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?

My instinct was the same as your friends. He doesn't know what the hell to do, he can't help and he reacts I na shitty way because he's overwhelmed.

However he needs to talk to you and you need to agree to a plan based on what you need from him.

OP I remember my mum and I entering a small little shop we lived right next to , when I was like 8 and it was the 80s and my mother asked for fabric in an unusual shade (mustard she called it), the guy attending us at the shop went looking a few times through their shelves for the exact shade she was wanting ...and then suddenly froze ...he proceeded to have what i know now was an epileptic seizure -it lasted a few minutes and his colleague at the shop helped him during and right after and then attended to us.

I still remember the empathy, kindness , understanding , gentleness with which his fellow shop assistant helped the guy out (my mother tried to help but was in practical terms useless in the situation but at least showed appropriate concern, and empathy too). For a long time, I felt guilty that my mum and I had caused his stress by my mum saying nope not yellow, no thanks not orange, it has to be mustard yada yada - and I used to run past the shop to not remind him of the incidence again in case it triggered him.

As a child, If i had had to see the man's colleague rolling his eyes, being dismissive and angry and upset at his seizure - I genuinely think it may have traumatised me as an 8 year old.

And you should feel that, because it's normal to do so when he bahaves so appallingly towards you.

Not as such and certainly nothing in relation to me, it's just him in general.

He's the one in a group of friends who always has to be the loudest, the most out-going, the one with all the jokes, the one with all the stories etc etc

He likes to be 'that' character.

I know that's not him, but its how he wants to be perceived.

He can't just be himself because he won't show any kind of vulnerability. He puts on this outgoing front to a lot of people. Very few people know the real him.

Op - do you think you know the real him? My worry would be the glimpses of nastiness that leak out under stress is who he really is.

This thread has been such a painful read. Op you are a person who is worthy of love and support. Marriage is about bring there for each other no matter what. You don’t have to make anything up yo your husband. You didn’t choose your illness. You didn’t force him to marry you and be there for you in sickness and in health.

I think you should look into therapy for yourself to try and help you come to terms with this and make some concrete decisions on how to proceed. You deserve someone who is there with you throughout your pain. Someone who cares about your wellbeing above all else. Someone who isn’t cruel to you when you are at your most vulnerable.

I don’t doubt that there may be deep-seated reasons for his treatment of you that even he doesn’t comprehend, we are none of us perfect and we all behave badly at times. But the fact that he doesn’t want to acknowledge or work on this speaks volumes. The only way this situation can possibly improve is through couples counselling. He needs to get to the bottom of this and stop the nasty behaviour. You will also need help to understand if you can get past his cruel treatment of you and learn to trust him again - if may not be possible and that is perfectly valid.

You deserve so much more and so do your children. I hope that you can extricate yourself from this awful situation.

Saying he’s perfect most of the time is doing a lot of work here. Seeing as he won’t discuss his behaviour the only way it can be perfect inbetween seizures is if you don’t challenge him about his abuse and pretend everything’s ok when it’s not.

How Perfect would he be if tonight you insisted on a conversation about it? You’ve already said he won’t discuss and raises his voice. This man isn’t perfect, he’s abusing you when you’re at your most vulnerable.

I'm scared that the way he behaves when I have the seizures is the 'real him' and the other version is just a show he puts on for me and has done for our whole relationship. That's what scares me.

Anyway, I have to go and pick my children up from school now.

Thank you to everyone who has replied, it has given me a lot to think about.

I won't be able to return to the thread until tomorrow morning, but thank you.

OP, you can leave your marriage for whatever reason, or no reason.

That's it.

You sound like you want to leave your marriage. You will be a single person supporting yourself and your children, while also being disabled. Your children will be your carers (because you can't leave the house alone).

You can choose that life. Get your ducks in a row.

Why people are minimising this and saying what a poor man he is is completely beyond me.

Op I’m sorry, I’ve not read the whole thread; but I wanted to say that I have been in your dh’s position; almost exactly the same. Except I was compassionate and supportive, not nasty or abusive. Your story of his comment in the hospital is heartbreaking. We worked together on any issues, supported each other and talked things through. I don’t know what you can or should do about it, just know that it shouldn’t be this way 💐

I think that's where you need to start your conversation with him.

