My ill health and lack of support. Do I leave my DH over it? Please help.

[SoConflicted0126]

I have name changed for this and I will try and keep this brief.

I feel like I'm betraying my husband even by typing this out so please be gentle with me as I am so upset and confused by my feelings.

I’ve been with my husband for almost 16 years in total and married for 13 of them. It’s always been a happy marriage, we have probably fought less than a handful of times and he’s a good man and a great dad. Our children are 10 and 7.

The last 6 years of our life had been very difficult with the re-emergence of a chronic health condition that I have which had previously lay dormant for 17 years. As a result of my condition being dormant for so long it had never been a part of mine or my DH’s relationship until it re-appeared 6 years ago. Obviously I had prior experience of living with this condition and all the challenges that come with it, but it’s the first time my DH has ever had to be faced with it. It went from being a condition I had but never featured in our lives at all to then being one that has changed our lives significantly.

Fast forward to now and our lives are very different. I had to give up my career (and regular income obviously) and my husband has had to pick up the slack in lots of ways…. carrying a much heavier financial burden and taking on a lot more of the childcare duties and general “life jobs” that we used to split 50/50. It has really changed the dynamic of our relationship. I’ve gone from having my own level of freedom and independence to now bring reliant on him in so many ways. I miss the person I used to be and the life I used to have - sometimes I don’t even recognise myself anymore.

Amongst it all I have really seen him step up and he has been fantastic, in day to day life he is supportive and caring, he understands my lows, he never makes me feel like a burden and he works so hard to make sure that our life remains safe and stable. I cannot fault him in any way in that regards.

However, when I have my flare up of my condition (usually once every 4-5 months), the way he behaves to me, during and after them is so hurtful. He makes me feel like I’m an annoyance, that having to “deal with me” is a hindrance and he doesn’t hide his irritation with regards to how the knock on effects of my flare ups impact his life. It’s like he wants me to know he is put out by it all but in a very passive aggressive way, for example with huffy comments and eye rolls etc. He shows very little support or compassion, concern or care at all. When I have my events I am terrified and confused, (and it does sometimes end up in A&E presentations or hospital admissions) and the one person I should be able to feel safe with, is the one person who makes me feel awful about it. I have no control over this condition and when I know I’m going to have an episode I fear his reaction more than the actual event itself. The way he treats me during it/after it has made me cry many times. I can’t bear it. It makes me feel so worthless.

Then a few days later when I’m starting to recover and getting back to my normal myself (of sorts) he reverts back to being the loving and supportive husband. Full recovery can take a week or so, and I can be very emotional during that time, but for those initial 1-2 days after the event where I’m still very much not myself and unlike the wife he “knows” he can be so distant and dismissive of me.

I just don’t know what to do.

For 350 days of the year he’s wonderful but for the other 15 days he’s someone who makes me feel so hurt. I go over and over and over it in my head all the time and there’s now this emotional space between us because I can’t move past the way he treats me, or makes me feel about myself when I’m at my most vulnerable.

I don’t know what to do.

Sometimes I even think about leaving him just for the protection of my own mental and emotional well-being but between my Disability benefit and the odd bit of work I do here and there, I only bring in about £800 a month, and of course there are the children to consider of course.

I have spoken to a close friend about it, who knows my husband well and who knows how out of character his behaviour is during my flare-ups. She thinks he behaves like it because he’s scared, he doesn’t know how to deal with and because he knows he cannot do anything to help. He’s very much a practical person in the way that some men can be. They see a problem and want to fix it, and with this he knows he can’t do anything to help and has to just watch me suffer. To me though it’s like he just can’t face it, or deal with it and his “go to” is to get angry that it’s happening without considering the impact it has on me.

I want me and him to be ok.

When the days after the event start to pass and my loving and supporting husband and all his wonderful qualities start to reappear I wonder if I’m over reacting but my anger and frustration at him is always there in the back of my mind. I am constantly questioning myself as to why he treats me like that. Maybe I need to accept that despite all the wonderful ways that he’s stepped up to keep the family afloat and all the ways that he does support me, that the genuine love and care that he should have for me just isn’t there.

My condition isn’t going anywhere, it cant be cured, and the thought of me having to endure this kind of emotional trauma every single time I have an episode, for the duration of my life/marriage just seems unbearable and untenable.

I have tried to talk to him about it but he just doesn’t understand.

What do I do?

Gosh that’s a hard one. It sounds like you’d be giving up an awful lot if you leave him as he sounds fundamentally a good person. I believe your friend is right, he’s very frightened. My only suggestion would be to strongly encourage him to go for counselling to try and work through that. Good luck to you both.

