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?

And to add to this brilliant question, if you were sneering , rolling eyes, huffing, irritated during episodes - or even unable to move from fear and flight mode to caring mode - how did you morally justify continue staying in the carer role when you were not actually providing real care? @consideringachange

Just to be clear OP, I have never said you were not a fit mother. There are many parents living with disabilities and health conditions whose children look after them when needs be. It’s not the case that any of them are unfit parents. There are somewhere around 120,000 Young Carers in the U.K.

While you’re with your DH the young carer role is less relevant as he is your primary carer. But if you split up it would be worth researching the Young Carer role and support services in the local areas.

In short - a young carer is anyone under 18 providing ongoing care and support to a family member with a disability, physical/mental health condition etc.

This may cover tasks regularly or periodically - such as cooking, cleaning, shopping, contacting doctors, managing medication, giving emotional support.

It’s recognised that these responsibilities can affect the young person’s education, wellbeing, and social life. So in the UK, young carers have the right to an assessment of their needs from local authorities.

Support can also be accessed via dedicated organisations or through schools or local council services.

If the government felt children should not be responsible for their parent's wellbeing, why would they put in place awards contextual widening entry to some of the best universities in the UK to young carers ?? why not just take them away from otherwise loving caring wonderful parents because of the illness/disability that requires some caring X days a year out of 365 by a teen or similar age.

I think this applies to toddlers and babies, what you have said - OPs older one is 14 in 4 years , 13 in 3 years, 15 in 5 years.

She has already said her parents are nearby and she has family and friends nearby. why are people still assuming the kids would be primary carers. The only fear should be is the abuser twisting facts in court to get the kids to himself, because he is a man child narc.

The primary carer is the person/s who provides daily responsibility for unpaid care and support. OP’s parents, family and friends are not in that role Unless say OP’s mother moved in to take care of them all.

The government extends contextual offers to young carers as it recognises the impact that the role may have on education and social life.

Bearing in mind some parents are more significantly disabled than OP and have more intensive care needs.

No of course I didn't do any of those things -- though I did once get annoyed with her when she was shouting at me and I hadn't yet realised that it was the start of a seizure. The lady I was looking after was not usually aware that she was having or about to have a seizure, whereas OP evidently does have some warning. I'm not excusing the OP's husband for behaving badly. Nevertheless I found this particular condition very challenging and the experience has stayed with me although it was nearly 25 years ago now. I think I would find it very difficult if my husband developed this condition, especially if it had not been part of the relationship from the start.

I agree.

I have a chronic illness too . ExDP refused to even read the diagnosis letter. He didn't like anything that took attention off him.

OP, have you got an understanding GP? Have you tried talking things through with them? Mine was very helpful .

@SomedayIllBeSaturdayNight @pikkumyy77
do you have any experience with epilepsy in your personal life?
My husband has epilepsy, it started 3 years ago.
He is the best dad that I could ask for our daughter.
His epilepsy nurses and consultants are happy with our daughter being cared for alone with her dad.
We have safety measures in place and he is perfectly capable.
She is not his carer, she is aware how to call for help, we have family nearby and my husband has a watch that alerts us and he can also call us when he gets an aura/start of a focal seizure. Unfortunately for her it has been a part of her life since she was 3 but at 3 they learn at nursery about ‘people that help’ and how to call for help….being aware of addresses etc as to be honest at any time you could have an accident etc (you could even develop epilepsy out of the blue and it’s very common to have 1 seizure in your lifetime) the child may have to call for help.

I’m so sorry, @SwanLake35. Your poor mother.

I was going to suggest to you @SoConflicted0126 that his cruelty to you is being powered by the rocket fuel of embarrassment, but you seem to have figured it out for yourself. I’m very sorry about the awful situation you are experiencing.

Could your consultant signpost you to a counsellor/therapist that works with patients in situations like yours?

I have read that it is really common for men to leave their wives /partners when their wives are diagnosed with cancer or other serious illnesses so I'm sure that hospital staff have experience of supporting women in your situation.

I'm baffled by the posts supporting your husband and excusing his cruel behaviour. They obviously haven't read all your posts because they seem to think that he goes to work, does all the childcare and everything at home when that isn't the case at all. He does less around the house and with the children than before your illness got worse because you now work part-time and you have picked up a lot of the things that he used to have to do.

