my husband has never understood or cared to understand lupus. Even though I have given him literature, invited him to hospital. Nothing. If I get fatigue, he makes comments that he'd like to be to sit around lazing! My appearance has changed quite a lot due to steroids, including 2.5 weight gain. I was depressed last year but managed to get myself sorted. However, my husband is now causing me immense stress & I'm worried I'm losing my marbles. He goes off on all night benders, switches his phone off, comes back between 1 to 3 days later. He comes home in a deshevelled drug induced state and then goes bed, refusing to look at me. Says I've become boring. He was away at his mums for 12days & got back yesteday. I didn't even see him. Dropped his bags in, went straight out, not come back!!! I'm sick of it. I stay awake all night worrying til my head feels it's going to explode. I love him, but know he's bad for me. It's been like this on & off through the marriage, but now he does it all the time.
My husband just doesnt support me - so I'm gettin... - LUPUS UK
My husband just doesnt support me - so I'm getting a divorce
I am so sorry to read your post! No one knows what goes on behind closed doors hun, I hope you have the strength to go with you obviously know/believe is the right thing for you. He is obviously giving you additional stress, which we all know is not a good thing for anyone, but definitely not for a lupie, I wish you well and hope you get through this stressful time for you as quickly as you can, sending love and spoons your way x
You poor thing, I know exactly how you feel, I was in a similar relationship many years ago, long before SLE arrived in my life.
I know how damaging such a relationship can be, even more so when you have health problems. At this time in your life you need to be surrounded by people who love and care for you, and try their best to understand your health and how your feeling.
It is so negative to have someone who believes you are lazy as opposed to ill.
Having worked with women for many years and due to personal experience I know how difficult it is to leave a relationship/marriage - but it sounds as though you are aware the time has come for decision making, and it most definitely is time to put yourself first.Staying awake all night worrying is only going to make your health worse.
If talking to your husband doesn't work and you choose to leave the relationship, be sure that family and friends know what you're going through so they can support you, and don't forget we are always here for you on this site.
All the best, take care of you
Slowmo
Thanks so much slowmo - it has been such a relief to come on here and have a rant and have such a kind reply from you. I really do appreciate it. I have been keeping a lot of it secret from my family as they would be totally appalled and tell him off. I have told a few friends about the difficulties I am experiencing and they told me to let go of him. If he didn't want to come home, why was I wanting to be with him. I guess when you love someone, you want them to love you back too and want to be with you. Its never that easy or straightforward though. The problem is that has been happening for years and it has escalated from 1 night, to upto three x
Agree with your advice, l too have been in a similar situation a few years ago, and all your comments are spot on , my family and my 5 children and my extended family have been my rock through some tough times , am am so grateful for them all and love them so much - the naff husband- long gone out of my life ha ha : ) onward and upward here on !
Sounds awful, it isn't enough that you have to worry about yourself, you get worried about him too, what with not knowing where he is, the way he treats you, etc. have you asked him what's wrong with him, why he is doing this to you? Do you think there is someone else involved, people tend to blame their spouses when they are making mistakes, to justify their actions and his comment about your being boring is suggestive of that. But who knows why he is behaving like this, it may simply be that because of your illness he has become more aware of his own mortality and can't cope with it.
As for divorce, that would be so stressful for lupus. You don't really need to do that immediately, you can just sit down with him and say you believe it is time to spend some time apart, both because it is clear to you that he wishes it and because you're too ill to cope with his erratic behaviour. Suggest that he goes at his mum's, given that he already spent 2 weeks there, just for few weeks or so, for both of you to see how it goes. Say that if he wants to speak to you during this time, it is up to him but perhaps is best not to, leave it to him.
And just use this time to rest, regroup, accustom yourself with being on your own, stabilise the lupus. Then deal with the divorce when you're ready for it. You need to think also what to do if he refuses to go to his mum's because being apart is really what you need, some peace and quiet without the duties that go with being married.
