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?

I rarely comment on these type of threads, but I’m really, really sad for you OP. And astonished at all the excuses given for your husband tbh. His behaviour is just not acceptable. I’ll accept he could find it a difficult adjustment but to be horrible to you at the point you are at your most vulnerable is appalling- there are more days where you’re ok that he could discuss why this doesn’t suit his personal needs than be abhorrent to you and around you. I wouldn’t expect such atrocious behaviour from a teen.
I’m saddened as I have seen much much better ways for good marriages to be when one has epilepsy, or other conditions that make life a bit less smooth. Husbands can be human adults and manage this - it’s hardly like 24/7 care is it - life has adjusted of course but not really to his detriment - except you apparently take some attention from him a couple of days a year.
Leaving is a huge decision of course, but so is staying like this and what if you get anything else? Age?! What would he expect from you if this were reversed?
This is likely to not only further make your life difficult in general but may lead to more seizures with stress and fear - it may be managed hopefully better in time, but that’s for you and your benefit, not his. I don’t know what to suggest, but he needs telling not to be so embarrassing in front of drs at the least, but you need to do whatever gives you the most peace for your life.
Sending thoughts and wishes.

My first thought was that if it was dormant for years, then maybe that could happen again. Hopefully it will.

Could he go on a first aid course with you and the kids just so he could teach them what to do in a situation. It might give him a bit more empathy towards you.

Probably a stupid suggestion. I hope you are ok x

He seems both exasperated and repulsed by your seizures and is unable to hide his feelings so takes them out on you.

It's completely unfair on you and him taking on more responsibilities, particularly financial ones, when you epilepsy got worse doesn't justify or excuse his behaviour towards you.

What would living apart look like? Is it safe for you to have the children on your own or would you need to move in with other family members?

She has said that she gets PIP of £300 per month to pay for travel as she can't drive or use public transport.

Your contribution to OP's thread is tone deaf and quite hideous. The epilepsy has taken over her whole life. Unfortunately, bad things happen to good people like OP and notto the sort of people who begrudge disabled people getting a small amount of disability benefits .

OP - I am sorry about your health - and I am sure it is impossible for a person without such condition to understand the depth of effect on you, your MH and your life.

And it feels wrong to add a ‘however’ - but I think it needs to be added.
Yes - life is hard and it is unfair that it happened to you. However - I do think you are only seeing your side of the story, and massively underestimate how hard it all os on your H’s.

You keep saying that you only expect what a normal spouse should do, etc. And you imagine you’d only ever be supportive, etc - but in reality, you have no idea how you’d deal with the sort of life change and financial responsibilities that your H has to carry - with expectation that he carries it without any complaints, never tiring, and always be there with concern and TLC for you and the kids.
It’s an impossible task - and no one can do it the way you think he ‘should’ just do it.

You keep being offended by people saying he is your ‘carer’. Sure, he is not a 24/7 carer by your bedside - BUT he is always on, or on call - carrying ALL responsibility for the kids, you, himself, the household. He has to be ready at any moment to switch on to actual carer too. This sort of life is not only hard day to day - its also immensely draining, and it also affects MH.

You have your anxieties. You seem to blame it on him - and/or expect additional special handling and support from him on that.
I think that is also unfair and again - unrealistic.

You want to have more of a connected relationship you used to have. But it’s not really possible if you also want to constantly rely on him being ready to be your nurse, carer, MH support - each and every time you have your episodes.

And when he isn’t - you say - what’s the point of having a husband. THIS - i think is the crux of it all. Your expectation that it has to be about YOUR needs all the time. It can’t be like this in a marriage.
I think one person can’t be your only ‘go-to’ support whenever you have your flair ups. Your mother is nearby - it’s totally normal that she needs to be involved. And asking for help from other family or friends as well.
Your H also needs to raise the kids and work - and not only be on stand-by for you.

From your POV - what do you think os the point for HIM to have a wife? What does HE gets out of this relationship? Just because you have a chronic illness does not mean that his needs don’t ever matter.

It is hard for any stranger to really say much as we are not there in your life. But I do know that plenty of us have bot been perfect on many occasions when being tired and stressed - even when taking care of loved ones. And living with ling term disability is beyond challenging.

You really need to deal with your anxieties and resentments - as some of it, I think are unfair. You seem to take offence when he said he’d not have dated you if you were in this phase of your disease back then. Why is that surprising to you? Most people would not enter into a serious relationship with someone in such circumstances. Accepting and understanding this is important for you to see it all in a more realistic way.

