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Discussion Starter · #1 ·
How active is your husband in your health? I hate feeling like everyone thinks I am faking it - you look fine so why are you always saying you are sick? Or I get the "your sick everyday so whats the difference". I dont get sympathy at home or work because no one knows what I go through on a daily basis or how I feel. I am still expected to do the same things because I have to. I hate feeling like I am complaining to because no one likes a complainer. Can you relate? Do you have advice?
 

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I am very lucky, if my hubby knows that I am trying, he is good about things. If he thinks for one minute that I am just being lazy for the sake of being lazy then I get nothing from him at all. but if I am truly run down, and exhausted and just can't go about my day, he takes the kids, does the laundry, makes dinner and just lets me sleep. We have been married as long as i have been sick so he really barely remembers me any other way, maybe that makes a difference.

I don't share my sickness with my work, so I get nothing and no support there and I do my best to not complain too much to my friends. And, well, my family is a lost cause, so all I really have is my hubby and the kids.

I am sorry you don't have the kind of support at home that you deserve, that can be hard but you should try and share your feelings with them and let them know how things effect you and how thier support will really make a difference to you in the end.

Good luck
 

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your not alone

hi im new here.i was just recently diagnosed with lupus. I have been married for 5 years now.My husband used to call me a hypercondriac.I was always complaining..it seamed i was always sick..an infection here an allergic reation there.When i started getting the rash he thought mabey its acne he told me to use some acne cream.I never had acne at all growing up so i could not seriously believe that acne was the cause of this.then the rash spread my hair started falling out.I got to the point where i was so tired of complaning about my symptoms.I was tired of all the ER visits.HAving no insurance made things worse i couldint go to the doctor, so i just kept them to myself.now that i really think about it though maby it was my own self doubt that was hurting me the most.I thought my husband loves me and just does not want me to be sick so ignoring it and thinking postive was his way of dealing with it.overall my husband is really supportive..when i really think about it.He helps me out alot which it sounds like i should be thankfull for because i guess not all husbands or family members can be so supportive. my mother n law is sort of a different story i do get frustrated with her because im 6 months pregnant and i just find out i have this disease..instead of getting up out of the only seat available she sits there and says im so tired from working i just need to sit and makes my husband get me another chair from inside( she has an office job where she sits all day at the computer.it made me angry at first but then i just let it go. its not that i exspect people to feel sorry for me..but sometimes i feel like people don't understand just how tired and sick i feel.They complain over minor sore throats and runny noses.I can barly walk sometimes..i have a terrible rash that does not go away.My hair is falling out and im 23 years old.
i just want to let you know that i understand how you feel
you can talk to me whenever you need to.
 

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What I would say to all of you, whether family are helpful or not, please put some thought into making things easier for yourself. Say No when asked to do things you don't want to. Don't worry if you have to leave the dusting. Have a few Ready made dinners. You can always balance them out with plenty of fruit and good cooking when you can do it. Many of us have family responsibilities and before we were ill we were the person everyone turned to. It is hard to change these habits but you will be less stressed if you can.

Also remember, Real friends would never think you are faking it, even if they don't fully understand. If you look well, be proud of it. You don't have to prove a thing!
x Lola
 

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Hi pkrdstrfsh1 :wavey:

It must be really hard for you as having an illness can make you feel very lonely anyway. Have you tried sitting down and talking to your husband and also show him this web site with some posts that others have put regarding how they are feeling, also there is a section on this site about symptoms etc, it may help if he reads those with you so you can explain how you feel.

I also get fed up of people saying 'but you look well' even when i feel really rough and in my eyes i look really rough too, i think some people don't really know what to say to you so they think that by saying you look well they are been nice and paying you a compliment.

I am very lucky that my husband is very supportive, he comes to all my appointments so he hears what the doctors etc have to say, i also think it helps him understand the illness too. When i need to sleep he just leaves me alone, whether anything needs doing or not, he gets me my meds when i need them. I can't imagine what it is like for you, if my husband didn't stand by me like he does i would feel so lonely and lost. I hope the members and friends you have met on here help with the loneliness you are going thru. I really hope things change for you soon.

Take care :hug: Jo :hug:
 

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My husband is very supportive to me. He goes to my doctor appointments and adds things when I forget something.
We have been married 35 yrs this coming fall.

