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 went on a few forums - to meet people who had the condition to try and understand - way back in 2007 when I first found out my husband had been diagnosed with hot water childhood epilepsy as a child - apparently one of the rare benign forms of E that one can outgrow and even taper off meds.

I remember the people I met on the forum - I still remember thinking what a wonderful, deep, creative, artistic, funny, intelligent and articulate sounding group of people they were.

A number of them sounded like empaths - the worst victims for abusers !

In fact I would seek specialist support before you speak to him.

Honestly, your DH sounds like a sociopath and his behaviour is undoubtedly abusive. As well as tonic clinics (average once a week) I suffer from focals (multiple per week, different types) I recognise the patterns you talk about - we really need a word for that specific feeling of doom pre ictal as there is no other feeling like it, terror or horror don’t even come close. I say it’s like thr feeling you would get if your saw your child run into the road, that blood freezing fear. I also recognise the constant repetition, my DH I am sure gets tired of answering yes, that the cats are in.

My DH is a kind person at heart. He has never acted the way your DH has acted. If he struggles he talks to me or a friend to offload and I think he has also sought support from EA. I feel, well I know I must be a huge burden but my DH has never lost his temper with me or been anything less than kind, comforting and gentle and reassuring. This btw for people who don’t know, is a screenshot of how tonic clonic should be responded to, and this is for “strangers”. When your own DH can’t even treat you that way, something is very wrong.

I have told him countless times that I know how much my epilepsy has impacted on his life and how much easier his life would be if he didn’t have to worry about me and carry the extra burdens etc and that I would understand if he didn’t want this life, but he persistently tells me that we are a team, that he loves me and cares about me and that he doesn’t care that he has to work extra hours and drive the children round more etc because he does it for us and to do whatever it takes to keep me well. And he sounds so, so genuine when he says it and like I said, he has never made me guilty about the way our life has changed.

But this is why it’s so hard.

Do I tolerate how worthless he makes me feel when the seizures occur because the other 95% of the relationship is fine?

The problem is that even during that other 95% every time I look at him I cannot stop thinking about how he treats me when I’m at my most vulnerable and I don’t know how to more forwards from that.

I belong to two online support groups and they are a Godsend.

What I have noticed is that so many of us have such low self esteem and low confidence as a result of our condition (because of the shame and social stigma that is attached to epilepsy) that it does make us tolerate poor behaviour because we don’t believe we are worth more. We do see ourselves as a burden to others and so we accept being treated as such.

I am so glad you have such a supportive husband - he sounds wonderful.

@SoConflicted0126 - I know I keep saying but counselling for you is a must, you need to speak to someone. You need a place to vent.

Personally I wouldn’t wait until Friday night to speak to your husband. If you can, try and talk to him tonight or tomorrow night. I know you’ve spoken to him before and you say he doesn’t listen, is it worth a different approach, could you write him a letter? Lay it all out, explain how much you appreciate what he does most of the year to make you feel loved, however how he reacts in the moment when you suffer a seizure is really affecting you, how it makes you feel. If you feel comfortable doing so even let him read this post. He might digest a letter better, not feel he has to react straight away which might make him defensive. Let him read and digest.

As a side note, your children sound amazing - they just prove what a wonderful Mum you must be ❤️.

With respect - I do think there is an element of denial in the way you are looking at your life. If you do not ever go out for the reasons you list - you can not in the same time say that you'll be absolutely fine staying on your own for extended periods.

And, no matter how much you say that you are totally ok to be with kids on your own for extended periods - a good lawyer would pull it apart if it were to come in front of a judge. In addition - a Family Court Judge would not consider it a positive that your would rely on very small children for your safety when you are on your own with them. To say more, it is possible that the Judge would consider it to be highly damaging on small children's MH to carry such responsibility on their little shoulders. Children should not be responsible for their parent's wellbeing.

OP - please do talk to a solicitor before you make any moves. It is frustrating, but the limitations on your life can't be dismissed with protestations that you are ok. Denying the reality does not change it.

But the other 95% of the relationship is not fine is it?

The other 95% of the time you are constantly trying to "make it up to him", constantly anxious about his reaction if today's the day you have a seizure, constantly dreading every single interaction and action you take.

The 95% is awful! The 5% is abominable.

As for him constantly TELLING you nice things. Words are cheap. My husband told me every day he loved me, and a lot of the days he was lovely. Eventually I left because his abuse on the days he said and did horrible things made me a shell of myself. I could barely speak, had terrible anxiety and dreaded every day.

Don't forget OP his words when you're at your most vulnerable are nasty, horrible words. Put those words with his actions and you see his true self. And together they speak volumes.

Stay with him till the kids are more grown so he can't fight you for custody of the kids using your health as the reason. Yes he may well do so.
Just stop being in love with him. Act loving when needed only to use for him the stuff he isnt completely useless at. This is more than he deserves. He's shown you his naked face , that survival of the fittest , jungle law applies. Survive and stay strong and play him at his own game

That feels like an inappropriate and intrusive question @DexterMorgansmum . If your DH displays abusive behavior start your own thread.

I’ve caught up, I’m so angry with him on your behalf.

He’s ignorant and cruel 🤬

Sorry, will ask for that post to be deleted, you're right @pikkumyy77

PLus I already know the answer

No excuse for abuse
No excuse for abuse
No excuse for abuse

That’s great OP, but bear in mind that being a young carer comes at a cost, particularly if you and DH split and they become your primary carers. Either way they may benefit from being in touch with Young Carers associations. They need support with providing support.

@DexterMorgansmum I can’t quote as it’s been deleted, for what it’s worth I didn’t have a problem being asked the question @pikkumyy77so you don’t speak for me there!

Anyway, don’t mind you asking the question don’t worry. Short answer - no. Being an abusive prick makes you abusive.