I'm so sorry you're going through this on top of not being well. I wouldn't rush into things, nor fight, at this point. Peace and quiet, that should be the goal.
Thanks so much purpletop, I often read your advice everyone and find it makes sense. The difficulty is that I am getting really sick now. My hair is falling out, my skin is a wreck and sjogrens is irritating the life out of me.
I have often asked him why he does it and he says he doesn't know really. Then, says he just enjoys going out and then gets carried away. I'm not sure if someone else is involved. To be honest, I don't feel that I really know him anymore. When life was good, i.e. I had a good job/health etc, things were relatively fine. He did excess back then, but he always came home and we cuddled up. Now, I barely see him.
Irony is that we have lots of things to be grateful for, yet he doesn't see that. He only ever talks about himself. We were in the process of renovating our lounge, dining room and kitchen in January. By mid-Jan he stopped. He has done nothing to progress it and left it all to me, saying he doesn't feel like it, and finding it too stressful. The house is a terrible state and I'm trying to chase people to get things completed.
He says that life would be different if we were to have kids, but that isn't possible right now. I had a miscarriage September and have not had a period since then.
I wish he would go to his mums, but she lives in wales and we're in cambridgeshire so, unlikely he'll leave. He still hasn't even come home. His phone is off.
I have had this situation going on for such a long time. Its like its become a habit for him. Thank you again xx
How's it going, has he called or come home? This is so draining on your already depleted resources, the not knowing where he is and the fury and disappointment that he is doing it to you who loves him. The thing is that each person has his/her own timeline in life, we are not always in sync with our partners. He seems rudderless and without willingness to move forward, whilst you are already on track to being a mum and a home maker. It is so sad, I'm so sorry you're going through this. All these events - the miscarriage, the inability to ave a period, the failed attempt o improve the house - these are traumatic to any normal person, let alone a lupus sufferer. It is a pity that you cannot distance yourself at least for few weeks - can't you stay with anyone for a week or so? You need perspective and sleep/rest. These decisions and the minutiae of bringing them to fruition (such as finalising the house improvements, discussing with a lawyer, talking to him, etc) need strength and energy, you need to regroup now. Try and think about it without letting emotion cloud the thought process - not easy, I know, but needed nevertheless. Focus on your survival and what you need to achieve that in the context of lupus. Be practical, rather than focusing on the hurt, think of the future and the likelihood of your man ever changing his spots and becoming the man you wish him to be and be selfish for a change, he obviously is. Take care of yourself, darling. X
Hi fuzzyrudd,
I agree with purpletop i wouldn't rush into things that are too stressful just yet, but understand that your situtation is not in the least ideal. When i was first diagnosed after months of very ill health my husband just kinda stuck his head in the sand and wouldn't believe that i was sick for life that this was incurable. It takes a long time to get your head around this sometimes years, it does sound like your husband is rebeling against it all. Maybe you should completely divert your attention away from him for the time being, leave him to his own thoughts and let him be responsible for his own behaviour. Take time for just you, channel your thoughts on just staying strong. Personally i'd be tempted to not always be at home waiting for him, if you can stay at family every now and then, give him a taste of his own medicine don't even bother ringing him and not worry about how the house looks at the mo. You have lupus the pace is different for us lot!!!! Stay strong and all the best
kezzie x
sometimes you can love someone to the moon and back but that doesn't mean that person is right for you and i believe(been there done it wore the t-shirt)if you stay in a relationship like that it will destroy you.i know how really hard it is too to walk away but i had too to safe myself.fuzzyrudd if you feel your in such a relationship it is hard to walk away but the hurt will pass but if you stay you will hurt for as long as you want.sorry for being a bit harsh x
Sorry but what a c**k! I'd like 2 c how 'boring' HE'D b if I stapled his balls 2 the table & pulled him a cm further away from said table each & every day!
Sorry if being in excruciating pain & confusion daily makes 4 a boring person, I apologise 2 the 'Lord of Fun & Games' on behalf of all those who suffer with this or any other illness.