I realised the other day, I'm not scared of having seizures anymore in terms of hurting myself, just in terms of how mad you'll be with me.
Of course I'm not mad at you.
Then why do you treat me how you do? You roll your eyes and huff and puff and minimise what's happening. You have my back I never way until I have a seizure and then I feel abandoned. Or worse, like you're annoyed you can't actually abandon me.

I do think many people would consider him your carer in that he's picking up the stuff yo u ant do. He might not physically provide yo u are, although if you're unsafe to be alone then I guess anything in his life is always at risk of being cancelled as you need him home with you to care for you and the kids. But yo u said he's picking up extra work to cover your cutbacks. You said a lot of the house stuff falls on him now. So whilst I think Carer isn't quite the right word, it's unfair to suggest his life is the same as if not better than before, as you have

Oh and to add, yes it’s scary; but that doesn’t mean you get to treat your partner like shit. Even if you are ‘neurodiverse’.

Six years ago, life as you know it changed for both of you. You have lost your independence and good health, he has had to take on a carer role as well as be a sole bread winner. He didn't chose this life, but he does it because he loves his family. When you have a flare, he struggles too and is stressed and overwhelmed, doing it all and worrying about you. Are you showing your appreciation of what he does or have you started taking him for granted?

You say 15 days vs 350 days - that is such a short amount of time. Mostly, your relationship still seems to be working. It is just strained by the flares. Who would do all this amazing stuff for you and your DC if you left? Would the children live with him and you with your parents? Or would your DC become child carers? I think what you've got sounds better than either of these options.

Stick with it, show your appreciation and seek out better treatment options.

He sounds ridiculous. The only assistance you need after a seizure is with the children which he should be happy to do as they’re his anyway!!
I live alone and have uncontrolled epilepsy which means I can’t drive, I don’t have a carer. I’m also Schizoaffective & autistic.
If I have a seizure and end up in ED, once I’m ‘recovered’ although still confused and post ictal I’m put in a taxi home and sleep it off for the next few days.
I work part time 3 days a week and get PIP.
I would like to meet a nice man but my ideal thing would be to live separately!

I think couples counselling may be the way forward for you OP although I would seriously get the ick with his immature behaviour.

I will say it’s unfortunately true that a lot of men still have a stigma around epilepsy- I hope your DH is not secretly one of them.

That's a really hard one OP - I agree it sounds like he maybe can't cope with you being so ill. So horrible for you but as he is great the rest of the time I would try and work it out

I'm surprised he doesn't understand... maybe a therapist? Couples therapy is expensive but this is exactly what it was made for and it sounds like it could save your marriage.

Good luck!

Oh OP, I feel tearful reading this. This is so sad.

Those feelings of trying to make things right are feelings a victim has towards their abuser who they want to keep happy.

Treading on eggshells. Dreading the circumstances when the abuse starts.

No half decent man would ever want his beloved wife to feel like this.

Would you eat shit 15 days of the year if it meant the other 350 days you got the finest steak? The only amount of abuse acceptable in a marriage is 0.

Besides the point because the OP has said she wakes up anxious and fearful every day because of the way her husband behaves. Her self worth is impacted every day.

How low is the bar for men here?

I do wonder. 15 days in a year. You can be laid low with flu for this long.

How low is the bar for men here?

I think it's on the ground to be honest, and if that's too inconvenient for them to step over, just get a woman to make it up to them by taking it away completely.

I am really struggling to see why so much empathy is being directed towards the husband. He hasn’t posted asking for support, she has. And she has described in detail how frightened she is of his behaviour.

He can start his own thread if he wants. Support that centres the comfort of the stronger party over the vulnerable one is morally upside down.

I get it (despite my username) I get it and I understand and struggle with the same thing. I will try and reply more later but wanted to say that I very much struggle with similar and it’s hard to reach out and talk and ask for emotional support because I feel like I have to show gratitude and thanks for him putting up with me.

