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?

A carer isn’t just somebody who provides 24/7 physical support to another person.

Carer in this instance may look different to that, but doesn’t mean it is not that. In your own words this has changed your lives “significantly”, if this was just 15 days a year as you are now saying it is then it would not be such a significant change, this clearly is a big thing.

He has, by your own admission, taken on a huge financial burden, as well as taking on a lot more of the childcare and general life jobs, that is part of being a carer. He might not be getting you dressed or helping you to the toilet but he is doing these things that you cannot do, and that responsibility and “workload” is on him.

There is also this sort of hanging over him, as it does you, the often unpredictable nature of seizures means that at the drop of a hat it could be off to hospital, 100% of everything on him to either do or arrange for someone else to do as in your example with the children after your discharge, it’s always that lingering in his mind, what are my options if this is today etc.

Add to it that stress & pressure makes it worse there is probably a sense of feeling he needs to keep things positive and stress free even when he doesn’t feel that way so that it doesn’t trigger you.

I’m not saying at all that he is right, but I do think the big picture here shows far more than just 15 days a year.

He's very aware of it. We talk about it after each and every episode. He will not accept that he's in the wrong though. He just turns it round on me or denies it. It's reached the point now where I'm scared to have seizures because I know how he will react and treat me. That's not normal. That's not how my husband should make me feel.

Ok - when you gave the actual details it is all very different from my read of the original message. Obviously what's happened is life changing for you but I agree its not really such a huge ask on him - you are still contributing financially and at home, just a bit less, and have a couple of days every 3 months where you need some genuine support. This doesn't sound like an extraordinary burden for a partner to cope with in a long-term marriage even if obviously it would be better if you were 100% healthy. Maybe seek marriage counselling to unpick why he behaves this way if it is so unchracteristic.

This. Both things are not true, OP you already said this has significantly changed both of your lives, those were your words.

I agree.

It sounds like both partners need a discussion into how the situation is making the other feel. It’s stressful for both.

I am very aware that I am now a burden to him.

But I can't cope anymore with him making me guilty and being cruel to me when I have seizures.

By leaving him I am giving him back the freedom of life and giving myself back the gift of self-respect. At the moment, the way he treats me when I have my seizures makes me feel totally shit about myself, and I don't think I can do it anymore. If you can't rely on your husband to make you feel safe and cared for during your most vulnerable times then what's the point?

That’s awful of him. You don’t deserve to be treated that way. I’d try couples therapy & then if it doesn’t help, look to build a life away from him.

If that is how you feel OP then you can leave him, but it would be worth thinking about how much more difficult your life may be when it’s just you and the children, financial worries on top of everything else, no support etc.

Sounds tricky OP.

Normally on MN my response would be LTB because the DH is a complete dick. But in your case if he is a good loving husband most of the time then it is really his attitude to your seizures that is the problem.

I think counselling for him would be the best option, but perhaps also together? He has had a major change to his life, and a big increase in responsibility. I suspect he is shit scared.

I have also had seizures since I was a teen, and I'm aware they are very very scary for observers. I have had so many people completely freak out and overreact, even though to me they are no big deal because I have been dealing with them for years. Plus, being unconscious, I miss the most exciting bit 😂

I think your DH is in a bit of denial. Every time afterwards he thinks that things have gone back to "normal", and then another seizure proves it isn't. His fear and lack of control is manifesting as anger at the source of the stress (unfortunately, you).

Of course it isn't your fault, and he certainly isn't dealing with it appropriately, but if he is normally a good guy then it may be fixable.

Of course, if he won't engage, and he continues with this crap, then LTB always exists as the nuclear option. But with young kids in the picture and you needing support due to illness, it's worth exhausting other options first.

💐

It has changed our lives...

We used to be 50/50 and now we aren't.
I have lost my freedom, my financial independence, my peace of mind, my licence, my health, my friends, my career, my social life etc. That may not be significant to you, but it is to me.

As a reverse take on this, I agree with @Aluna, I am my DH "carer", (& I know this is not the same as your illness, but from the carer's relentless stance.)
My H had a huge stroke, & although almost untouched physically, mentally he is more like a 7 year old.
He can get dressed (badly) get washed (badly), can follow me round the supermarket (slowly). So you could say he is able to care for himself.
He does however have frequent injuries/accidents, at the moment we are a month on from major burns, where he took it upon himself to burn some garden waste & set fire to his trousers as he stood in the embers.
It's just yet another problem to fix. It was avoidable, it involves daily visits from nurse, doctors prescriptions, frequent trips to the chemist.

Everything falls on my shoulders, Every single thing. from Finances & Admin to Meals &Laundry, from incessant Doctor appointments to checking his pill box
from the car MOT, to getting the wood in to lighting the fire.

I know I am not always patient, I know I am not always sympathetic, I know I often want to leave. But I am doing my best. If he said to me that I wasn't doing enough, being kind enough, patient enough. My reply would be "walk a mile in my shoes, I didn't sign up for this "

I do get that. But which of those things will you gain if you leave him?

You’re drawing attention to it, but he is in denial. And minimising. This may be because underneath he’s an arsehole, or it may be that he actually wants to be a good person but doesn’t admit to himself the reality of his behaviour.

