Partner feeling helpless?

[northstandgirlie]

:hugbetter: Just needed to get this off my chest.

I've just been diagnosed with primary sjorgrens. When I printed out some info for my husband to help explain it, he wouldn't read it. Just said that there was no need as it was just another thing wrong with me that he couldn't do anything about to help. I think it's just borne out of frustration - I was diagnosed with endometriosis nearly 13 years ago and we've been through the mill a bit. And now SS. :sigh:

Is he likely to come round? Should I push?

Confused!
Rita :nono:

[alobreto]

Hi, Rita! ;)
I don't think I've seen your posts before, but the memory is not perfect. Anyway, I'm glad you're here.

You know your fellah better than I do, so I really don't know how to respond to your query about if he'll become more interested in learning about your illness.

I would like to say that even though it is easier if your partner arms himself with some knowledge, the most important thing is if he is supportive and tries to make the best of things.

Most men tend to be "fixers," and if they can't solve the problem they avoid hearing about it. Women, on the other hand, are "investigators," and we will mull over a situation for as long as possible.

I think it's a mistake to try to turn men into girlfriends. That's what girlfriends are for! If your man is a great guy, accept him for what he is and use your girlfriends for your sounding board... or even better, come here and tell us. We understand.
Best regards,
Angela :flowers:

[confused1]

Dear Rita,

My dx is also Primary Sjogren's. Sjogren's can cause a wide range of physical problems way, way, way beyond dry mouth and eyes. My initial dx was lupus and the first thing my husband found on the internet was a reference to a 10-year survival rate for lupus patients of 80 percent and he just wigged out. My health has been a problem for many years -- probably since our oldest son was a baby (I think that's when all this started). After a short, panic-stricken time when he couldn't take a breath, he settled down and we began to look at what this all means for us as a couple and as individuals. We went to a therapist for a while. It helped. He was able to say things to the therapist that he couldn't tell me directly. He was scared. And I think men in general don't like to admit that some things can't be fixed and that they're scared silly.

I don't think pushing ever helped anybody accept anything. We all come to acceptance at our own speed. I would strongly suggest at least a short course of couple's therapy for you and your husband. This thing affects the whole family. I try hard not to fill the space in our home with my illness, but sometimes it still does. And I try hard to find other places and people where I can vent and talk and mull and sound off. This site is great for that. People here understand and share the same issues. We can say anything to each other here. In a sense, it protects the people I live with from having to endure every vent and fear that pop up in my foggy brain (thankfully my memory is so bad that I forget a lot of those fears very quickly :lol: ).

I didn't mean to write a book here. I hope you and your husband can find a way to talk about your illness. It's important. But you both have to be comfortable doing that. And a mediator (interpretor?) may be necessary. In the meantime (and forever, actually) come here and vent and sound off to us. Come to chat and yell your head off and we'll listen and nod and talk about how chocolate keeps us sane. You've joined a club that none of us ever wanted to be a part of :lol: . But we do support one another here and you will find companions and fellowship.

Love and good luck,
Sunny

[deNile]

It takes a while for my husband to come around to anything new. That and he just hates to read. He worries and doesn't want to accept anything negative. I feed him bits at a time. I still don't know if he has ever read the email I wrote to my relatives explaining the disease. I think he did months after I sent it to others. If I really want to push without pushing I take all the other reading material out of the bathroom and leave a copy of what I want him to read :rolleyes: It usually gets read that way :D

Sherry

[ruta74]

Hi Rita!

I had Lupus years before I met my current partner. In the beginning of our relationship I felt pretty good and my illness didnt show from anywhere. I didnt tell him right away either. He probably thought I was taking birth-control pills when I was taking my Plaquenil every day.

Now my illness have become worse, I have constant head-aches and my bladder does not leave me alone and I am so tired that sometimes I even eat lying down at the sofa.

I once gave him read the same Lupus site here. He practically refused when he realized it is so bad. Now he is on denial. At least he does not accuse me of being lazy or faking it.

So I give him the time to absorb it. And I really hope he does not freak out when it gets worse with me. And as long as he just understands and supports me I do not force him to educate himself about the disease if he does not want to.

Be strong and give him time. I think you should not push either as long as he is still there to support you no matter what.