Have you told him in a way that you have written here, to say that 'you appear to be angry and irritated at me when Im unwell, that you're inconvenienced by my illness, you appear to be angry that I have this condition and that sometimes I ask you for help or support'

Does he accept this or does he deny it

And if he denies it, whats his explanation for why he is huffy and rolling eyes. Whats his explanation for how you (anyone) would deal with someone who is ill or needs support. So what would he do for example if a family member of his, the kids, his mum/sister/dad was ill, had an episode in front of him and needed medical help and needed words of kindness, ask him how he would comfort them. And if that explanation is different to what he does with you, how does he explain that?

I think you have to work out whether this is something that he is frightened of and needs support to understand what is expected of him in these events

Or whether he is a complete arsehole that shows his lack of care in this way, because it doesnt seem to fit the way he is most of the time. I fhe is a complete arsehole that couldnt give a shit about your needs and being kind and compassionate to you then time to think about being on your own

I’m so sorry you’ve had your life change like this.

One of the reasons I left my ex years ago was how he treated me in the throes of hospital-level medical issues. It doesn’t matter how decent a person is the rest of the time if they let you down at your most vulnerable. You never feel as safe ever again…because the very core you isn’t safe in their hands.
Have you talked about his behaviour with him, and what it’s doing to your feelings/the relationship? How does he respond?

I am severely disabled following an accident.

if I had difficulty walking or pain got really bad my dh didn’t cope. I learnt to not rely on him, but he often made situations worse.

i am now divorced for unrelated reasons. It’s much easier without his stress and tension around. I decide that I think I can do this but not that and if I need to stop for a coffee to have a rest I can.

Really my then h wanted to deny reality, and when reality came crashing back in (eg I collapsed after he’d encouraged me to walk too far) he got really really upset and pissed off.

no solutions, sorry.

Rock and a hard place really.

He has truly stepped up and you have a good'un there, but if you talk with him about how his reaction to flare-ups makes you feel he might feel as though all the good he does is unappreciated.

Don't forget that at the time of these flare-ups he feels impotent to make you better, so will be feeling emotional and frustrated, and you yourself will be emotionally on edge and more sensitive - a two-way whammy.

I would count your blessings really and perhaps find a moment when out of flare-up to gently discuss this. Tell him you know how frustrating it must be for him and how much you appreciate all he does for you. I can see nothing to be gained by parting company, and much to be lost for all of you.

I wonder if, like me, you've always been the strong one in the marriage who carried and cared for everyone else? We went through something similar where I'd given so much in support of other people, including DH with all his issues, then, when I needed some support, he was nowhere to be found. It hit me that in the 18 years prior to my need for support, I had never actually needed any. I'd never had a chance to see what he was like in that situation. I just thought he'd be there for me like I was for him. His ability to care had never been put to the test.

It has taken a while and a few tensions but DH seems to have got there somewhat. I've also learned some new things about him. If he hasn't experienced it, he can't empathise. He's good at offering practical support, but hopeless at emotional because of the foregoing. I did nearly leave him over it at one point. We've got past it and our relationship is good, but I can't forget completely and trust is hurt.

Just sharing this in case something in it connects with you.

Can you talk to him about it? Tell him what you need? Make sure he doesn't turn it around so you end up comforting him (mine is also good at that). It sounds like he's generally a good husband but needs to learn how to step up for you during your flare ups.

I think if you left you would be losing far more than you would gain to be honest.

When I try and talk to him he gets defensive, raises his voice, tells me that he can't do right for wrong, it somehow gets flipped to be being in the wrong for questioning him .

Once I was admitted to hospital for two days, I was terrified as I hadn't been too far off an ICU admission, and when they let me go home and we were walking out the hospital he just kept huffing and puffing about how tired he was as we'd been sat waiting for 2 hours for the discharge papers, and kept telling me how fed up he is and wanted to go home. When we got outside he just stormed ahead as we walked towards the car park and I couldn't keep up as I still wasn't well and I was light headed etc and didn't even help me carry my things. He just walked about 12ft ahead of me, not even looking back to check I was ok and then got in the car to wait for me. The car ride home was a silent one.

The next day he went to go to work which would leave me alone with the two children (I wasn't safe to be alone, never mind alone with the children), and I said, "you aren't going to work are you?" - and so then he got angry and stomped around the house whilst trying to arrange for a family member of mine to come and sit with me whilst he went to work.

