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?

Ted Bundy was probably a very nice man 200+ plus days of the year, just saying

I do think you are minimising the effect on him. This doesn’t make all of his behaviour completely right, but I think you as well as he needs to have a bit more understanding.

How old are your children OP?

Thank god im not going mad here, I was thinking the same. All these posts about what a poor guy and how hard this must be!

Im sorry but when things are easier for him he is nice, when he gets to swan about, the minute he needs to step up he turns into an arsehole. How are we pandering to the poor man here!

The fact he was also willing to say awful things in front of her parent and a consultant too and the fact this is such a pattern that even the children know he acts like a twat, im sorry but no this guy is an arse.

Ive been the person that needs all the help and trust me my Husband has it much more full on than this, its every day and not once has he ever made me feel crap for being ill. He will go out of his way to take any burden off me.

Ive also been the carer for a parent and for a poorly older child.

So ive seen it from both sides and im sorry but he is acting awfully and then wont even hear it. When you are vulnerable he chooses to really kick you, thats not a poor stressed good man, thats someone being an arse. And a good man would at least listen when you are telling them they make you feel awful, even if they dont agree they would listen.

You can try counselling as maybe an outside person will get him to see how awful he is behaving and the impact it is having on you. But honestly it sounds like at the points you need him the most, he isnt around anyway so you are already acting as single in those moments. Maybe its worth trying what someone above said and working as if you are single and getting that extra support from others. Taking that stress off may help and ultimately may help you decide what you want to do long term.

It also may be worth trying the benefits calculator to see what you may be able to get if you were alone.

Since my seizures returned there have been 3 changes made to my medication regime (the introduction of two new drugs alongside the one I already took), and another emergency drug I take when I feel a seizure may be about to happen. I've had my doses increased and increased and increased some more, but nothing is making the seizures stop. I've been under the same Neurology Team for 15 years now and they have always been excellent - my epilepsy nurses are so wonderful and are always at the end of the phone whenever I need them.

They have no idea why my seizures suddenly returned or why we can't get them back under control again. Just the horrible nature of epilepsy I guess.

I had considered going for a Private Consult and I did go down the path of finding out what it would involve, but I was told that if the Private Neurologist came to a different conclusion than my NHS team has (based on my history and seizure descriptions) and suggested a different treatment plan or further investigations etc then my NHS team are not obligated to agree and they can just say "No" (likely due to cost), so ultimately I'd be no better off.

Paying for private consultations, investigations and monthly medication just isn't an option.

I agree, its actually frustrating everyone suggesting more things the OP can do so her Husband doesnt have to have any extra work, like he couldn't possibly take his kids to their hobbies in case the poor man gets overwhelmed! Are our standards for men really this low we have to pander to abusive behaviour and excuse it as poor man must be overwhelmed so he gets to treat his wife like shit so the solution must be to run around and help him feel better. I despair.

With regards to my husband's extra driving with the kids activities, he just has to take them somewhere twice a week now as opposed to once, so it's not a huge amount.

Kids are happy and healthy - one of them has got to go to hospital every 6 months to see a dietician but its nothing serious. I used to do this but now my husband does (in light of me not driving).

I do wonder if actually seeing me in my seizure states is actually terrifying for him and anger/frustration is the only way he knows how to react. However, he's too "manly" to admit that even if it were the case. He doesn't show vulnerability, ever.

They are 7 and 10.

I suspect it’s more that he’s irritated his family support unit is acting up and it’s too late for him to get a refund. His complete lack of empathy has bugger all to do with trauma.

He did once tell me that if my epilepsy had been active when we'd first met then he wouldn't have dated me as why would anyone sign up to this kind of life 😔

how are people saying that he's not to blame?

Did you read THIS bit?

"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".

He sounds like a prick, sorry Op. I think as a MINIMUM we should expect support from our life partners when we're so ill we nearly end up in ICU!

It sounds like he’s punishing you for being unwell. It’s not just a lack of empathy it’s cruelty. I’m sorry.

I was with someone who had a life long condition too and fortunately it came by just at the start of our relationship so we learned it together.
Its a tough one because this is something he did not sign up for with full experience. I think you have to see his side also as tough as it is, he has stuck by you, we are not perfect but 15 days of the year over the rest, i would stick it out and maybe do a letter directed at him and express how he makes you feel and i am sure he will take it in more over just tears or bad days you experience .

just a thought

There's no need to apologise. He is purposefully cruel to me when it happens.

