I Am feeling so down and lonely. I wish my husband would prioritise me before his job. He keeps saying to me that he can't take too many days off to take me to the hospital. He doesn't understand how hard it is for me to cope with this disease and not having anyone else to count on. We moved in a new area 3 years ago and I don't have any friends and I don't have any family support too. He is the only one
He keeps saying to me that I don't need him for every single appointment. True but I need him for mental support. I need him so I know I am not lonely fighting this. Am I being unreasonable? Please be honest with me if you think I am wrong. Xx
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Tulipano
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no it is not unreasonable to want support, but lots of work environments are very pressured these days so it can be difficult to get time off too. I wonder if you could have a search around for volunteers who may be able to help, ask at the gp practice perhaps? I know it is isolating when you move to a new area, have you had a look for local groups, maybe a coffee morning or book club, something gentle that would let you join in as and when you can. Hope you find something that helps, take care T
I can relate to your issues with your husband as mine finds it very hard to support me when I have got yet another issue wrong with me. A couple of months back he came and picked me up from having a general anaesthetic at the hospital, dumped me at the front door and then went off to London for a couple of days leaving me to not only sort myself out but also our two children. Charming! This is how he has always been - he seems to get angry at me for me being ill, I don't know if that sounds familiar? I have tried to talk to him about it but all he does is make it about him and how he finds it difficult to deal with and how he is stressed by being the only one bringing in an income into our household yet again. I think I must have used up all his sympathy early in the relationship. He's not a bad person I must stress but he just can't deal with chronic illness. I think it would help if there was more support out there for people like our partners to help them understand and for their worries and stresses to be understood as well.
I second the idea about trying to do whatever you can to increase your circles of support. I don't have family locally either but have got to know some people through children/school. I have also found things through my local library - I've recently joined a knitting group and am going to go and have a coffee with someone from that next week. If you aren't well enough to get out, then use the computer - I have joined a few forums on there and you can actually sometimes make real life friends that way too, providing you are careful of course. Having something in common such as an illness means that straight away you are connected and understand the issues the other person faces. Your local council may have something like 'health ambassadors' who might be able to give you some more pointers as well - it's worth asking around just to see what's out there.
Sounds very familiar - my husband gets very impatient with our children and all the 'Kid stuff' has always been my job. At the moment I am getting up at 6am to get them ready for school and he just lies in bed until 7:30am and then only looks after his own needs. Sounds like they are cut from the same cloth doesn't it. Mine is too old and set in his ways to change now.
Many men are like that - they are basically scared. They don't do being ill themselves very well and if it is you you might as well have tried to cut off a leg! And they have a very twisted sense of "my" jobs and "your" jobs.
Just a silly example: we have a camper van with a shower/toilet room. I often use the on-board loo in the middle of the night (rarely), early morning or bad weather. He has always refused to and makes me empty it. He carries it to the disposal point and then watches me do it. At present he is having radiotherapy for prostate cancer and we are using the camper van to be close to the unit - half and hour drive instead of one and a half hours each way. He needs the loo at night because of the therapy - but guess who had to empty the loo yesterday? And I haven't used it this "holiday"!!!! He just didn't see why he should take his turn!
Mine improved a bit (not a lot) after I had a rather scary drug reaction episode that meant I was in hospital for 3 weeks instead of 3 days. He turned up every day at every visiting - and sat there, speechless. But he was slightly more helpful when I got home.
I don't really know what to suggest though - I just sit and have a really good swear. It makes me feel a bit better because it takes the anger down a bit.
Do you have an empathetic doctor or nurse specialist who would talk to him?
And you really do need to find a community locally to belong to - is there a support group near you? Or have a look on the forum stuff - there is a way of finding if anyone has listed where they are near you. Or start a post saying the area you live in and asking if anyone is not far away.
It is well known that men can not take stress very well. Basically, I think men are the weaker sex and selfish. I watched my mother needing my daddy and he would go off play golf. I had to call him from Houston and tell him to go home (they lived out side of Austin) and take my mother to the emergency room. If one of their neighbors hadn't called me, she would have died.
Personally, I cannot understand why all women aren't in same-sex relationships. I wouldn't have much to do with men if I wasn't one myself.
Being empathetic, like @PMRPro, I could say that a lot of us don't like stuff that we can't fix. It makes a lot of us feel useless and so, angry. Being asked repeatedly for help is OK, but if nothing gets better, it's like being taunted for being no good at doing the very thing that we are supposed to be good at i.e. fixing stuff.
Evidently, I have NO IDEA how to sort all this stuff out....but I guess we are not all doomed to remain sexist, emotional illiterates forever. Becoming a househusband to look after my daughter when she was little was the greatest thing that ever happened to me. I recommend it to my male friends whenever I can...
But yeah....try to make other connections? Local groups that do stuff that isn't too physically demanding - a local singing group? A reading group? Hope things get better soon x
Thanks for that Whisper . . . you have given me some insight there which is helpful. I can see that my hubby would definitely be frustrated about not being able to 'sort it all out'. I'm afraid I come from the Venusian school of thought where we like to talk out all our problems to reach a solution whereas he's from the Martian school where you give things a good whack to fix them and then if it's still broken, it's thrown into the bin!
