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'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.

I'm so sorry but I think that you're right. I can't imagine what it's like waking up and being more worried about your husband's reaction to a seizure than the actual seizure itself. That is awful and I can't believe all the people here defending him. He's obviously a huge part of your anxiety and the longer you stay with him the worse you will feel. Consider a life without him for your children's sakes if not for your own, it must upset them when they see him getting angry at you.

It really upsets my eldest child. They are very protective over me when it comes to my epilepsy.

Obviously your Dad has witnessed this behaviour, have any other family members? Has anyone apart from you actually called him out on it and if not why not? He needs to be told how abusive he is being. Make him read this whole post and thread if you think it may help.

Both my parents will have been witness to his dismissive attitude.

But I imagine that they keep quiet because they don’t want to rock the boat or they put it down to stress like some posters on here have.

They may just see him the same way that the majority of outsiders do (including other posters do): that he’s the protector and provider who supports me through an illness. People see what they want to see. I could never tell my parents the truth about how DH treats me during and after my episodes, I’d be too embarrassed.

I’m sorry but even if he was stressed, that doesn’t excuse his behaviour. I’m so sorry no one has called him out on it, you deserve so much better. Please, please get some help, either through counselling or even Women’s Aid, you shouldn’t be going through this alone.

Is it at all possible that your perception of his behaviour is skewed during your episodes? Could the fit be effecting how you experience his facial expressions for example? I know very little about epilepsy, i’m sorry

Thank you. I will consider getting some counselling.

Well I’m off to put the children to bed so I will gather all my thoughts overnight and see how I’m feeling in the morning. I don’t think I will sleep easy tonight but I’m glad I reached out as although some people do think I’m expecting too much from my husband, I do feel reassured that other posters can understand why I feel so let down and hurt.

In fact, I think there’s a lot of naivety about how ill and disabled people are treated. If people haven’t experienced either they assume that everyone would be nice to them all the time, and unpleasantness is an outlier, whereas actually far from it. It’s not like it is in the movies.

I’ve been seriously ill myself and I know that people around you don’t necessarily handle illness or disability in an ideal way. Some just drop you. Some are a mixture of nice and critical. Some are unfailingly kind and patient. The latter are probably a minority though. Getting ill is distressing and stressful for the people around the patient as well as the patient themselves and some people don’t deal with it well. Some get very stressed by it particularly if the load on them is increased and some are just not cut out to be a nurse.

Many people living with an illness report that at least some people around them weren’t that nice to them. That includes medics as well.

So what can OP do other than try to get through to him, and if she can’t well - then it’s the end of the road.

Oh stop with the “ableist supporters”.

These are married women and women in long term relationships that have to everyday; navigate the complexities of life, marriage, love, commitment, children, illness, ageing, empathy, compassion, relationships, break up, domestic abuse, MH….need I go on? And dare I say it, have a wealth of advice to offer.

For you to just write off their responses in such a way, as if everyone that doesn’t see what you see are “ableist supporters”, is very tidy, simple, black or white and possibly harmful way of seeing things.

This does not negate the real pain OP is going through, she is seriously considering ending her marriage. Many opinions, perspectives and levels of advice are welcome, even yours!

It doesn't sound like his behaviour is coming from a place of worry it sounds like it's coming from a place of contempt.

There has been some truly insane man-pandering on this thread. Revolting.

OP, you are most definitely not expecting too much from your husband. It is definitely NOT too much to expect that your partner treats you kindly and lovingly when you're ill, ESPECIALLY if you are often and seriously ill. It is NOT unreasonable to be aghast that your H screams at you when you're ill. There are NO reasons where this should be countenanced.

You are curtailed by your illness, yes, but you do NOT have to put up with this horrendous behaviour. It's also not good for your children to be witnessing this. There is a way out.

And we should ALL be helping you get out, not counselling you to put up with abuse.

I think the suggestion of a PP, to get counselling for yourself, is a good way to start: it might help you quietly work out how to go forward.

OMG.

Did you read this:

"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."

Or this:

"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... My dad, and the Consultants looked at my husband in absolute disbelief and in that moment I felt so ashamed so be married to someone who could be nasty to me in front of other people at a time when I was clearly very unwell. It was horrible."

Or this:

"During one occasion I was talking to my eldest about the warnings I get before I have my seizures and the changes he may witness in my behaviour and he actually said, "Oh we always know when a seizure is going to happen because that's when daddy really starts getting angry at you."

Do you still think that she's simply imagining his behaviour?

I'm not sure why you have posted "ableist supporters" in quote marks several times, that's not a phrase I used and I'm not even sure what it means.

In my relationship we've had our health problems, nothing on the scale of epilepsy but neurodiversity, MH, chronic pain... We have other problems but thank fuck no one's abusing the other over our state of health.

Being a bit grumpy and tired is perfectly understandable, even saying "this isn't a relationship I want to be in anymore" is fine although obviously upsetting. Emotional abuse is never acceptable.

What a horrible post @jsku talk about victim blaming.

@SoConflicted0126
It seems your husband is acting the role of the good guy until you have a seizure and then the real him comes out. You said he really cares what people think of him so he keeps his unpleasant side hidden until he’s under a bit of pressure and can’t control his emotions. Some people only show their true selves to their immediate family and everyone else just sees their ‘acting performance’.
I hope he will listen when you try to talk to him because he sounds avoidant.