My brother has sle so everyone in my family understands lupus.I have great support from my family. My friends also understand what I am going threw too. I am a very lucky lady.

I don't talk about my lupus with people.(except my brother) If they want to know I will tell them. I don't make it my life occupation to tell how I feel. There are many more things that are more important to talk about.

That is one of the hardest things dealing with lupus. We don't look sick there for we are not sick. X-ray vision would see it though.:hehe:

Take care and I am sorry that you are going threw all this.
Love,
Lyn
 

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Hi, I am lucky in that I have a very supportive husband and friends. My hubby is not active in my healthcare though. He doesn't come to appts. Except once when he paid and accompanied me to get a diagnosis. On the whole I manage by adapting and pacing myself and allowing myself to rest and not be perfect. For me I am my hardest taskmaster, I will not give in so I have to talk myself round.

Have you looked at the spoon theory and letter to family and friends on this site. I am hopeless at posting links but someone will probably know and do it for me !!!! Otherwise try the search facility at the top of the page. This can help to explain to others.

I think it is hard for the whole family. Someone once said 1 person gets a lupus diagnosis but the whole family has to live with it. It is true, men like to fix things and get frustrated when they can't. Be patient, honest and keep talking you will get through this.

It will get easier.

Take care

Deb
 

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Hi there :)

Deb's link, the spoon theory

http://www.thelupussite.com/forum/showthread.php?t=67944

another good one

http://www.thelupussite.com/forum/showthread.php?t=67968

My husband is extremely supportive in a "passive" way. He doesn't come to appointments with me unless I'm unable to drive myself and even then doesn't say a word (he would if I asked him to) as he believes strongly in people's independence and privacy.

He doesn't have the time to help clean the house but immediately suggested we got a cleaning lady to do that as he knows (without me having to say) that I can't do it. He cooks a lot (he's a chef) but I try to "organise" food for the week. I say organise as I avoid cooking because I never know when I will have the energy or will be able to stand long enough.

I generally don't need to tell him that I am not feeling good, it's pretty obvious. He knows that things aren't "set" either. I might be quite good in the morning and that means it's a good day so let's enjoy it but he knows that I will probably need to rest in the afternoon or that the following day should be pretty quiet. I'm also good at just saying "I can't do that" or "I will need so and so to manage" or "I'm going up to bed for a while"... he never bats an eyelid and has never ever suggested I'm lazy or exaggerating.

We do occasionally talk about my illness but more when adaptations are needed. Sometimes it's not easy to broach subjects (especially when our intimate moments changed to a degree or when I realised I couldn't walk somewhere and needed to use a wheelchair) but we always get there. He is very "steady" and quietly supportive and extremely approachable - a real rock to lean on and that's lovely. I'm the one that finds talking about it hard.

I don't usually "complain" about my symptoms or how I feel as I know that they are simply there and have to be lived with. I don't mean by that that I hide them but I just say it, I'm not looking for comfort or sympathy (our affection comes from the "normal" part of our relationship). Of course, if I get very down or end up blowing a fuse, he is then there for a big hug.

I am very careful to make sure that even though I can't do so many things, I do do some when I can. It might be as simple as making sure that I make him a cup of tea when he comes in, go and sit in the kitchen while he prepares supper, go up to him and give him a spontaneous hug, tease and laugh as much as possible... all just little things but they bring normality back into life and mean that my illness isn't the "only" thing I/we have.

I do understand how difficult it can be. I have an ex-husband too and his attitude (I was less severely ill then and undiagnosed) left a lot to be desired. Partially because he was very self-centred (and that, among other things, had more to do with our separation than my illness) and partly because, in his own funny way, he loved me and found it very frustrating but expressed it in totally the wrong way by shouting at me to go to the doctors (even though that wasn't working and he knew it).

sorry that went on a bit and probably doesn't answer your question :lol:

Katharine
 

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pkrdstrfsh1,

You're definitely not alone. My husband refuses to go with me to doctor appointments, tunes me out when I try to talk to him about what's going on with me, berates me whenever he finds an opportunity which is all of the time ... I have been trying to leave him for 20 years but because of chronic pain, other health issues, legal and financial issues, I have been unable to make it happen. He left me two years ago but will not agree to a divorce, would rather spend all of what's left of our meager assets to prevent a divorce rather than grant me one and split our assets. Control is all that matters to him and he'll stop at nothing to maintain it. Now he has the whole immediate and extended family berating me as well ... and when I say no because I'm physically unable to do something, the whole family ostracizes me. And I can't talk about this with anyone because everyone thinks my pain and illness is all in my head!