What an immature jumped up little t**t! And I'm almost positive that he himself has such a winning personality & Adonis like good looks. Hmmmm.
He really gives decent partners a bad name.
Must pull myself away from the keyboard b4 I explode from the rage this absolute aphid has caused!
U're better off without the waste of space fuzzyrudd, concentrate on u'reself my darling. Sorry I couldn't b more grown up & diplomatic myself but this 'mans' (& I use the term very loosely) actions have really riled me
Big hugs & kisses 2 u though x
Love your positive and forthright reply, so correct , go girl, l too had to deal with similar kind of husband and trust me deal with him l did lol. Now it my 5 children and my extended family that are all doing just fine. it was hard to Divorce him , but so worth it in the end. : )
Hi am so sorry that your husband is not supporting you ,but honestly his attitude is only exacerbating your lupus I left my husband 22 yrs ago for the same reason I was never a malingerer had my own hairdressing salon two young boys and nothing was ever right for him My friends came to help me because they could all see what he was like but until he totally killed my love for him I hung in there Love conquers all haha Any how my doctors were amazing my youngest son who was constantly ill with his fathers tirades got better and between us we coped . I met an amazing man who after being on my own for six years and never letting my sons meet him until I knew he was right for us We all moved in together He is so supportive and loving and although I keep a lot of my daily pain to myself when I need him he is there for me. I can only say to you life goes on Find yourself first be in control and everything will work out for you I pray you have the strengths to see this through Take care
Wonderful story, been there done that wrote the bloody film and its sequel ha ha. Life is hard but its what you make of it and what you get out of it, we all deserve happiness and l will never let anybody deny me of my happiness !
Children????? While everything is so bad between you, please please take precautions. Life is difficult enough with lupus without adding a bad marriage and children to the mix.
My husband was unsupportive, thought and still thinks I'm lazy, I had a relapse 5.5 years ago and had to get get rid of the stress in my life and sadly he was the number 1 cause. My children were 2.5 and 6, I've raised them alone since then. Both are registered young carers as I haven't worked since either. My life got put on hold until June 2012 when I joined a few dating sites - I couldn't cope with looking after anyone else apart from myself and the children before and even now I only want to casually date but not live with or marry anyone - too much stress, would be like having another child in my eyes, lol, and my children miss out already.
Funnily enough I didn't even cry when we separated as I'd done enough of that within the marriage - lupus was the final straw. When you've finally had enough, you'll know, your pride and self preservation should kick in. Confide in your friends and family for moral support but remember they'll stop offering support if you repeatedly go back into a situation that's bad for you. Where's the love, hun?
Sounds like you both need time apart and counselling. Your situation is far worse than mine was. Try to find a safe and supportive space, give yourself time to think and valuate your life, aren't you with more than this? Then I hope you kick his sorry a#se to the curb but at the end of the day it's your decision to do what's best for you. No regrets, lifes too short, especially for some of us. Wish you luck, honestly. Xx
Ditto , sound advice also from somebody who's been there as you and come out the other side smelling of Roses . : )
You are all so strong and confident of your worth! I applaud all the comments, but when the drip of undermining behaviour and having the rug pulled on a regular basis and the private humiliation take their toll, it is hard to believe that anybody would believe that it wasn't your fault that you are in a situation that you would be appalled about if it was happening to your best friend, sister, mother .....
I don't have any advice, only that a break from it all is probably a good first move so long as you don't then start remembering the situation with rose tinted glasses and start to believe that it isn't that bad after all. Sometimes it is better to just get the locks changed next time he goes on one and let him sleep in the car or shed or wherever. Make him uncomfortable. Don't feed him, and definitely don't get pregnant to please him. He wont change after a baby is born, plus you will never be able to leave with a plus 1 in tow.
This is only my opinion, and as such feel free to ignore every word of it.
Most importantly, look after yourself. Use your energy on your own pleasures, whatever they may be.