Wish you quiet and stressfree X-mas waiting period to have then the best X-mas ever! :santa:

Ruta

[northstandgirlie]

:love: You guys are fantastic!!

All the things you've written overnight make a lot of sense. Angela is right about thefixers/investigators differences between men and women. Because he can't fix this it's easier not to know.

Sitting here with a screamer of a headache (?stress ?SS ?who knows), it's very comforting to know you're all here when I need you. As I will be for you too! :)

Thanks again and have a good holidays, however you feel.
Rita :wave:

[northstandgirlie]

:love:

How on earth did I doubt him?

When I opened my Christmas card, he explained that he hadn't written in it as there was nothing more to add. As I read, I started to cry. I can't believe I doubted that he'd be there with me every step of the way.

Keep the faith guys. :thumbs:

Rita

[halfpintfl]

:wave: When I got dx with lupus, hubby was a little scared, then he began reading
some of the info that I had gotten printed out and he became very scared. But, as someone already said, men don't seek help, as they consider it a weakness.
It just happened that when his appt with his gp came around, he said that he would go alone, I said ok,

He came home a totaly different man. Our gp is a man, and so hubby felt free to talk to him and tell him all about things in our house. The doc. put him on an antidepressant. He said having a chronic illness(me) I needed an antidepressant,
and living with a chronic illness that hubby needed an antidepressant too.
HJubby came home feeling like the weight of the world had been lifted off of his
shoulders.

Just my experience, hope it helps someone :nurse: B)

[stilltruckingalong]

Hello everyone! Welcome Rita! You've found a new home!!!

Just wanted to say that these are some of the most succinct posts I've ever read on both the effect of chronic illness on the patient and the marital relationship. Men and women are different - and that comes to a head when taking in such a frightening concept that your life partner may have a potentially fatal illness . Taking in new information, men ,as fixers, don't know what to do for a while. They are in shock. It is not that they don't care. They are at a loss of what to do. It is not something they can fix. But in time, if they are willing, they observe what your life is like, and help you make adjustments in your household or schedule that will aid in your comfort and well being. So he can have something to "fix". Not the disease, but chore distribution, scheduling, flexible mealtimes, learning how to participate in some of the chores you are no longer to handle, etc. You'll be able to have a new kind of partnership, in addition to the life and love you shared prior to dx.

Excellent posts, couldn't have put it better myself. We are here to act as a support network for each other. To have the understanding and the support of a loving family is the icing on top of the cake. Don't ever try to turn a husband into a playing the role of "girlfriend" unless he was biologically programed not to responde as a "fixer". Love the man for who he is. And he sounds great! You are blessed to have him as a support team at home for accomodatiing the life style changes that may come about due to your illness, and that is a gift. Treasure him.

Good luck,
Cath from Vermont

[Sarah A]

Your partner is well aware of the "difficulties" that you are experiencing or could develop and is scared by it all knowing that he can't change anything, so for now he digs his head in the sand hoping for it all to go away.

Given time, he'll come around.

Sarah

[northstandgirlie]

:love: Thanks guys!

Had another 'dip' a couple of weeks back with hubby. Said he thought I'd made myself into an invalid since my diagnosis and perhaps some of it was in my mind (this followed a day when I was so washed out that I rarely got off the sofa!) :tantrum:

When I told my GP and rheumatologist, they both said not to take it to heart, he will come round. And no, it wasn't psychosomatic! But in the meantime I've just not told him how I was feeling, which is very counterproductive! Sadly, my worst day yet, he wasn't around to see it. It was the first time that the small bones of my hands and feet hurt as much as the swollen glands (felt like I'd been crucified). Even my boss was worried as I'd barelty slept and was in obvious distress.

:sigh:

Maybe I'll take halfpint's experience and get my GP to talk to him next time he's visiting.

Thanks for the support (which is always here!)

:thumbs: Rita

[lullrich76]

I just came across this post. I happened to have had a similar conversation with my boyfriend last night.

He is always calling me a complainer, which really offends me because I don't feel that I am. I vent to him and I tell him when I am not feeling well, but I am not doing it to complain, I am doing it to express my feelings or frustrations.

Whenever I tell him an ailment, he get all melodramatic on me which hurts my feelings because I feel like I am being made fun of. Or, he will just ignore me. He will say things like, "WebMD just called wanting you to pay your subscription fee."

