LUPUS UK
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Relationship

Hi everyone

I was wondering if your relationship has got worse since you have become ill. My husband got sad, depressed and angry. Sometimes I wonder if he still loves me as much as before. We got married in 2003 and he was different. Was calmer, kinder and more patient. Now he gets angry so easily. He says he's not happy with life and he makes me feel so guilty about myself. I feel like it is my fault. I don't know what to do. I told him that if he is not happy he can leave but he says he doesn't want that but his actions says the opposite. Sorry to bother you lupies but I have no one else to talk to. 😭

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My wife is very supportive that said your fella has almost surely google YouTube lupus scared himself to death with worry about you and dose not know how to broach the subject with you take him to your rumi appointment with you get him to wright down some questions to ask. Trust me most men are crap at communicating and sayin I'm worried scared educate him with facts not the here say he's picked up on YouTube good luck

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He know how serious lupus can be but I think it annoys him that now I am sick and can't do so many things. He can be so selfish now where before he was more caring. I hope I am wrong 😣😕

He says he needs to have more fun in his life. He even booked to go to a concert by himself.

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The only time I've been pain free this yr is when I've been to the spa with the wife try it I find the steam room just draws the ian away I know this sounds mad but it really dose try it you will bouts enjoy it

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Chronic illness is a very common cause of marital problems - particularly when it arrives after the relatively irretrievable step of marriage has been taken and the partner has no personal experience of illness. Even after 46 years together our relationship is a bit rocky in places but at least both of us have health problems so really we should find it easier to understand.

I think you need to look for professional health, counselling of some sort. Even if he won't come, you can get some support and maybe he will join in at some point.

It is a bereavement - for both of you. You had a life that you had planned out, whether you were conscious of it or not. That has been stolen from you. It is very hard to adjust and the non-ill partner is bound to develop a sense of unfairness as they look at their peers who are going out and doing things like concerts and going to the footy or other "man" things and however they come over to you they have to be selish to do the same. That creates guilt.

Most men are very bad at dealing with illness - never mind whether it is themselves when they won't go to the doctor or their partner where they perceive their lifestyle is at risk. And however they come over they are terrified of losing you. Especially, as Ian says, if he has looked at Dr Google and read the real scare stories.

Maybe he is depressed - irritability and moodyness are symptoms. Maybe he just needs to talk to someone. Do you have a rheumy specialist nurse? Perhaps she could suggest someone. Maybe someone on the forum knows where to seek help.

Hugs - know exactly how you feel and I wish it wasn't so xxxxxxx

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Thank you so much xx your reply makes sense and I agree with everything you say. Xx I will ask my consultant for advice xx

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Good girl xxxx

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Certainly caused ructions in my house when I was first diagnosed. Then again, it was also a relief because I'd been going to bed so early and generally disinterested in everything, which was more emotionally scary. We had to have many, many rows before I could get him to see how his anger and behaviour were affecting me.

Are you stable at the moment? When I stabilised, a bit, I've tried to spend a bit more time with mine - going for walks or visits to places at the times I can do it (daytime really). And of course I said he is free go out when he wants (within reason...).

Your husband's request for more fun is reasonable. Taking things out on you isn't. In fact, the stress and misery can make us much, much worse. Take care and protect yourself in the first instance xx

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I am newly diagnosed with lupus sle and polymyositis. Still new to everything. Hopefully once I feel better things will improve. Xx thank you so much for your reply xx

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I can understand how you feel, my partner says he loves me & wants to marry me yet his actions say otherwise, he tells me i'm becoming bone idle but the truth is it's just a bad day or week. He thinks that because of my health issues I won't be able to carry a baby to full term (the scary thing is he might be right), he thinks I have no right to be tired because he's the one who works a minimum of 50 hrs a week. It doesn't matter how much I try to explain that I may be exhausted during the day but when night comes I can't sleep plus the pain I get stops me from sleeping too & just being in pain so much is exhausting all by itself. He's the one person I want support from & if I say that to him he starts going on about how much he works, I tried to explain it's not financial support but emotional support I need from him but this just causes an argument. I've started just keeping my mouth shut because I don't know if I can handle how sad it all makes me. I wish I could give you a miracle cure all for this but unfortunately if there is one I haven't found it yet. Xxx

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I understand how you feel this is awful. Men can be very selfish at times. I Am learning to keep my mouth shut too because he thinks all I do is moan. 😭

Big hugs and kisses xx

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Yes they can but if they get a cold then there dying & you have no idea how horrible it is to feel like that!! They can quite literally forget your the one with a auto immune disease who struggles on in a day to day basis. (My apologies to any men who don't act like this) xxx

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Mine's just had 2 months radiotherapy for very early prostate ca. Which led to some urgency, dysuria, fatigue. All I said was "Welcome to my world..." and you'd have thought I'd hit him!!!!

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I'm not entirely sure it is "just" selfishness - they truly don't "get" it quite often. I'm not excusing them - it is appalling and amounts to emotional abuse at times.

I have resigned myself to it - not a lot of choice after well over 40 years and I would have a lot to lose now doing anything else. But it upsets me greatly.

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I totally agree that's it's not just selfishness & your completely right he doesn't get it but at the same time I don't feel like he trys to get it & that's what really hurts. If he tried but still couldn' t understand then I would at least appreciate the fact that he tried. I know a lot of people who don't understand but try to & there just friends! Xxx

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No - but what I meant is that it is - to a great extent - a man thing. Colleagues of my husband when he was a clinical scientist told us how wonderful he was with patients. I and the girls (one now a nurse and the other a paramedic) just laughed because we'd never experienced it. But in truth - the nurse one is fantastic with patients. With mum and other family members who are ill - not so much.

Often we are simply too close. And they are scared - in all sorts of ways. As I said, it doesn't make it right and it hurts.

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I'm sorry if this sounds horrible because obviously u love him but if someone told me I was one idle with what we are dealing with I'd seriously be considering my future with them??!! And putting pressure on u for maybe not being able to carry a baby full term that's not fair.

I'm not trying to be horrible but u have to be happy too and not just keep quiet so u don't upset things (them!)

I think I'd rather be on my own than with someone that won't even try to understand things. I only work 2 days a week and feel guilty but that's just how it is and it's prob not gonna change so we have to just get on with it the best we can x

I'm just talking generally, not meaning any unkindness to anyone!

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I don't think your wrong Sara but at the same time I also think he may be dealing with depression but he refuses to go to the gp because he thinks there useless after all the let downs & mis diagnosis that they have given me. I truly believe there is an underlying problem that needs dealt with. Xxx

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What about bereavement counselling? You have both lost something and it applies as much for you as if it were a family death.

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I feel like a burden....

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Me too 😥

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Yeah me also even though I literally run myself to the ground trying my best to do everything at home so he doesn't need to lift a finger xxx

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My husband is great with my care after surgery(bc 12 years ago bl mastectomy implant reconstruction.. this past March DIEP flap reconstruction because the implants were HORRIBLE)....... hands on care, my hero....Now Lupus. He was concerned as I as being dx'd...yet, now that my RASH is gone, it is like I am all better......He always collapses after the urgent care is complete..then it is his turn for me to listen day after day after tohis issues...that is fine with me... if he would do the same for me...just listen JUST LISTEN xoxo

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