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?

My DH, has had a health event that has changed our lives irrevocably. He had to retire, thankfully he has his own small business, which I have had to take over and run for income. Which meant giving up my own small business.

I am his full time carer. He is not bedridden but his condition is central to our lives.

Sometimes, I do get upset because there is no one to look after me. Sometimes I am frightened because this episode in our lives has laid my husband’s mortality out in front of me. No delusions.

When a loved one’s quality of life depends on the care of the other, over and above what it was, in your case OP, before your chronic illness re-presented itself, the identity of the other, the carer, has to shift and adapt.

It is not always easy. As you living with a chronic illness is not easy alongside the adjustments you have had to make and the things you have had to give up.

Talk to each other. If that is not possible, I can understand why you would be considering leaving him.

I will not leave my DH, I don’t see what either of us would gain from separation and so here we are.

My DHs DB, had throat cancer, his treatment was successful. He said, “both of us have been cared for by our brilliant wives, but if the shoe were on the other foot, would we do the same?”

I'm going against the grain here, OP. I think your DH is emotionally immature and borderline abusive. His behaviour is horrible, and when he's not being horrible, it sounds like you facilitate him having lots of jolly times away from you. Refusing to talk about it is called stonewalling - look up covert emotional abuse. I think at the very least you should insist on couples counselling.

I talk to him about it afterwards when I'm more back to himself but he just deflects or somehow turns it on me. On a few occasions he has apologised but then its the exact same behaviour the next time.

Hostile is a very good word to use. I just find it so hurtful.

I just don't understand how he can be supportive in so many ways outside of those times, but in the acute periods of me having seizures (and the days following) he can come across so cruel.

Counselling?

His reaction to your seizures may be a manifestation of stress, but it doesn’t really matter what the cause is, if he’s an arsehole to you when they happen that becomes the baseline of the relationship.

The first step would be to give him feedback on this and potentially to do some relationship counselling so he can hear how his behaviour affects you, he may not be aware of it.

If nothing significant changes after this, then you may have to rethink the whole thing.

Without a doubt his behaviour during your crisis times is awful. But I think it’s driven by fear, overwhelm and panic. He’s under a lot of pressure, main breadwinner, driver, etc. It’s not acceptable though.
I agree with some previous posters who have suggested he needs a counsellor or someone to look after him. Is there anyway you could enlist the help of a good friend or family member to help during your episodes? To take some of the pressure off both of you?

It sounds like you need to stand back and address with him the pattern of behaviour as a whole rather than individual instances.

He may not consciously admit to himself that this is happening so you need to hold up a mirror.

Dealing with illness is hard and there are times when I have got frustrated and angry with my elderly parents when they’re not doing anything wrong - it’s just stressful situation. Stress can make people angry unintentionally.

DH is lashing out at you as the source of his stress.

But equally some people are better equipped to deal with illness than others. Some have more patience, understanding than others. Many people are not particularly sympathetic about illness as they’ve never experienced it.

I don't actually need help during my episodes though - I'm either in hospital and he goes to work as normal, or if I'm at home my mum will come and sit with me (and usually the following day too) whilst he works as normal. It's not like they cause any huge impact on our daily life or cause extra pressure if that makes sense?

He is already doing a lot. You gave up your full time job as it was too stressful but does he have this option? I can completely understand what you are saying . I suggest you get some extra support with other family / friends or paid help for when you are debilitated.

It's difficult. I had a very bad accident 7 weeks ago. I will eventually make a complete recovery, but the way my DH has treated me & is acting towards me is vile. Like you, I've wondered if I should leave him over it. It's an awful situation, so much for "in sickness & in health".

And I genuinely do believe this may be an element of it.

I suppose what I struggle with is that I could never imagine treating him the same if it was the other way round - I just wouldn't. I would be full of so much worry and concern for him.

I just can't fathom how you could treat someone you love with such disdain when they're having an acute episode of illness.

With respect OP I think you’re underestimating how stressful epilepsy or any serious illness can be for the partner.

I know an epileptic who died following a seizure - it’s rare but it does happen.

Equally just having a partner in hospital is stressful. The unpredictable nature and incident of seizures is key.

I'm sorry you're in this position too.

It's very hard to 'unsee' this kind of side to a partner once they've exposed it.

I think you both need to shift to a position where you recognise that, even if temporarily, he acts as a carer. He has all the challenges of being a carer and needs support to face them. There is support out there he and you can access but it will largely depend on you both being ok with the carer label

Does not give him the right to treat her badly during her time of need.

OP I think you need to wake up to the fact that you are in an abusive relationship. The fact is he feels entitled to treat you badly at a time when you are at your lowest. He’s a bully.

How he is a carer?

What kind of support is it you think I need and can access?

(two genuine questions)

This is so difficult. Surely when we behave badly, especially towards someone who is ill and in need of care, we have it in ourselves to look at ourselves and say I was not being nice, and apologise and work to be better. Or is that just me being naive?

Sometimes I do get angry, frustrated with my DH, irrespective of his condition. As he does with me. I am human! But I do apologise and do better.