He said last night that since I don't have any girlfriends that I treat him like one. I should be telling all of my complaints to my girlfriends and not him. He doesn't know what he is supposed to do or say. He loves me so much that it makes him feel terrible because he can't do anything to help me feel better. He also feels bad that he can do so many things to enjoy himself, but I can't because of how I feel. He said alot of things last night and I can't remember all of them, but it made me feel bad.

He is the only good thing in my life right now and it probably doesn't help that we work together. My job and boss really suck which stresses me out all the time and then there is my health. I can't help it that I have some sort of ailment on a daily basis. I guess that when he asks me how I feel that I should lie and say fine and move on. I have talked about finding a new job, but he just gets mad when he sees me looking in the want ads. I guess I just don't understand his point of view as much as he doesn't understand mine.

So I cried myself to sleep last night. I don't cry very often and I did all I could not to cry in front of him. I don't want him to feel as is he can't tell me things because I will cry. I just feel like if I keep things to myself that I am not giving 100% of me to the relationship. If he doesn't feel good or if someone irritates him he vents to me as well. I don't understand why that is ok, but it isn't when it comes out of my mouth.

What Angela said above about men aren't girlfriends is exactly what he was telling me last night. I never thought about it that way before. I guess I was being naive and thought that when two people love eachother they share everything. When really that isn't the case. All I want is to tell him how I feel, but he can't just listen and move on. He doesn't want to hear about it if he can't fix it.

[stefanie]

Hi

I wouldn't push him, he's likly to only become more frusterated. In time he will come around he loves you and it probably hurts him to know that there is something else wrong and he is helpless to fix it.

In another month or so approach the subject again and tell him very gently that it would mean a lot to you if you two could look at the information together, whether it's a book, internet search, pamflet, ect... maybe showing that it would mean a lot to you would help him to understand that knowing about it is important, maybe tell him that your a little scared about learning that you have a new illness and you would like the comfort of being able to reaserch it together. If he still refuses then just leave it be I have confidance that one day he will come around and want to know.

Also involving him in doctor visits is helpful, i've let my boyfriend in on my tests and visits as well which is great that way the doc can explain things.

just remember it's hard for him to right now to see someone you love sick is never easy so be loving, gentel and paitent and he will come around

take care love style_emoticons/<#EMO_DIR#>/flowers.gif

[northstandgirlie]

style_emoticons/<#EMO_DIR#>/wavey.gif Hi,

Some things change; some stay the same. Reading the last two posts had the 'wow' factor for me.

I haven't been on the board for some time, so it was odd to see one of my posts near the top of the board. I can't believe that my relationship had not moved on from my original post! My hubby has got clingy and possessive lately, asking me to give up my outside interests as I have 'changed priorities' and have let the house go!! style_emoticons/<#EMO_DIR#>/hissy1.gif Add to that he said I often used my Sjogrens as an excuse not to do things (like the housework)!! It had me at my wits end - angry AND hurt. style_emoticons/<#EMO_DIR#>/tantrum.gif

There are times that I can't lift my arms above my head, my hands are so 'bone' sore I'm worried to lift things in case I drop them and as for my 'hamster head' when my glands are up...... style_emoticons/<#EMO_DIR#>/sigh.gif

Being told that your rheumy is wrong (saying you should rest until the pain passes) and that you should just 'get on with it' makes you worry for your own sanity, your own belief.

Some of my friends want to deck him, some are astounded by his insensitivity, some just say take no notice. The one constant is their support and the apparent lack of from him. style_emoticons/<#EMO_DIR#>/huh.gif

I just get on with it in my own sweet way. If he catches me crying that's his problem, not mine.

Keep strong and thanks for being there.
Love Rita xx

[rwb200]

From a mans point of view I would say do not push.
Each person has there own way of dealing with things and when things seems helpless and like there is little or nothing you can do then it brings out some real odd ball reactions.

One thing that is fairly constant is the part of any person that does not want to feel pushed. In a stressful situation this could bring about a very nasty responce that you do not need or want.

It is good that you have supportive friends who are there for you and willing to help. But I hope they are not becoming cold or rude to your husband because of what they are hearing. If they are he will pick up on this and it will cause problems.

Your husband has stuck with you in past situations and he has been there for you. He may not have always been real pleasant but he is still there. Give him some time to come around and see if it does not improve.