If anything OP was in denial about how abusive her husband is during and right after seizures, see her first post about how guilty she feels to even be posting about her DH

And now we've loads of people well meaningly equate the abusive episodes to stress from the carer role, even possibly. How she is minimising her dependence, how scary her seizures might be for him , yada yada.

There are you tube videos - 2-3 minute long , showing people suffering a tonic clonic or focal seizure and what their carer does in response. Videos by EA and such. These confirm that the NHS, social care system, the police, the courts, anyone sensible would not let off her husband - at the very least they would first monitor him to establish facts and then an action plan. He deserves to have cameras put in for authorities to check he is appropriate during these times.

Tell your GP that this is how he behaves during, OP. They will have social care (as your kids are observing his behaviour, and therefore victims too) , on the phone and popping over to your house to talk to your husband. You can even say to him you mentioned it innocently to ask if that was normal or something and you did not expect it to escalate. Let him throw his toys out of his pram, he does that anyway.
I told my GP about abusive behaviour from H in 2023 - someone came home and spoke to him about right/wrong , acceptable/unacceptable - in front of the kids most especially like he was a 2 year old. It has helped signficantly in a number of ways in my life.

Reading this breaks my heart. What ever happened to 'in sickness and in health'. He is a cruel selfish man, incapable of real love. You need to find your self worth and leave him..what is he modelling for your children?

What an extremely unpleasant post. Do you have epilepsy, or know anyone with epilepsy?

Saying OP is selfish and basically an unfit mother and damaging her children as she is epileptic, is an attitude that is really outdated now. Society has plenty of measures to put in place to support women with epilepsy and lots of other disabilities and their children, in order for them to leave abusive husbands - whether they are disabled or not should not stop them.

OP has come here for support, not a kicking when she’s down, for fucks sake. I could say people with attitudes like yours would be damaging their DC passing them on to them. I can assure you that despite my epilepsy which is more severe than OPs, my own DC have grown into young adults who are caring, responsible and compassionate and a whole lot nicer than the kind or person who writes posts like yours. They will turn into better spouses than OPs, that’s for sure. Epilepsy isn’t some kind of leper disease where we should be hidden away and our DC not left in our sole care.

Do you have epilepsy, or just your (ill informed) opinions?

And believe me, that’s a much politer response than you deserve. If you’d like to tell me that I am highly self centred, and caused my DCs childhoods to be “damaging and painful” because I have epilepsy, you will get the proper response you deserve (but I wanted a defence of OP to stand without being deleted first!).

Thank fuck I’ve raised DCs better than to become people like you. My DCs are lovely and wouldn’t dream of hurting people the way you have on this thread, based on your ignorance, prejudice and misogyny. Stay in an abusive marriage or surrender your DC to an abusive man because you have epilepsy, are you for real FFS?

Yes so cruel ......

@jsku , if you get breast cancer tomorrow , will you accept yourself as an unfit mother and give up your kids to their dad, or worse , their abusive dad ?
Im very sure breast cancer is probably traumatic for kids to see too, - chemo and radiation is not pretty too ? where do you draw the line?

We are fooling ourselves when we think we are a kinder society these days ?

Maybe you did not mean for your words to OP to come out the way they did? Please self report and delete

The smug 'good luck' is entirely misplaced coming at the end of such a load of victim blaming, empathy-free drivel. I hope that OP is true to her word and has left the thread so that she doesn't see your hideous post.

I agree!
I would have probably been banned for what I was going to say to that response as well!

My mam was an only child and was main carer for her parents who both had mental and physical illnesses….therefore spent a lot of time in hospitals. That is how I became a nurse!
My 6 year old daughter is great and isn’t scared of hospitals/doctors/nurses/ other healthcare professionals due to my work and visiting dad in hospital (the nurses made a huge fuss of her when he was in for over a week) she’s comfortable talking to the paramedics when I had to call them before Christmas for her dad.
She just said ‘he’s had another wobbly dance’.
she is confident in asking for help, knows her address etc.
I believe this will prepare her for when she’s grown up to be a well balanced individual who cares about people..