That was 3 years ago and I go over and over it in my mind constantly. I have never felt so worthless.

OP, your husband has a lot going on if he works full time and has a lot of extra chores/ caring tasks at home as well.
I expect your flare ups, unavoidable as they are, add an extra level of support required from him and he probably does feel tired and resentful as well as possibly overwhelmed and anxious about you, and this then shows in his attitude. Could you pay to have extra help at home during those times so he feels he has back up? Only you can decide, but if you love him l can't see how you'd benefit from leaving as he sounds like he's doing his best in a difficult situation.

I will flip the situation ever so slightly. I don't mean to upset you by any means but is there anyone that looks after him?
It sounds like it is a lot for him to be getting on with on daily basis and he maybe overwhelmed with everything. He must have massive weight on his shoulders that does not go anywhere. Does he have his own time? Does he have his own space? Does he have opportunity to care for his own needs?

Being a carer is very difficult and brings a lot of emotions.

I'm all for striking out on your own and not putting up with shit from men, however I think in this position, you'd be shooting yourself in the foot.

You have two children, and presumably would be looking at at 5050 childcare arrangment. Have a think about how this would look, and who would support you both finanically and practiallyu when you needed help.

I think that this is behaviour as a reaction to a specific circumstance, and if he can pull it out of the bag and be wonderful most of the time, which it sounds like he is, then you' need to work through this together. He is having difficult feelings, and they're coming out in unhelpful behaviours. Ideally he'd be able to check himself, but often we aren't able.

I'd find a couples therapist that you both like to help you work through this together and commit to a series of sessions til you feel you're understanding each other and communicating better. I would do this asap before resentment builds and distance grows, and there's more to unpick.

This is big life stuff, for you, and for him, and there are bound to be some edges that need dealing with. This is not the kind of thing that most relationships would just sail through with no outfall.

Ok, this sheds more light.

I would really encourage you to see a therapist together, and also individually.

I have really seen him step up and he has been fantastic, in day to day life he is supportive and caring, he understands my lows, he never makes me feel like a burden and he works so hard to make sure that our life remains safe and stable.

If this is true.

He isn't a carer - this is some thing that affects me for about 2 weeks out of a year, and for the rest of the time I'm completely functional and don't require care of any sorts.

He has a LOT more free time and time to himself than I do. He has hobbies, goes out with his friends, goes to the gym etc...... I don't have anything like that because the effects of my health, and my medication mean it isn't really possible for me anymore. In a way his life has benefitted as he knows that I'm always at home to look after the children which allows him to have more freedom to go out.

I don't resent him for that at all, its not his fault that my life has had to change to the point where my social life and independence has pretty much gone, but it does mean that he has more time to go out and do things because we no longer have to worry about finding childcare.

But he is a carer for you for the two weeks of the year where you find his behaviour difficult....

OP I actually think his behaviour during your periods of illness is abusive. You are a faulty appliance and he’s treating you that way. And his reaction to your questioning of his treatment confirms it.

I think we'll have to agree to disagree what the definition of carer is then.

That's not really that hard. I've been a 24/7/365 carer for over ten years. Two weeks a year? That's nothing. He may have anxieties that he could talk through with a counsellor or doctor but most people spend that amount of time supporting loved ones through the year anyway. Not saying the situation isn't stressful for him but, if two weeks is all that is asked of him and OP is functioning fairly well the other 50 weeks, he's got it much easier than almost every other carer.

This is exactly how I feel. Like an inconvenience.

I remember on one hospital admission they were booking me an MRI scan and planning a lumbar puncture as they they though I had encephalitis as my behaviour was quite erratic and my dad was at my bedside and he looked terrified. Meanwhile my husband was sat there rolling his eyes at me anytime I asked him a question. The doctors were discussing giving me some IV sedation and he asked them if he could have some instead so he wouldn't have to sit and listen to me. He was clearly embarrassed by me and had no problem hiding how pissed off he was. It was horrible.

Is this something you would be able to claim assistance with? If you are unable to work?

Are you able to give an indication of what sort of condition this is, we may be able to offer some support or solutions.

Thank you.

And those two weeks are spread out over 4 separate occasions across the year. So for 2-3 days per episode.

And even then, I'm still able to function, I still get up, look after myself, I'm not dependent on him for personal care or anything like that. I'm just not physically and mentally 'myself' and just need TLC whilst the haze passes.

To me that just a normal expectation of marriage?

Or just basic kindness and support you'd expect of anyone?

It's epilepsy. So its how I'm affected during my seizures, and how I feel for the few days afterwards whilst I recover.