[carla1962]

Hey Rita, Don't give up hope !! My husband is the same..I haven't been DX for sure yet,Still seeing a neurologist. But he makes ME feel like I am weak sometimes..And alot of the time,he don't mean to..It's just a "Man" thang..These Ladies here have been my "girlfriends" for a short time,But have already helped me in a Big way. My husband is a good man { I don't know yours,but I'm sure he is too,or he might not have stayed,..some don't} Anyway,Mine won't read the stuff I give him either..So I just stopped giving it to him..I sometimes try to explain what is happening to me when I have an "Eposide" {or Flare} But sometimes I don't know myself,and sometimes he don't want to hear it..I've noticed him listening tho,when someone else ask me about a certain symptom....No matter what is "Politically" [sp] correct...A Man is a Man..and they feel they should be able to "Fix" everything. But it's not JUST men. My Mom more or less said I was "just lazy"..She never Said the words..But I can read between her lines..UNTIL, she actually saw mw during a really bad flare,unable to walk...Now she don't call til after noon,because she knows I have trouble sometimes getting up { Fatique,pain,Paralysis etc...}
If you want to CRY!! Go ahead and cry..Cry WITH us..We feel your pain...{Oh, My God, I sound like Bill Clinton! style_emoticons/<#EMO_DIR#>/rotfl.gif }
I know it's an old saying But... We are ALL in this together..And that's alot better than being alone..
Cheer up...Maybe he'll come around,sometimes it takes time..
style_emoticons/<#EMO_DIR#>/whisper.gif
Carla

[Oohmeknees]

Okay girls!!!

I know I'm out numbered, but lets not write off male partners just yet!!

Own your own illness! Yes these Boards are great for getting info, sounding off, and getting support. But our partners dont know what we are going through, and in fairness they too will be going through something themselves that maybe we dont understand. Maybe he is lost, maybe he is frightened. How many women think it manly for a man to admit that?

Yes men tend to look at things logically, but that does not mean that if they dont understand it they forget it, or that it does not affect them emotionally. Yes Girls we have feelings too!!! And this gender thing works two ways. I have four sisters and a mum. I dare not tell them the full picture, why? Because it will not make me any better. They would only worry, and then I'd get nagged. They would only see what they saw to them as important, whilst I may see something else as an issue for me.

[lauralee77]

Your posts were really helpful. My mom told me the same thing....that men want to fix everything and it is so true.
Now that i have had to take medical leave, i think reality has finally sunk in to my husband that I do have this disease and that it could get worse. He was in denial at first and wouldn't even talk about it. He would change the subject when i brought up my lupus. Don't get me wrong, He was really sweet by massaging my aching joints and helping me get in and out of the tub and stuff like that He would also tell me I looked good even though i hadn't taken a bath or put makeup on for 3 days!. But he would act like it was no big deal and that it was just some kind of arthritis I had or something. In exasperation, I got really mad at him and yelled out "WHy don't you ever talk about this.? Read about it or something! Become knowledgeable. "
When I finally broke down at work the next day and told my company what was going on and that I needed to take a leave, i went to my parents for a few days because my mom is basically the only person i can talk to about all of this. When I came home, i noticed my husband was a little different. He has always been really funny and making jokes out of everything. He was really serious and not laughing much. Then yesterday, after he got off work, I found him on the computer reading about lupus. He also asked me, "What hurts today?" and was telling me he would get another job if he needed to. That made me feel worse! But now things are kind of strange with us because he doesn't know how to make me feel better and i am seriously depressed.

[alobreto]

Hi, Lauralee! style_emoticons/<#EMO_DIR#>/wink.gif
I'm concerned about your depression. style_emoticons/<#EMO_DIR#>/hugbetter.gif

All the chemicals your body releases when it is under stress can make your lupus symptoms and the disease process itself worse. Depressive symptoms need to be treated just as agressively as physical symptoms.

Many of us take an antidepressant with good effect. Many of us also see a counseler to provide guidance in speeding up the process to a better outlook, better interactions, and better relationships. Many places offer counselling at little or no charge. County mental health services do so in accordance with a fee scale based on income because they are subsidized by your tax dollars. Another option is your religious leader or assistant at your house of worship.