I can only presume some on this thread are exceptionally old and ignorant, but were also not taught (as many old people were) that if you can’t say anything nice then don’t say anything at all.
I’m over 60, had a parent with epilepsy and it was not considered odd, particularly unusual or dangerous - some of the views expressed on here have no place or relevance today, and nothing to do with helping a woman asking for advice on her relationship.
I’m actually astonished people in 2026 would think like this - I expect it’s all made up really with the purpose of being horrible - which is also abhorrent and astonishing but you do see it on here - unfortunately.
I hope OP is now managing to avoid such posts and find support from decent people.

Just want to say I agree wholeheartedly agree with the last few posts from @EpilepsyAndVulnerability and others. Really horrified at some of the archaic, almost medieval, views expressed on this thread. I can only think some pp have serious unaddressed issues of their own and if these posts reflect how they feel about their own partners, God help them (the partners I mean).

There’s been so much reductio ad absurdum on this thread. Poor DH is under endless stress because of OPs seizures so it’s not surprising he behaves like an arse. No, when OP has a seizure or is in the aftermath he knows she will be back to normal in a matter of hours. He just has to cope (a few times a year) for a few hours until normal life resumes and he can go out with his mates again. I mean, it’s hardly like caring for someone who is permanently incapacitated 24/7 is it?

And children being kind and helping their mum when she’s (temporarily) unwell will negatively affect and traumatise them? Good grief! Such lack of humanity on display.

I’m also really glad to see other people have challenged particularly ignorant posts, thank you to all those people.

i understand seizures can be disconcerting sometimes even terrifying (if unexpected) to see, whether any type of focal, or tonic clonic and I wonder why that’s why it has this “stigma” around it. It’s doubly cruel as epilepsy itself is a particularly horrible condition/disease/disability to have. It robs you of so much dignity as well as control and ability yo lead a normal planned life. Being guilted you’re a shit parent for exposing your DC to it like it’s fucking Ebola or something, is just giving you a kick that feels almost gleeful and superior from the tone of those posts. Very unpleasant and I hope it’s not upset you @SoConflicted0126 (personally, I can never leave a thread even if I say I’m going to!)

Hugs @EpilepsyAndVulnerability

Thinking of you OP/ @SoConflicted0126 and hope your evening is going well....

I'm so sorry to read how your husband is behaving towards you, that is not ok. My ex was also dreadful when I was unwell and although it wasn't the reason for us splitting, it did make me realize that we wouldn't grow old together because I wouldn't have trusted him to look after me if I was seriously unwell.

One thing which I have learnt over the years is that we can't change other people's behavior, only our own. I'm wondering whether your husband would be more aware of the seriousness of what he is doing if you stopped forgiving him, moving past it, going back to dinners and cuddles and sex. I wonder what would happen if next time you consciously show him how you feel, and refuse to be conciliatory.

And if he starts trying to turn it back on you about how he can't ever do the right thing I would say something like "I just can't stop thinking about how you spoke to me when I was so vulnerable, it is so upsetting, and I don't know if I can move past it, especially when it keeps happening". It's right that you are able to be honest about your feelings, and it gives him the opportunity to be the one trying to fix things, make them better, suggest counseling etc - rather than you always being the peace maker.

I think that you could also bypass the situation by asking a friend if they would be on call and come to look after you when a seizure starts - you could teach the kids to call them at the same time as the ambulance etc.

But, ultimately, in your situation I would leave. Because this will be horrific if you get cancer or something like that in the future. And it will be easier to build a good life for yourself solo now than in 20 years.

I think people get offended so quicky these days, and quick to jump to conclusions. I don't think the deleted post suggested OP was an unfit mother, or blamed her for anything.

It merely said that OP seems to be minimising the effect of her condition not only on her H but also on her kids. And that IF she were to divorce - it would be better to have an adult support network, rather than rely on her 7&10yo kids.

Of course OP's kids are affected by watching their mother threatening episodes. They are scary for adults too, so denying the effect on kids is disingenuous. There is no blame in this sad situation - it is what it is. It has nothing to do with stigma or archaic views.

I also do not think the post suggested that OP needs to remove herself from caring for her kids. It was the opposite - the post very appropriately said that IF OP divorces her H may use her health as a way of getting more custody, and that OP can mitigate it by recognising that she need to create an adult support network.

I also think some people are minimising the effect of the father being emotionally abusive and cruel to his wife in front of their children. Let’s not pretend his cruelty will have no impact.