Hey, I’m sorry you are feeling like that, it seems to be a sadly common thing with lupus...feelingly ridiculously lonely, I know how you feel too, it was only last week that I think my husband started to understand what I’m going through, I’m not yet diagnosed but got lots of the markers...
I ordered a load of the leaflets from lupus UK for myself and ‘left’ them out only to find that without forcing it on him he picked them up and started reading, he also came to the lecture on Saturday even though I’d tried to put him off!
They are a funny species! Sometimes it’s denial on their part that something is wrong (especially if on the outside you look well?!) and I think sometimes they like to feel like they are making a choice rather than being told what to do, they often dig their heels in!
I’ve found drip feeding how I feel has been better than waiting till I can’t cope and then it all coming to a head?!
I don’t really have any family support either, parents have too many of their own ailments for me to start telling them mine, but I have to say the support groups local to you might give you the outlet you need? They should be listed on the Lupus UK website. Best of luck.x
Don't feel lonely. We are all here with you. I experienced the same as you. I had to face hospital, pain, doctors all by myself because husband was working in another country for 5 month. Long story. But what kept me going was this site. I check this more then any other social media. Actually, I don't even do social media. I found a reply or like keeps me happy because I know there are people who understand. I know is not as good as someone next to you. Believe me I cry everyday and my thoughts were the same as you. I couldn't walk because both my my feets were attacked. I couldn't shower or brush my teeth because I was in so much pain. I had to top myself up with pain killers and take myself to the doctors. Sitting in a&e by myself. No visitors when I was admitted into hospital. Wasn't nice and would hope I don't have to do that again. But it pasted. It will past. We are all here for you. Xx
Ugh, what a drag. I empathise, although I'm lucky in that the Dutchman has a very understanding boss who will let him get out of trips and things where I need to go to appointments. I don't really know what to recommend as far as meeting people goes - I don't like people, and I have nothing in common with people my age; talking about diets and whatever was on telly last night (retch). The only thing 'social gatherings' does for me is remind me how little I seem to have in common with the human race! Maybe there would be other ways for your partner to support you? I know it sounds weird, but maybe you can have him there on Skype or some other form of 'conference call' to add details as needed? Do you have your spouse there to give insight on your trips or are they there as your strength in the background? I ask the Dutchman to give his own input on things I might have missed, and make him a part of the appointment rather than just a chauffeur, which also seems to help.
I wish you luck, and hope you find a solution - I had a man who cared very little about my illness: he's called an ex-husband! I don't need that kind of thing in my life, but I know that's easier said than done.
Gosh,I thought it was only me with an unsupportive partner. I was well when we got together(10 years or so ago) but as my condition(s) have deteriorated he has become more and more irritated ,impatient and generally annoyed with me.
He's accused me of being lazy. I was a nurse for 35 years and now medically retired. I am increasingly frustrated with myself for not being able to do very much on a regular basis. Having him around just aggravates the situation even more!
He's not all bad,infact he can be quite caring and kind,but has become less so as time has worn on.luckily my 23yr old son lives with us and is far more supportive! I feel guilty Anough without having to explain myself to him.so now ,when asked how I am,I usually just say ' I'm fine' but I'm not a very good fibber and actions, or rather lack of them! Speak louder than words.he actually called me a hypochondriac the other day ,I was speechless.l know he knows I am actually unwell as he's discussed it with my 82yr old mother.so I guess it's the denial thing at play again.
I go to all hospital appointments alone,he will pick me up after any invasive procedures but like sjogibesr so OH just dumped me at home and went straight back to work. A cuppa would have been nice!
He's getting increasingly fed up with the fact that we very rarely do things together anymore ,we used to love walking and city breaks.i feel even more guilty and do try to make an effort but God do I pay for it afterwards. I think he thinks I'm just being selfish but in truth it's just me trying to keep body and soul together. We're going out with friends tonight... Better have a nap now!!
Good to know I'm not alone.happy weekend to you all.xx
Being a man I am not justifying your husband, he needs to give priority for his work since money matters. Your treatment may become expensive. Sometimes insurance may not be sufficient.
But no doubt you require support, others may not understand our feelings, physical and mental weakness, believe in God almighty, read religious books especially Bible which explains how God helps those who are sick.
Believe that our problems are not a disease, only a change in our physical condition and try to manage it.
I too get very lonely as my hubby is away all week, luckily I have a couple of friends who I see fairly regularly and I make a point of going to the hairdresser once a week but I can sometimes go from Monday to Friday without seeing a soul! Don't see anyone from my neighbourhood it can be soul destroying. My hubby was supposed to be retiring this year but they've asked him to stay on for a couple more years so frustrating! I used to go to the odd lupus Uk meeting but they had to disband it as everyone was too ill or old, is there one in your area you could go to? Perhaps there's a coffee morning you could get too occasionally where you might make some friends or volunteer to go and see lonely people through age Uk or some such. I know you can't manage a regular thing but maybe once a month? Try asking your lupus nurse ( if you have one ) if there's someone nearby you she won't be able to tell you but could ask the person to get in touch if they wanted too. Hope you find some friends soon
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Off work feeling guilty
feeling a bit overwhelmed and lost
Feeling of lightheaded 
Feeling tired of fighting!
Feeling sorry for myself :(