This is where I struggle to believe he is a good man. Who sees their wife get upset and their reaction is anger, rather than concern!

And who hears their children saying such things and brush it off. How can your children be more aware than he is! You also are telling him that you are confused, dazed and struggling and need help and his response is having a strop and saying what he does isnt good enough. Honestly next time he says that, I would say with the way you act in the moment then no its not good enough and its having a detrimental effect and he is the only person that can control his actions and the way he acts going forward will tell you all you need to know.

Im sorry but he does not sound like a good man to me.

It sounds like he doesn’t like you very much.

@SoConflicted0126
Can I ask - how do you see your life set up if you do separate? If he is an involved father, as he does sound he is - he'll have the kids 50/50.
How will you handle living on your own - can you safely live on your own?

Please think through practicalities of what you want to achieve before you have this conversation. I do get the feeling reading through your posts that what you really want is not breaking up, but changes in your relationship. Or am I wrong?

If that is the case - I am not sure that saying you want to separate as a way of forcing change in him is not the best way to go about it.

If we were to separate I imagine it would be the typical set-up where the children would primarily be with me in the week and him at the weekends (alternate ones I imagine if that’s how things usually go). He would probably also see them the two evenings a week they do their activities as he accompanies them to those.

I am safe to live alone and the children are fine to be alone with me.

Of course I don’t want us to separate but nor d o I want to “force a change in his behaviour” (as you said). I shouldn’t have to force him to feel care and kindness to him. If I have to force someone to feel that way, or act that towards me then it’s not anyway, so what would be the point?

As I said in a previous post, the fact that my husband’s natural instinct isn’t to want to care for me and comfort me when I have my seizures shows there is something intrinsically wrong within our marriage and how he feels about me, and that’s the problem.

Whatever you decide about your marriage OP, stay or go - no rush, get some counselling first and make the decision at your pace , building your new life before you actually leave is the way to go.

Gently let him know today that you would prefer he not come to the hospital next episode - you, your dad, your mum and your consultants should not have to listen to his absolute man-child nonsense in a hospital room about how he would have IV sedation rather than listen to you while you are having an episode - he has no understanding, no empathy.

A decent person would at the very least , leave a situation where they knew they may come across as unempathetic , go to a coffee shop across the street and get themselves under control and in the right mindset before coming back - even pleading his own exhaustion and burnout and not coming to the hospital would be better than this.

Man child is too good a term for him because even children behave with empathy.

Thank you. I have a lot to think about. I’ve got work today so I will check in this evening. I have decided I will definitely speak to him when we are out this Friday and start the conversation rolling. There’s no point avoiding it because it feels like it’s occupying my every thought so I may as well just be open with him whilst we have an opportunity to be alone. It gives me a few days to think about what I want to say too. At least in a restaurant he cant just storm off which is what he would probably do if I spoke to him about it at home.

Offer to mind the car keys in your handbag. I think your trust in him needs caveats.

OP, I agree that speaking up is a good idea, but be prepared for him to get cross at ‘being ambushed’ on a rare night out.

You say he storms off when you raise it at home, so expect it to go similarly badly in public, despite his need to ‘put on a good show’

It may be an idea to let him know before you go out that you have some important things to talk about, as well as having some notes written down in case he talks over you. If you can ask the restaurant to seat you in a quieter area where he won’t be distracted by other groups of people and can focus on your discussion, please do.

Good luck 💐

Having to care for somebody with epilepsy can be very difficult ( My twin sons have it, now adults) The OP has not witnessed herself having a seizure, she suffers it, he has to deal with it and his own emotions which can be many, often mainly fear.
The OPs friend has suggested that her DH's reaction is probably down to fear and I know with my DC'S I tended to be very matter of fact which I think might have come across as uncaring. I am not uncaring but each seizure was gut wrenching and frightening for the whole family.
The OP must decide what to do but I think she needs to discuss it with her DH.

Good morning @SoConflicted0126,

This is honestly one of the saddest things i've ever read on Mumsnet and some of the unempathetic responses have blown my mind.

Not only do you have to deal with such a serious and traumatic disease like epilepsy, on top of It all you live in fear of your husband's vile reactions when you are helpless.

You are sick approx 2 weeks a year. That is just not carer territory so i entirely disagree with all the abuse apologists on here telling you that you are some terrible burden for your husband. Talk about kicking someone when they are down.

THIS IS NOT YOU. Yes, a spouse may get frustrated with us, lose their temper etc but this is not that. He is being deliberately cruel to you when you need him most. I'm sorry but this is not a good man. Like other PP's i think he is giving you anxiety.

I suspect that your conversation with him won't achieve anything if you have already tried and been dismissed múltiple times. If he was really a good man he would be mortified at his cruelty. At BEST, your husband is an avoidant who cant handle his emotions and so his emotions switch off and he goes stone cold when he sees you in distress. The problem is that to get past that he would need to work on It (and its super hard to change) as the nervous system shut off has become automatic. At worst, the performative aspect of his behaviour with others and contempt like behaviour to you when you are sick honestly makes me question if he is a covert narc or a sociopath.

Re the "perfect times" if someone offered you a drink of the most expensive champagne in the world with a bit of shit mixed in- would you drink It?