I actually think you are both minimising how stressful the situation is for the other. (Although clearly you are not mistreating him as a result).

So your current situation is that he is scared of your next seizure and you’re scared of his reaction to it.

This is untenable. So I would suggest counselling and if things don’t change you may have to take steps to protect yourself.

I won't feel as shit about myself.

Only read OP’s posts.
Why have you lost your job? Is your epilepsy deemed as not under control?

Op, many of the people on this thread have been carers.

fewer people have been the ill person.
it is genuinely scary being ill and feeling that the people around you will hurt you and not look after you.

i feel your fear.

thinking of a way forward maybe it is worth thinking about putting a place a system for when you have seizure - that he handles the children and ?your parents or another family member comes and is your support.

i’m sorry he can’t be there for you.

it is a very lonely place to be in where you fear an escalation of your illness because you know your husband will take his anger and upset out on you.

I am divorced from a man who reacted sImilarly.

it is much easier to manage my own condition.
i am no longer scared of his emotions.

if I am ill I have friends I can call on to help me. I help them as well.

i have peace of mind.
i am much less stressed which ironically means zu am less likely to have an acute episode.

I think you are right.

The problem is that he is very emotionally shut down - he hates opening up and talking about difficult topics etc, whereas I'm the complete opposite.

I think problems have to be faced and discussed in order to fix them and move on..... but he just gets defensive and shuts down and somehow I'm the bad guy for bringing it all up.

I love him, and he's amazing in every other way.... but this is causing a huge crack in our marriage and he doesn't seem to want to acknowledge it.

I left my job because the stresses and pressures were exacerbating my seizures.

I still work, but in a much less stressful job and only 20 hours a week instead of full time.

A lot of this resonated with me @SoConflicted0126- even down to times where D ‘H’ marching off ahead and not being able to keep up.

My health issues were more constant but less impactful (ie I could still work). It did sometimes mean he had to do a bit more childcare, domestic stuff. But his perception is he did loads - while mine is that it was every now and then. And I don’t think he realised how much it took out of me to do what I did.

For many reasons it’s too late for us. But I wonder if counselling would help you?

The other issue we had is he was looking to me to support him - but that was hard given I was the one actually going through it… It would have been far better if he’d had someone else to talk to. Does your H? Would that help?

Thank you Octavia. I can't explain how lonely I feel sometimes. if I was out and about and I felt a seizure was going to happen I generally wouldn't want my husband to be called as my first point of contact. That's the point its got to now. When I'm terrified of having a seizure.....I used to worry about how injured I would get, or worry about whether I was going to wake up in a hospital bed, or whether I was even going to wake u at all - But now all I think is, "My husband is going to be so mad."

My husband sees his friends quite frequently - they probably go out 2-3 times a month either for a meal, or drinks or a round of golf etc and I would like to think he talks to them about it. However, my husband is great at putting up a front and I don't think he would ever show a vulnerable side. He'd want to be seen as the 'protector and the provider' and I imagine he keeps up that image to them. He really isn't one for opening up to anyone, no matter how much I try and encourage him to.

OP he's being abusive when you are at your most vulnerable. He refuses to accept this and turns it back on you when you try to speak to him about it.

I don't blame you for wanting to leave. And if you feel up to it I suggest you say this when you next try to talk to him. I doubt it will change the way he speaks to you then or at any other time. But it needs to be said I think before you decide what to do.

It's no use being married to someone who treats you like this when you're at your most vulnerable. I can't imagine what the hospital staff and your parents thought when he said he needed medication after having to listen to you moaning.

What a horrible man he really is deep down.

I think you're both really struggling with this OP, your life has changed so much because of it and he probably feels his life has too.

I think what might be going on is that you both resent the epilepsy (not each other) but that is coming out in all sorts of negative ways between you and you both end up feeling bad (beyond what the epilepsy itself is causing). You talk about it afterwards but when you're ill again the same feelings surface again anyway and you can't break the cycle.

It sounds like what he really struggles with is hospital and gets completely overwhelmed by it. How would you cope with the hospital situation if you split up? Can you do things that way now so that he doesn't have to deal with things he clearly can't and you still get to keep the relationship. Obviously he 'should' be able to deal with this in an ideal world but for whatever reason he can't. If you can find an alternative way to handle the hospital visits it might take the pressure off him and allow you both to get out of the burden/overwhelmed carer cycle.

It has had a major impact on your whole life, that is true. And that is why it is not "just 15 days a year" 💐

It is going to take some time for you both to adjust. It is a massive change and you will both be feeling some grief for the loss of normality. How he is treating you after your seizures is unacceptable, but LTB may not improve your situation. I wonder if you may know this and be feeling quite trapped, I know I am very aware of how difficult it would be for me to manage alone now.

My DH is strangely "detached" when I am ill, but I recognise this as how he is when dealing with severe stress, because I have seen him act the same when dealing with other stress situations. It used to piss me off a lot, but when I ranted at him about it he cried and seemed completely unaware of how he came across at the time. He is generally a good guy, so I try not to take it personally. He could do with some counselling too maybe 🤷