EDITED. I HAD NOT SEEN OP UPDATES AS I WAS TYPING AS THEY CAME THROUGH . oP if you are not debilitated rest of time and he is not your carer, then I think his attitude is appalling and I would not tolerate that. He needs a very short time to shape up or I think you are right to leave.

ORIGINAL POST;

Hi OP, that sounds massively hard. I’m sorry.

im a little confused and understand that you don’t want to be too specific, but can I clarify? Because sometimes it seems he is super supportive, even when you are debilitated. But other times not. I’m thinking there are maybe two levels of debilitation?

Is it fair to say your condition means that you are long term debilitated, to an extent, on a daily basis (resulting in you having to give up work and being dependent on him for stuff daily and consistently, but you still basically presenting as ‘you’- … And through this ongoing state, he is loving, understanding, and stepping up.

but also as part of the same condition, you have more extreme episodes of 1-2 weeks every 4-5 months, when you are far more vulnerable, maybe to the point that you don’t seem you, and at these points his character changes to unsupportive/ dismissive?

If this is right, then it really does sound like he is not coping with something specific about your episodes, as it sounds like he does have the supportive character and love long term for caring for you when debilitated.

Can you tell us a bit more about how he doesn’t understand when you raise this? Is that that he denies his behaviour changes? Or that he doesn’t understand why it distresses you?

I think your friend may well be right, that he is frightened and this presents as indifference. Or could it be that there are things about your episodes that are triggering for him? This can be on a subconscious level, from his childhood. It might be worth asking him, really openly and compassionately (when you are well) what the experience is like for him during these episodes…really listen to understand. I would suggest doing that before trying to talking about your experience of them again.

Another possibility is He may actually be feeling angry at himself that he is powerless and this is coming out the wrong way. telling him what you need and how powerful his calm love is in those moments may help him realise he DOES have a role and not feel so angry towards himself?

Is it possible he is also really burned out? If he has been carrying the financial burden for six years, coping with the change to you and your relationship, doing the lions share of the work, extending love and support through it all, maybe these episodes just push him over the edge of compassion fatigue? Are there ways through this new life that you are able to give him breaks? Nourish him and his emotions? How much work have you guys put into how to make his role as carer sustainable?

It must be so difficult right now, and I can understand the trauma of having him fail you during these episodes. His behaviour sounds awful, and if this were what you got any time you need his help or were sick then I’d be instantly in the LTB camp……But as it really does sound like he has the compassion, love and strength of character to support you extensively and long term at other times, it feels worth exploring the specific experience of these intense episodes from his perspective as well as yours, to be sure you can’t fix it.

When you have talked to him before, was that during or immediately after you've been very ill, or at a time of relative peace? Im struggling to see how he's acting this way out of fear with your posts to be honest, he's being proactively hostile to you, not just fed up. Rolling his eyes and asking if he could have some sedation so he doesnt have to listen to you does NOT sound like fear of losing a loved one or carers fatigue to me.... as surely if he is such a good man, then he would realise how he acted and apologise? We all dont behave well when under stress, but the fact he isnt proactively recognising it and apologising makes me think its him being annoyed rather than love. Is he good at apologising/talking things through otherwise? I think counselling is in order too. So sorry you are going through this.

While I mentioned some trying times we'd had in my previous post, I get a migraine every month. At those times my DH is understanding if I order take out for dinner, offers to cook, gives me some space, so that sounds more similar to what you go through.

Yes, I think those short periods are a normal expectation of marriage. We promise to look after each other, not knowing what the future might bring.

I wouldn't just give up on your marriage. Your husband may be willing to learn, might need some reassurance from an outside source, might need some pointers for how to manage these times. Could you do things like freeze a few meals to cover these times, for example? If this is fairly new, it might take time to learn how to work as a team, but his attitude is not on and not kind or fair.

I have epilepsy, so its on the occasions that I have my seizures (maybe 3 or 4 a year) that I just need the extra TLC and support, which is when things go really downhill.

In between my seizures I am 100% functional and he isn't a carer of any sort.

The extra work he has to take on is the fact that he has taken on a promotion that pays more (to make up for my reduced income) which in turn means he has more work stress.

I gave up my full time job as the stress and pressures were exacerbating my seizures, so now I work on a part time basis....about 20 hours a week.

The fact I can no longer drive means he has to take on more of the day to day jobs that we used to share out 50/50.... like doing the big weekly shops, taking the kids to their activities etc, or driving them to hospital appointments. Things that I can't do anymore.