My first thought when reading , before I got to where you said about your friends thoughts was that he sounds scared and upset that he can't make it better for you.

Are there support groups for your condition for family members where he might get some more information and support from others who may share some of the same feelings?

I'm so sorry that during your hardest times you feel so unsupported.

Fuck me. How low is this??

in sickness and in health.

sickness literally 2 weeks a year… and I’d venture a guess that if she were supported and cared for better, perhaps it would be less than 2 week.

@SoConflicted0126 I don’t blame you for your resentment, I’d feel the same. Perhaps therapy?

In your initial post you describe him as picking up a lot of slack in relation to providing financially, household and childcare. Although not physically caring for you, those are caring tasks he's taken on (willingly and graciously from what I can read) due to the reappearance of your condition. Being a carer doesn't only involve the level of care that you'd need when in the middle of an episode.

This is a very difficult situation for you both, and likely your children too. When sufmddenly your wife, or you mum, albeit fir short periods, becomes seriously ill (almost icu) abd unable to function normally, it has a huge impact on everyone and you will all be experiencing a huge range of big emotions.

I've just read that you have Epilepsy. That makes things a bit clearer. Even moreso I think your husband is probably terrified. I'd guess he now lives life in a state of high alert, scared about when a seizure might happen, what the potential outcomes for you may be. When you have a seizure tgen he is potentially so overwhelmed with the fear for your health or your life, that he simply just cannot cope.

I hope you're able to find the right support for all of you, to help you to hold your family together, if that is what you want .

@SoConflicted0126 I had a parent who was brilliant 99% of the time and then when overwhelmed had an occasional outburst of cruelty to my other parent. It was a mindfuck. It taught me nothing good about adult relationships and although outwardly I was a happy child home never felt truly safe. It made me an anxious person. Even as an adult I’m always scanning for danger. He needs to wake up to what his treatment of you is doing to the whole family. Feeling overwhelmed or scared is no excuse. His deregulation should not be your problem or your children’s problem to solve.

Sorry to hear about your issues.

I am confused about your description of the life changing impact to you of your returning epilepsy Vs your perception of minimal impact to your DH. I wonder if this might be connected to his behaviour? (Which I am not condoning at all).

I wonder if you would benefit from some sort of therapy to work through the life changing effects you are dealing with and try to maximise your own life perspective (which sounds quite damaged by your experiences). It may knock on (positively) to him, or it might make you decide you would be better alone and that being with him is worsening your life overall.

Good luck working through things.

bingo - as per my comment above, he clearly did not have an informed decision. I feel for you dearly but I also see his side, without being politically correct, I work with patients who have it and my dear god, i cannot imagine the burden people face at home living with it.

If you believe he is supportive 8/10 times, I would view life this way than you going out and suffering with 800/month

in sickness and in health but you are neglecting the fact that how it has impacted him also - no 50/50 anymore, caring for wife etc all by himself and still having to work full time even if its 2 weeks out of 52(she said months fyi)

OP, you say you can’t go out alone. If you do move out, would you be able to have your DC to stay with no other support? Would you be considered a safe environment? Or if you moved out would you be with parents or someone else? I just worry it would make it difficult for you to have permanent access to your DC.

I do agree with others though, being with someone who is having an episode is very scary, especially when they aren’t controlled. I’m not sure where I stand on whether your husband is being deliberately cruel or unable to control his worry and fear.

I suffer very badly with anxiety (I am on medication for it) and I do believe a part of it is the constant worry, and feeling on edge of what the repercussions will be from my husband if I have a seizure.

I worry more about how the treatment I will receive off him than I do the seizure itself.

Sounds like he is very angry about your health and takes it out on you when you are at your most vulnerable.
That's complete unacceptable.
It's not surprising you want to leave, and it's awful that your DC have to see him getting angry with you.
I'm your shoes I think I would consider leaving very seriously but offer that if he got counselling and actually took seriously how damaging, shitty and abusive this behaviour is maybe it could work..
Sounds like he doesn't get it at all, though, and you'd have to actually follow through and leave.

Depending how much parenting support you have you might need to wait a few years until the DC can be left home alone.
So sorry, op, this sounds absolutely awful for you!

I'm home alone with the children all the time - that isn't a problem.

The only real risk to my safety is when I'm alone because then certain types of my seizures can pass by unnoticed and on previous occasions I have been put highly at risk by that. So I don't go out alone anymore to avoid that kind of risk from happening again.