Slight disclaimer - when I am post ictal and confused I can sometimes lash out and swear as I am scared and very confused, not aware of what I am doing. That’s in the immediate post ictal phase, never ever in the rest of my “normal” life. Because I am not abusive. I hope you get the help you need, have you contacted Womens Aid? I’m sorry for your troubles, it’s a good idea to start a thread for support.

Thank you @EpilepsyAndVulnerability , that was very useful. Very grateful.

I feel for you OP because I also have a chronic condition that was in remission when I met my husband, so he didn't really have any sense of what it meant. And I had also had a previous relationship breakdown because that man couldn't cope with it, which I found really devastating. But I do think you are minimising the challenge for him. I worked as a live-in carer for a while and by far the most challenging job was for a lady with focal epilepsy. (She also had some physical disabilities which is why she needed someone living in.) I found the complete change of personality, confusion and unpredictability was difficult and upsetting to deal with. It was much worse for her of course but I found it a very challenging condition from a carer's perspective, and can only imagine it would be much more so with someone you love and otherwise rely on emotionally. Even if you know rationally the person has no control over what they are doing/saying it can still be very hard to stay calm. I think it would be great if you and you husband could have some focused counselling.

Do you have any good websites or links that defines what a young carer is, or what criteria determines that a child is considered to be a carer for their parent?

I genuinely don’t understand how my child potentially needing to call an ambulance for me 3-4 for times a year (or call their nan to come over) means they would be seen as a “Primary Carer” of me.

Apart from having a seizure 3 or 4 times a year I am a fully functioning perfectly capable person who does not need to be cared for.

This is why there is so much stigma attached to the condition and why we are still made to feel ashamed of having it. It’s so frustrating that the antiquated attitudes people have with regards to epilepsy are still alive and kicking. Apparently not only am I a crap wife who is expecting too much of her husband just by asking for some kindness and support, but I’m also not a fit mother, I’m not safe to be alone with my children and I will be responsible for causing them long term emotional damage due to them witnessing me have a seizure in their presence. It’s so depressing.

I think I need to take a step back now.

I was prepared to take on board comments about me not taking into account my husbands feelings, but I am not going to sit here and read comments that discredit me as a mother and imply my children would be safer, or better off without me being their primary parent and insinuate that I am putting them at risk.

Thank you to everyone else who has been supportive, I really appreciate it.

"I found the complete change of personality, confusion and unpredictability was difficult and upsetting to deal with."

When you looked after this lady, did you scream at her when she was having one of her attacks? Did you do it in front of her children? Did you ice her out for days afterwards? Did you roll your eyes and sneer when she was trying to answer questions, having just come out of a seizure?

Two things can be simultaneously true. So it can both be true that OP’s situation is difficult for her and difficult in a different way for her husband and children.

OP should decide for herself—will decide—what makes sense to do. But I hope she takes on board warnings that a) her children will be very much affected by being her carers (not her prime carers, of course) and b) her husband and the courts may not see the situation the same way she does.

Very much agree with this message. I can't understand how it can simultaneously be true that your seizures effect you as described, and that it would be safe for you to live alone with your children. It is a lot of responsibility to put on them and it may be better if they were to primarily stay with their Dad if you did split.
Sorry op, this is so tough.

Your DC would currently lightly tick the box of young carers at the moment and if they were offered to attend a “support” group (more of a fun social space along with others a similar age) that would be a positive for them.

So long as you have family & friends around who are able to come and stay with them & you as and when needed, no they won’t become your primary carers.

The support they would benefit from as young carers would be that safe space to talk about how they feel if they wish to. Sadly at the moment with the way your DH behaves when you are unwell likely means they would very much benefit from that 😢.

Does their school have a home support worker? It would be good to ask if they can keep an ear out for them and their concerns.

So most of the time you're taking care of everything at home, doing all the work in the home and working 20 hours a week and while that is happening he has a very easy life, goes to work and does some driving but has it pretty easy in general and you take care of him, the home and your 2 kids and he's happy?

Then a few times a year he has to look after stuff for a few days at v short notice and change plans and adapt and that causes him to behave like an absolute cunt as soon as there is an expectation that he needs to step up?

Is he acting up because he's an entitled twat who expects an easy life and gets angry when life suddenly isn't centered around him? Or, is he suddenly incredibly afraid that something happens that he can't control or fix and it sends him into some kind of spiral? What's he like in general when something unplanned comes up? Can he adapt easily to changes? Has he had experiences in his childhood of being a carer for someone else/ expected to cope on his own in a frightening or unexpected situation? Is the thought of you being unwell triggering something for him? Perhaps there's an underlying explanation for his reaction, doesn't excuse it but might give you a starting place to understand him.

You say when you speak about it he gets defensive or argues but perhaps rather than telling him how much it hurts you, try asking him how he feels when you have a seizure, when you are in hospital etc. Try to listen and unpick what is happening for him, rather than immediately telling him how it affects you. This might be best explored with a relationship therapist to try and steer the conversation if you just end up back in the same conversational ruts.

It may be better if their dad the eye rolling abuser, was their primary carer?

In which world?

Leave when the younger one is 12/13 @SoConflicted0126 / OP so the decision is not up to some random Judge in a good/bad mood and whoever can afford best legal help

I hope you stay on your thread - but can understand taking a breather

I have my own thread where a few other posters also like me have said they are waiting for the kids to get older - my son turned 16 this year and I have waited 10 years if not more - not too long at all now , but some days I still falter in courage and make excuses. It's an additional safe space if you decide to play the long game and wait too for a while - biding your time. A lot of us on this thread really care about you though , and are here for you. I think a lot of the harsher posts are also well meaning re the kids, legal battles caused by abusers over custody , are real.