I very much understand the feeling lonely, I’m often told to think if it from my husbands perspective, I spend almost every waking moment thinking of it from his perspective and telling myself what a burden I am, and how he’d be less irritated and much happier if I wasn’t sick, that I’m worthless because I can’t do things for other people like I used to, while also dealing with losing so much of myself.

I feel like asking for patience and to allow me make some adjustments to take part in life with him, is translated as me picking at him and saying he can’t do anything right. I’ll post more later when I’ve read the full thread but if you want to pm me then please feel free to.

This is one of the most upsetting threads I've read on here in a long time.

I won't say what I think of your husband because I think you already know.

I'm just so sorry you are going through something as life-altering as epilepsy without the support you should be able to take for granted from a truly loving partner ❤️

Yes, @BoxingHare people saying “well if he is supportive 350 days of the year, he’s a good man the rest of the time etc etc” what if on those other days he was punching her and giving her black eyes or breaking her nose? Kicking and breaking her ribs? Is this still acceptable as he’s just usually such a supportive DH undergoing so much stress?

Fuck that shit.

im very sorry I can’t scroll back to see who made the Ted Bundy comment but I love you for that as it sums it up so well to me. I actually feel this guy is showing sociopathic traits the more you post @SoConflicted0126 I also think when the tide of the thread (hopefully) start to turn as people understand more what he’s actually like, it will be harder for you to read. I’m sorry.

I have absolutely no doubt a caring role in whatever/whenever situation can be hugely stressful. I actually think “in sickness and in health” being quoted piously can get fucked - it’s okay saying these things (again I’m sorry I can’t see who said the walk a mile in my shoes comment) until you live it. I would never judge my DH if he couldn’t cope as it’s so much to cope with and I would understand if he couldn’t.

BUT if he couldn’t cope, he would do the decent thing and get support as a first start, he would never ever act the way this DH does. Treating someone the way this DH does is the equivalent of a punch in the face and breaking your nose, it’s just the kind of punch that breaks your spirit not your bones.

I have other conditions as well as epilepsy, but epilepsy is the one that makes me most vulnerable, in all sorts of ways. Mentally as well as physically. There is something about the ever constant unreliability of each moment PLUS the seizures and slowly becoming more conscious (whether it’s focal or TC etc) and realising you
don’t know what’s happened, don’t know where you are or who you are or what you’ve done. It’s terrrifying and horrifically awful, I can’t even put it into words. Someone (and the person who is meant to love you the most!) being cruel to you at those times in the way OP described, the huffing and the eye rolling…they are not a good person fundamentally. They’re showing their unvarnished self, probably as they know you are “blurry” (sorry not right word, my vocab has gone to shit along with my spag) and they can treat you this way. And if anyone else notices, like a doctor or a lot of MNers, they’ll just excuse him and smooth it all away because he’s stressed and he’s a good husband the rest of the time.

@SoConflicted0126 please PM me if you would like as I know this thread will be upsetting. I have had a lot of support from my epilepsy nurses, epilepsy action, a befriender etc who actually know what it’s like. If you don’t want to PM, I can put some links on the thread, just didn’t want to overwhelm you. I also don’t want to say how different my DH is as it would come across as very insensitive, but my DH is also a man under enormous stress and pressure caused by me (I have weekly seizures and waiting for surgery so it’s bad) who would never act the way your DH does as fundamentally he is a good kind person. I fear your DH isn’t, and this “rest of the time” business can get in the bin (as my DC would say).

i feel from your posts you need support, and your DH isn’t a support, he’s your problem, just as much as the epilepsy. It’s very very hard for you. If you reach out for support, it’s definitely worth going through an epilepsy support group or charity as it’s quite specialist and hard to grasp if you have no experience or understanding of it. (Shit DHs aren’t hard to understand grasp, the epilepsy I mean, and your own situation) You’re not alone, some people do understand

And I didn’t even address the guilt (god the terrible guilt, the “burden” feeling) and the loss of your previous life and independence and smallness of your new life. I understand that too.