You are both struggling, but your DH does not seem to have the capacity to understand that his behaviour is not acceptable. When he is being like this tell him, seriously to go away. He needs to take a good look at himself. He is not a nice
person.

I’m sure you wouldn’t behave like that. But others may have more anger, less sympathy, understanding and patience,

Until my elderly father got late stage dementia I would have agreed. There have been times when he has argued the toss at 2am when I was so angry i just wanted to hit him. I didn’t though - I just stayed calm and talked gently to him but it required a lot of self control. I found this much harder than dealing with young children.

DH is not handling this well. Maybe he has underlying anger issues and lack of sympathy that he needs to work on as well as lack of insight into his behaviour.

Kindly op, I think you are under estimating the impact this has on him. Obviously this is absolutely not your fault but both your lives have changed massively. You mention not being able to drive, to go out, to go to the gym, or many places, or to work. Then periods when you are intensely unwell. All awful for you of course, but also puts a lot of strain on him and I know I would find it difficult if I had to carry that load all the time. I would do it, willingly, because I love my DH but I can absolutely understand getting a bit overwhelmed/frightened by it at times.

Support wise - he could take carers leave off work, each area has their own carers charity and support offered differs but includes access to funds (depending on a range of factors), meeting others in similar position for peer support which may help him talk about the stresses (and not take them out on you).

I'm sorry to say that I could see me being like your DH in this situation. For context, I do the majority of the childcare and housework alongside flexible part time work, my husband works very long hours but does far less housework and childcare. When he is ill (I'm talking flu, a virus, stomach bug etc as luckily nothing long term currently) I do not do well with it. I pick up the slack with childcare and housework which is obviously a little more difficult than when he helps but what gets to me is he mentally burdens me with his illness on top of that. From the second he thinks he's getting ill he's complaining, slacking off parenting, asking if he should stay away from DS incase he infects him, lounging around on the sofa, and saying I'll need to take care of him. It literally angers me, I would happily go and buy him supplies and then let him spend the next week in the spare room rather than have him behaving that way! I have no problem with him being ill but I feel like he puts even more on my plate when he behaves like that.

When I am ill I just have to get on with it, I've had a bad back for weeks and haven't had so much as a sympathetic comment. I also had day surgery last year and within 20 minutes of getting home I'd already been ditched with our toddler. Unfortunately I think we're both not great when the other is ill.

I'm not saying you are the way he is but just from the perspective of someone who struggles when their spouse is ill! I am otherwise a very patient person but him being ill brings out a not very nice side of me. How are you when you're ill? Are you snappy, depressed, cheery?

I agree he doesn’t have the right to behave like this, I said so in my first post on this thread.

But the first step is to understand this is a difficult situation that he is not handling well. Then to give him the opportunity to become aware of it and address it. If things don’t change long term then OP may need to rethink.

He doesn't need carers leave - I genuinely am fine after my seizures, apart from being a bit dazed and confused for a few days of course. I don't need caring for. To be honest, he's most likely relieved to be at work and away from me after they've happened.

And based on the way he treats me when I have my seizures, I'd far rather have my mom come and sit me with than have him at home anyway.

With kindness i think your underestimating the level of dependence you actually have on him and the pressure your illness imposes day to day without the extra exacerbations 4/5 a day

That does not mean your not wrong to feel hurt however breaking down from your post:

• he works full time, you had to give up your job and now work part time. Financial pressure
• you can no longer drive- so he does the childrens activities, shopping etc.
• your condtion is unpredictable, thats an ongoing worry, is someone going to call to say you’ve took unwell, who will look after the kids, have the kids witnessed a seizure which means he has to emotionally deal with that, even if not the kids will worry wheres Mum is she ok.
• when you do have a seizure/ admission it will feel overwhelming, hes scared, suddenly everything is on him, does he go to work- if he doesn’t will he get paid, will he trigger a sickness policy? Certainly in my line of work x2 episodes and we are on sickness management, will this lead to him getting sacked? All of those anxieties pile on as extra.

FWIW my husband has a chronic condition in which he receives treatments for, at one point in a particularly bad period of constant relapses i’m ashamed but will admit to say i reacted in the same way as your husband. We had no answers, we didn’t know if he would become ‘well’ again as everytime medication reduced he relapsed. I was huffy after juggling the kids to school, delayed discharge for two hours, the prospect of going to work the next day, obviously he wasn’t well enough to pull his weight in the house so all of that on top and feeling resentful when he was just in bed/ on the sofa. It was HARD and i love him to bits but i was worn out and it felt constant and at that point i probably would of snapped at him and perceived him thinking i wasn’t doing enough if he said i upset him by going to work the next day or whatever i just didn’t have the emotional bandwidth left to deal with that.

I do think you need to reflect on how his pressures day to day as well as when your acutely unwell. And maybe try and have the conversation when your well and he has abit more capacity to take it on board rather than when he’s already stretched. I do understand his indifference is upsetting but it does sound like overall he’s generally good

But you said that you be had to give up your career and he has had to take on much more of the childcare, and that you're not independent anymore and you're reliant on him....but now you're saying it doesn't really affect your lives at all, there's no extra pressure and actually his life is easier and better....