Barb
 

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Over the years I talk about lupus and how it affects me less and less... and early in my illness I recall vascillating constantly between wanting people to understand what I was going through & getting some sympathy/empathy... to not wanting to be "defined" by my illness and wanting people to treat me the same as always! It was difficult for those closest to me to know what to say or do...

These days I tend to not plan very much... and will simply say that I'm not feeling up to doing something instead of going into any detail and bringing up the "L" word as part of the reason. For the most part, the people in my life seem to be very understanding and accepting and are glad to help when it's needed or wanted. I realize I am very fortunate...
 

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I am lucky, my hubby is my best friend! He will say something if I do not stress some symptom if it passed over. He will say something like "is it normal for ???" or "Should it really be ??"

My family is amazing. They questions, offer support and understand when I need to whine.

I did find that all of my "friends" were not...I have a few special friends who understand when I wont plan or have to change or cancel plans...they are the only ones that matter now. I don't take the time or effort to extend myself with people anymore...I am content with what i have.

I am sorry that you don't have the support at home, maybe you can get your husband to go with you to the Dr's. Maybe if he can hear what you both should expect from the disease and the meds you might have to take, he will understand that this is for real.

Sorry - Stephanie
 

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My husband would rather not talk about Lupus. It isn't that he doesn't care. Just the reverse he constantly worries about me and would rather not to know what might be ahead. Instead he quietly tries to help me with chores and my emotional well being.

Going to appointments isn't my hubby's thing. He can't stand the smell of doctor's offices and hospitals. Seeing a blood test or an IV being started makes him feel faint. Instead if I need assistance to get to an appointment he will drive me and then sit in the car with the laptop until I am done.

You will have to experiment to see what works for the two of you. Remember you are not the only one affected by Lupus. The entire family is affected.

Take care,
Lazylegs
 

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Hi there,

I believe that education is an eye opener. Having said that, I surf the net to educate myself on Lupus and I leave the sites up that I have been reading for my partner to read and understand. He also comes to the appointments with me so that if he has any questions regarding the illness, he can ask. Cause he has read about the disease and the symptoms he understands everything that I am going through both physically and emotionally.

aybe you could sit down with your partner and inform him on what is happening and show him some sites, he might understand alot better and cut you some slack.
 

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Discussion Starter · #15 ·
My update....

So my disease has progressed rapidly over the past few months and the dr wants to be more aggressive now. I went home after he knew I was going but never asked how it went. I was in tears all the way home but he couldnt see my pain? That night I finally told him that I was going to die if it continued like this. That he has never supported me, thought I was faking it, make fun of me for taking naps, mad at me for not going out with friends, etc So I finally told him that I am done and I deserve better. He tried to deny it all like I was making it up and he never did those things but I just told him that I was going to die if I stayed in this relationship. He moved out last monday. I went monday and got a steriod shot and am still awaiting my insurance to approve the Rituxan infusions. I hate to think that I have to go through all this by myself but I was doing that before so what has changed?
 

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(((pkrdstrfsh1)))

I just wanted to give you some hugs.:hug::hug:
Sorry you are going threw so much.

Take care of yourself.

Love,
Lyn
 

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(((hugs))) It sounds as if you are comfortable with your decision and that is the most important thing. Being alone has always been more preferable to me than being in a bad and stressful relationship of any kind. That would have been my choice too...

Good luck with the Rituxan - I hope you get approved quickly and it helps a lot.
 

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I agree that my choice would be to live alone then be in a relationship that brought me down. Thankfully my husband is super supportive!!!

I am sorry your dealing with so much. I hope the steroid shot helps you and hope the insurance approves the Rituxin. Let us know how you make out moving ahead.

Sending gentle hugs and warm thoughts your way.:wink2::wink2::wink2:
 

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My husband is good about it most of the time.. as of March I have been out of work.. he works full time hours and still cooks and cleans on those days that I am unable to.. however he does have days where he him self feels overwhelmed and gets upset that he does it all.. those days are hard and we talk things out.. we have been married for over 10 years now..
 
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