Finally - if you do decide to split - think about reality of life on your own. Even if you sorted the financials and had the kids 50/50 - how would you actually manage? As it’s not safe
for you to even go out on your own??
You’d have to move in with your mom?

So - to summarise. Your H is not perfect - but i think he is doing more than most of the other men would have done. Many would be long gone. Realising and appreciating that may help you figure out how to stop feeling resentful at life and taking it out via resentment on him.
Leaving may sound like a good idea when you are emotional - but in reality, it’ll only make your life much harder

Just reposting this as it’s so bloody (and very sadly) true.

Some people must have really shit men in their lives.

I have asked for MNHQ via reporting the posts, to delete both my posts above as I could not manage to convey effectively what I was trying to say (it sounded different in my head!)

"show your appreciation"

This thread has been horrible to read because of all the PPs insanely pretzeling themselves to feel sorry for A MAN WHO YELLS AT HIS WIFE WHEN SHE'S GETTING AN EPILEPTIC ATTACK!

And he does this IN FRONT OF THE CHILDREN!

The man is a complete sociopath and we should be advising OP how to get out.

NOT encouraging herself to see herself as a shitty burden and feeling sorry for him. And definitely not encouraging her to APPRECIATE him abusing her.

JFC all this fucking empathy for this utter shithole of a man, it's SICKENING!

Agree @LouiseMadetheBestBroccoliPasta , the grumpiness when she was feeling better and they were leaving the hospital , was still horrible to read but the anger at a seizure coming on ...that is Ted Bundy level sociopathic

Horrifying OP has to live in fear like this at his anger of a seizure beyond her control ...... I usually spend dinner cooking time feeling sorry for myself, but today OP occupied my thoughts wholly .....

"i think he is doing more than most of the other men would have done"

Another fucking one.

The bar for men is in HELL!

He’s human too. He’s needy too.

You sound depressed - it’s absolutely normal to have crunchy moments in caring.

He didn’t bargain on being a carer rather than a husband, just as you don’t want epilepsy.

Be honest with each other.

"He’s human too. He’s needy too."

He is a sociopath who routinely YELLS at his wife when she's getting an epileptic attack. He does this in FRONT OF THE CHILDREN.

It is simply UNBELIEVABLE how people are excusing this piece of shit human.

So he rolls his eyes and huffs when you look like a seizure might be coming on....
The kids say they know a seizure may be coming when he looks angry....
He is distant when you regain consciousness (fucker).....

What might he be doing when you are in the unconscious phase of the seizure ?????????
I put that in caps first but it looked like I was yelling at you rather than for you...

What might he be doing when you are unconscious??? caring and wonderful??

What is the real use in the other 350 days of niceness ??? Someone pls tell me. The house is half hers, the kids are half his anyway.

Put in place a real support system, safeguards and everything you need for your wellbeing - then Kick him out OP, find your anger - I literally do not think I have said this to anyone on here, and yet I go against the tide on this thread to do so

My dh does what he has do when I'm ill but I dread it because he begrudges it and it does come out in little bursts of temper.
My dcs say its because he stressed. He doesn't cope with the slightest stress. He's also not one to talk about his emotions and can be quite cold at times. I know where you're coming from.

I wish I could advise you what to do. You've tried talking to him. Would he agree to marriage counselling? I suspect that'll be a no though. He needs to know how serious this issue is for you. Once he realises that it's a make or break situation then would he try to change his attitude?
He's making you feel like your episodes are a burden to him but it's unfair as there's nothing you can do to change your condition and it sounds like you're doing well generally, still working and running the house etc.

It's such a shame if your relationship is otherwise good but he needs to be careful not to gradually erode that with his awful behaviour when you need him the most.

@SoConflicted0126 you come across as such a strong person and it’s so unfair how you are being treated. Are you having counselling? I really think it may help you, along with some EMDR therapy with your anxiety. You should have access to both through the NHS. You need to have someone you can talk this through with. I’m so sorry you’ve had to withdraw so much socially.

With regards to your husband, I think you need to spell it out to him that your marriage is on the line, how he treats you is not acceptable. He needs to get some individual counselling and then maybe you could benefit from couples counselling further down the line. How he treats you is not acceptable, ask him how he’d feel if one of your children was treated by their future spouse, how he treats you. Initially I thought maybe he was scared and was lashing out, however the fact that you said he’s actually told you that if you hadn’t been in remission when you met he’d never have dated you shows he’s just being cruel.

@jsku you’ve made an awful lot of stuff up in your post. You either haven’t read all of OPs posts, or you’ve misunderstood or you have some sort of agenda/projection thing going on.