I hope things improve for you soon!
Angela style_emoticons/<#EMO_DIR#>/flowers.gif

[lauralee77]

Thanks Alobreto,
I am currently getting help. I've just taken a medical leave from work to deal with my anxiety and depression. Today I saw my psychiatrist for the 2nd time and I see a psychologist tomorrow so I can talk about everything. I'm having a really hard time right now but the main thing is that I'm getting help. Now i'm worried about my husband. He is trying to be strong for me, but he is not his usual self. I saw tears in his eyes earlier and i don't know what I should do. He's got alot of stress over this becaue of my illness and the fact that i'm not working. Maybe it was better when he was in denial like before. He's been asking alot more questions about the disease and my medications. I don't know how to talk to him about it, but i don't think i could convince him to go to therapy.

I am trying to get involved in a church and i think he will go with me if I ask him. This might be good for us

[BethannUK]

Last night, I got stuck in the tub and had to call my hubby for help. He came right away, but did say "If you had told me you needed help right off I would have been here- " kind of to explain why he was a bit frustrated as he was on the computer and I interrupted what he was doing.

This led to a good talk, and he said

"With you sick I feel so helpless, powerless... and I am supposed to be able to help you, to fix you, but I don't know what to do, I can't fix your pain, and it makes me feel so guilty and worthless."

When I said I was sorry for asking him to help me get out of the tub (versus planning ahead so I didn't interrupt him), and explained that I wanted to try to wash myself but couldnt get out of the tub, he said "I would have washed you- it would have been nice to be that close to you for a little while, we get so little intimate time now..."

I think sometimes, based on his comments, I see things so much only from my perspective that I might miss the fact that he is grieving too, that he maybe doesn't have the physcial pain but he feels helpless and powerless too... I sometimes feel so worthless, but he feels that way too. I never realised.

It doesn't explain really why some of our family and friends ignore us, or some think we are Olympic-class complainers, or think we are exagerating- but, sometimes, even we can't believe what these lovely A-I (Auto-immune) illness are throwing at us- how can we ever hope for someone else to understand?

And maybe in our struggles sometimes to not burden other people we are losing out on new kinds of opportunities to have the time and occurences with our loved ones that they, and we, miss so much.

I think sometimes our families and friends feel afraid and inadequate, and they miss the old us. But to complain and be sad, like we do about our aches, pains and problems, might seem like a betrayal and they wouldn't want to add to our already overwhelming pains.

For me, I am going to try to make more time for my hubby in different ways- encourage him to go out with his friends, to get out without me, let him know when something he does really helps, let him know how grateful I am. He can't ever really understand, no matter how much he knows about my illness, but I can try a little harder I think to understand him and his needs as a result of me being unwell. He's such a good and loving man- I don't want him to hurt inside.

[lauralee77]

Bethann,
That was so sweet of your husband, it brought tears to my eyes. I hope mine will come around as well. I'm learning that men just deal with things so differently. He's having a hard time right now and now i'm more worried about him than I am myself! I was so mad at him before because he didn't want to read up on my lupus and become knowledgeable. I thought he didn't care, but it turns out he was scared. I even said something to him once about how he really needed to read up on it and find out what i'm going through. I think that made him feel guilty.
Now that he's realized the seriousness of it, he tries so hard to be brave and his usual funny self, but i'm not stupid. We've been together for 6 years and I know the man and can see right through him. I can tell by his every action that he's on the verge of tears and I don't know what to do. Everytime I try to mention something, he avoids the subject and can't meet my eyes. So i've been leaving him alone as much as possible to let him grieve. I don't know if this is the right approach. Why does he have to put up this brave front for me? I would feel much better if he would just let it out instead of bottle it up inside. Now he acts like he doesn't want to be close to me. He's pulling away. And he's waking up numerous times at night, not able to sleep. It's really tearing me up and making my anxiety and depression worse. He's a wonderful husband and i am so lucky to have him. He needs to know that. I have to look at this positively that maybe it'll strengthen our marriage. Especially if we can do some kind of couples counseling.
I guess men really are from Mars.....

[BethannUK]

Maybe if you printed out a copy of your post and left it for him where he could read it privately? It is so eloquent and really says clearly how much you love him, need him, and want to help him.

He sounds like he loves you and is really struggling, not knowing what to do.

It's too bad there are no medications or therapies for our families, to help *them* deal with the symptoms of the disease.