrace the meds then to hate them. hating them holds you back form moving forward I think. I just figured this out over the last couple days to be honest. I am happy that I did now I won't feel so bad about the new dose of predsione.

If Life hands you lemons, make lemonade.



Warm Hugs,
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#7 debonair susie

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Posted 29 December 2006 - 12:17 PM

Hi Marie, Sheryl, NMP and All,
It's an emotional sore that the husbands also "don't see"... I sure understand your feeling... all of you. This is what I've done: I ran off copies of information on the various chronic illnesses I have and have "placed" them for him to read, which he has/is doing. Having done that, he has an opportunity to absorb what he reads, at his own pace and then "move on" to the next information sheets I have "left". Believe me... it works very well and he doesn't feel "threatened", as it were. Our guys, I really believe, want to understand, but as was mentioned... When we are no longer able to function as we once did, it does scare them. My husband thinks that if he pushes me to do certain things... that I'll "come out of it". However, since having read some of the materials, he has taken a new stance and that is of empathy. Might I also add... he has his own battles with his health, so that is another reason he can better understand.
At any rate, each and every one of us has such inner strength, which makes us who we are and the reason we are able to do what we do :rolleyes:

Hugs to all of you,
Susie
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#8 debonair susie

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Posted 29 December 2006 - 12:37 PM

Sorry.... I have more to add to this thread... Please bear with me?

Just a few hours ago, my hubby and I found out that my hubby's ex-wife (She and I call each other wife-in-laws) had been admitted into the hospital on the 27th (Wednesday). He and I immediately wanted to find out what has been found out with her and began calling the kids. At last, we were able to visit with her (via phone) and find out what they know. Her lung had collapsed for the second time in 3 months, she had pain in her heart area, which mad her think it WAS her heart and took action.

The reason I brought this up is because all of her kids have been thinking she's just being a pain, when in fact, I've been telling all of them (and my hubby), that I have felt something IS wrong, or she wouldn't be lying down all the time and letting her house go as she has. When we heard this news today... I was not at all surprised, but I've been very concerned for and about her.
Maybe the kids will have some compassion for her and her health situation now. I'm just keeping my fingers crossed (the best I can, anyway)... for her.
Thanks for letting me tell you about this.
Hugs, Susie
Special Hugs,

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#9 9ynes_wifey

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Posted 29 December 2006 - 04:11 PM

I completely understand...although I"m not married. I am in a relationship of 6 years and I use to be active. What is no fun is that I'm only 21 years old and can't do more than half the things I use to and my man is active as well.I have a hard time walkin to the corner store without hurting. He gets irritated when he can't horseplay with me as much becuase I hurt. I'm not all innocent though. I haven't done too many of my exercises or stretching to limit the pain. My problem is that I didn't have any motivation, and I think I do now. That's what's actually been a problem in our relationship. I am not doin what I need to to make myself more healthy, and he's upset about it. Did you ever have any problems with motivation, even if its suppose to benefit yourself? This is my first time on here and it actually feels good to talk to someone...whoever is listening. I hope you all are ok.

#10 Heidi

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Posted 29 December 2006 - 04:32 PM

Hi 9ynes wifey,

Welcome to the forums! I am glad that you found us and are joining in by posting your first message. I hope that you will tell us a bit more about yourself and let us all get to know you. I am sure you will find everyone here very warm, supportive and encouraging and more then willing to provide information and advice when we can.

Again, welcome!

Warm wishes,
Heidi

#11 jefa

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Posted 30 December 2006 - 01:57 AM

so interesting to read all of your comments about how those closest to us can fail to see so much. My husband has not been particularly lacking in understanding, but about a month ago, he became ill with depression. This is the fourth serious bout in his lifetime and the second since we have been together. We will get through this time like we did the last time, but it has been an eye opener for him as he has suddenly become aware of how my life has been going as he has been hit with extreme fatigue, a lack of energy, loss of appetite and breaking into tears for no apparent reason. He said to me the other day, So this is how you feel? Even though he had been there before, he had forgotten the specific symptoms. I said, "Yes, and add to that the Raynaud's, sore joints, stiffness, itching skin, reflux, constipation, etc.." He gave me a big hug.

#12 Marie W

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Posted 30 December 2006 - 06:56 AM

Thanks so much for all of your support. One of our problems is, my husband is 10 years younger than me. We have only been married 4 1/2 years. We dated for 4 years prior. I had been divorced for many years. The age differance really bothered me. My husband had never been married and didn't have any children (I have 2 grown). He repeatedly assured me he didn't want children and he really wanted to get married because he loved me and we had "some much in common". I resisted for 2 years but finally gave in because I loved him. I can't help but feel he is not going to stick around. I never realized until I got sick that he is really not a very understanding person and that he is really quite selfish. I saw the signs before with other people, but I guess I choose to ignore them. Such as it is, I will have to deal with whatever happens.
Marie

MARIE W

#13 ElizaJ

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Posted 30 December 2006 - 02:12 PM

Hi y'all - and here I felt like my hubby was the only who did not really understand. I can't say that he does not care because he does but he ignores me alot. He never asks me to go anywhere at all. He does not talk to me about this illness at all! It is like if he ignores it, it will go away. It hurts me alot that he won't ask me to do anything. He takes off with his friends when the whim strikes and leaves me and the children at home as if it is the most normal thing in the world. The worst part is I am supposed to like it because he "can blow off steam". Well what do we do? He just came in a minute ago and said oh honey by the way I am going to a New Year's Eve party of sorts, a poker game with the guys and I won't be home, ok? Well what in the world do you say to that, No you can't go!!!!!!!!
Sometimes, I just dont think the good things about him outweigh the jerkiness he exhibits the other times.
Sorry to spill over the page here but I just had to get it out. Thanks for listening and good luck with those significant others everyone.
And by the way, HAPPY NEW YEAR, to all of you!!!!!!