You keep saying that you only expect what a normal spouse should do, etc. And you imagine you’d only ever be supportive, etc - but in reality, you have no idea how you’d deal with the sort of life change and financial responsibilities that your H has to carry - with expectation that he carries it without any complaints, never tiring, and always be there with concern and TLC for you and the kids.
It’s an impossible task - and no one can do it the way you think he ‘should’ just do it.

It really isn’t an impossible task. Plenty of men (and women) do it. Everyone keeps banging on about the financial responsibility. In many families the DH is the breadwinner, it’s really not unusual and doesn’t require some sort of superhuman abilities.

You keep being offended by people saying he is your ‘carer’. Sure, he is not a 24/7 carer by your bedside - BUT he is always on, or on call - carrying ALL responsibility for the kids, you, himself, the household. He has to be ready at any moment to switch on to actual carer too. This sort of life is not only hard day to day - its also immensely draining, and it also affects MH.

Well, you’ve just made up that the DH has all the responsibility for the kids. He does all the driving but other than that it sounds like OP does the majority. And OP has clarified many times that when she’s unwell he does not act as her carer (and certainly not at other times).

You have your anxieties. You seem to blame it on him - and/or expect additional special handling and support from him on that.
I think that is also unfair and again - unrealistic.

You think it’s unrealistic for a spouse to expect “special handling and support “ when they are acutely unwell? That’s really sad. I can’t imagine what sort of relationship you have if you have a partner.

You want to have more of a connected relationship you used to have. But it’s not really possible if you also want to constantly rely on him being ready to be your nurse, carer, MH support - each and every time you have your episodes.

Again, you either haven’t read all Op’s posts or you’ve misunderstood or are just ignoring what she’s said.

Your expectation that it has to be about YOUR needs all the time. It can’t be like this in a marriage.

I think OP just wants her husband to not belittle her, get angry with her, humiliate her in front of others, treat her as if her illness is her own fault. This really really is not too much to expect in a marriage

Your H also needs to raise the kids and work - and not only be on stand-by for you.

Again, you’ve made this up.

You seem to take offence when he said he’d not have dated you if you were in this phase of your disease back then. Why is that surprising to you? Most people would not enter into a serious relationship with someone in such circumstances.

I love my DH and there is no illness he could get which would make me regret choosing him as my life partner. We have supported each other through some terrible experiences and would not let an illness come between us. Again, it’s sad that you expect so little out of relationships.

Agree with many others, this thread is heartbreaking. Partly for @SoConflicted0126 situation and partly for reading all the posters who expect so little out of men and marriage.

Thank you everyone for your continued replies and all the support and understanding.

With regards to how things would be in relation to the children if we did separate, they would be fine with me. I am alone with the children all the time and I am their primary carer.

In some ways it’s more hurtful that he’s a great husband 95% of the time because it shows how intentional his behaviour is when he switches. If he was cruel towards me (with regards to my epilepsy) on a daily basis and that was just the kind of man he was, I would be able to accept that he’s just a dick. The fact that he can be a lovely and supportive husband to me when I’m healthy and functioning, but then turn on me when I have a seizure….well, there’s just something sinister about it.

On one occasion of him being angry during an episode of me having some absence seizures he told me that he “couldn’t cope with this anymore”. He drove me to A&E as my seizures dont always stop without intervention and even though I was tearful in the car because I was confused and upset about what was happening, he kept barking one word answers at me whenever I asked him a question. In A&E he didn’t even talk to me at all. He just sat there in silence and scrolled through his phone. I felt completely and utterly alone.

I was a child who watched my father abuse my terminally ill mother.

People supporting and sympathising with this man must be fucked in the nut to think this is ok.

OP please, please get some support, this isn’t okay and it isn’t normal. He is being abusive. You need to see someone for your mental health because unfortunately this man is making things 10 times worse for you.

His parents are looking after the children for us this Friday evening as we are going out to celebrate an anniversary so maybe I just beed to bite the bullet and talk to him about it. I know it’s not ideal to talk about it whilst we are having a meal out, but it’s not often we get a chance to be alone and it’s certainly not a conversation I want to have when we are home with the children.

Yes - life is hard and it is unfair that it happened to you. However - I do think you are only seeing your side of the story, and massively underestimate how hard it all os on your H’s

I don’t know what went through your mind when you wrote this abuse apologist bullshit. There is no side of the story that explains or justifies what he’s doing.

There's some load of ableist posters on here

As if a non-disabled woman who was being emotionally abused 5% of the year would be told anything other than to leave (apart from the MRA plague of course)

As if anyone would find anything remarkable about a non-disabled mother working part time for family reasons

God help you if it's due to disability though!