Just remember your inner lion, get angry, but use the adrenalin positively to help your self.
I am sending you wishes of health and strength and of complete understanding of your situation.
Take care.
Love your sound advice so well delivered : )
I'm sorry to hear that you've not had the love or support from your husband. I can tell you that you will be better off and you deserve chance to find someone who will support you.
It is hard but it will get better. I have just split from my partner of over 4 years in part due to the complete lack of support, understanding or care about me having Lupus (plus he was selfish, self-centred, lazy, ignorant, rude to my family and taking all my money). In fact he just made me feel guilty that I have Lupus... Like I'd actually chosen to have this! It isn't easy, especially if you still have feelings for them. One of the tricks I have found is if you do find the strength to make the break from him, if you start with the well maybe it could be different, maybe it wasnt that bad, make yourself and sit and make a list of the reasons you made the break and it will help you stick to your choice.
Lupus already takes so much of your life and energy from you... don't let him take the rest.
Take care and best wishes.
Jennie
Sound advice, very wise . : )
((((HUGS)))) A reminder why Im still single - what an @r$€ he sounds!!!! Hope you are okay sweetie.xx
My heart goes out to you honey, big hugs try and keep your chin up, you have a new family of lupies right here to support what ever you do 
big hugs x x x x x
Poor you, it's sounds awful - No one should ever treat another person with such contempt...
His behaviour is not coming from a loving space - but a controlling, childish space.
You deserve much better - I have been in the past in a very negative relationship and was treated appaulingly, how did I let that happen?? - So, with massive help and support of friends built a life for myself and my spacial needs son on our own... Six years later (with UCTD and various other autoimmune issues) it was still the best thing I did for me and my gorgeous boy...
It was hard, but the life I have now is much better - AND - I have a fantastic new partner (not brave enough to live with him yet) BUT I have a healthy respectful loving relationship...
Be brave and do whats right for you...
HuGs Xx
Well done you and its also great that now you can advise others too because of your experience . : )
Hi Fuzzyrudd- I agree totally with all the above advice-What we have is a very draining illness and your hubby sounds as if he may have issues of his own that are getting worse (and whatever he says HIS ISSUES are not YOUR or your illnessess fault!!) - and worrying about these will only drain you more- and make you very ill. The last thing you need is a baby/pregnancy to complicate matters-if he cannot support you emotionally now can you imagine what he would be like if he became a father? He would probably run for the hills!! Babies change your life completely, and maybe you are not meant to have one with him for a reason? (God works in mysterious ways!)-Concentrate on YOURSELF- and everything will come right in the end. Life is never easy at the best of times-but with an illness like ours it is extra tough. Take Care and thinking of you x
Your reply and all the others to this Lady are so uplifting, only wish l knew you all 6 years ago when l was going through the same thing, l too came through the nightmare with the help and love of my wonderful loving family and circle of friends, and you are right God works in funny ways sometimes, he also helps those who help themselves .
My last relationship ended in part due to my ill health.
Health problems change the dynamics in a relationship and if it is already shakey it makes problems more pronounced.
When you are ill you can really do without additional stress. If you can keep the relationship together its worth trying for. Its probably not going to be easy to start a new one with all taken into account.
But stress will not be doing you any good and is no good for the relationship either.
See if there is a way that you can spend some time to work out your issues. If he wont set aside some time you at least deserve to know why.
I hope you can work things out. But if not you may be better on your own.
behappy 1.... I understand what you are going through exactly. I was until a few months ago in a relationship that sounds almost identical to yours for 12 years. I too have suffered with depression partly the lupus and probably if I am truthful because of my ex's behaviour. I can assure you that you are not losing your marbles. The all night benders, going missing for days on end I have had all this. The creaping about with the laptop and the facebook messages and texts. He also came to bed in a drug induced state and incredibly drunk on a daily basis. There comes a point where you have to say enough is enough. Your health is your biggest concern. You do not need a man in your life who will treat you this way when you are so unwell. It is no wonder you are going out of your mind, with worry all the time I have no doubt. I myself am approaching kidney failure for the second time now and will be on the transplant list shortly. As I started feeling less well and less able to do the things he wanted to do we grew apart. It is sad I know but everything keeps changing including us. I think the best thing you can do for yourself is tell him how you feel explain that he needs to make some changes to his behaviour or you're marriage will end. It was at this point that my ex packed and left. However I now have a wonderful man who treats me like a princess and even though I am not well he doesn't pressure me to do things I cant do. My future is looking bleak but for now I will seize every tiny piece of love and happiness I can. I hope you do the same x
Dear Vanessa, your message brought tears to my eyes because I can relate to it all. I know that my depression was predominantly caused by his behaviour. It's one thing coping with illness, but added to that is the overwhelming pressure and constant strain of the relationship. I gave him another chance and nothing changed. More benders. In fact he just got more arrogant as he earns good money and feels that he deserves it. It hit me when I was very poorly in and out of hospital. He hardly asked how I was and instead booked trip to Marbella with his mates and then following week went skiing. No concern for me. I am Livinh back at my mums which is a little hard at my age and but at least I had somewhere to go and fortunate my family are supporting me.
I'm really sorry to hear about your kidneys. Is it both or one?
I pray that your kidneys recover and that your health picks up. Sometimes things can turn around, and I hope that they do for you!
Good to hear you found a lovely man 
Thank you so much for contacting me xxx
I've been married 11 years and my husband never supports me . He'll do it only if I complain of my relatives because he hates them. When it comes to my son's school or someone hurting us he doesn't care. I'm 8 mths pregnant with 2nd child and faces everything with out his support. My 6 yr old son has been beaten up in school and he has nothing to say, he just leaves me to deal with all the problems. I have to go in school to speak to the bully's parents and my husband says he has nothing to do with it. If he really doesn't come with me I'm getting a divorce. I swear to this.
inie
To be honest, he's not really married, is he? He's a singleton living with a woman (even though the legal document says you are married).
Have you changed the front door lock yet? (That was the only thing I could think of..x)
What a selfish little child.
Mine is the same way. He just hasn't started leaving me more than 24 hours yet.
He called my a hypochondriac and broke my heart. I'm so sorry, I've loved and taken care of my husband in so many ways for almost 40 years. I was diagnosed last year and the three years before I was a hypochondriac then too. Screaming at me to find something out and yelling at me because it cost money for tests. Once he found out, I'm still not worth his time. I got sick and that wasn't suppose to happen and it is all happening to him. Not me..
not the pain, not the stomach problems, not the constant throwing up, not being able to get out of bed and if I do anything, it takes me 3 times longer than it would ever take him.
Yet I sit here all day doing nothing...... I am so damn lazy!
I am so very sorry for what you are going through. I am not just saying that. Nor am I one of those people who say that I understand, but really don't. They just have nothing better to say.
I have been through the exact same thing. Twelve years ago. The difference is that my ex was physically abusive and I had three young sons under the age of five.
Coming from someone who really knows. I know you love him, But love yourself more. Don't look at what you think you will lose, Think of all you can gain. You are so worthy of much more.
I wish you the Absolute Best. Sometimes you will feel like you have made the wrong choice But remember, you are the only one that can make you happy 😊. You are the pebble, spread the ripple effect. What I mean by this is that every single thing starts with you. And you have the power to expand your life, or suspend your life by choosing to be with someone who has little interest in your UPS and your downs.
Sorry for the long message. But I wish that someone would have told me this when I was where you are now.
You Can Do This. One second, one minute, one hour at a time. Until the days pass and you realize that you made it through to the other side.
Then, sigh.
Best wishes to you, my Sister.
Horrendous second appointment at rheumy!!!
was going to post a happy post but got deflated
Worried about my Hubby
Upset and Frustrated!!
Mrs Miserable
