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?

Why have you lost your friends and your social life? If it’s 15 days out of the year why can’t you still socialise? I do think it’s shit for you, but it sounds like you’re retreating into yourself which is contributing to you feeling miserable.

Thank you.

My dad, and the Consultants looked at my husband in absolute disbelief and in that moment I felt so ashamed so be married to someone who could be nasty to me in front of other people at a time when I was clearly very unwell. It was horrible. Part of me hated him for making me look and feel so worthless.

Between the loss of my licence, my fear, my anxieties, the way my seizures present (I can't go out alone) and the effects of all my medication it is very rare that I go out. I hate it. The isolation that epilepsy causes can be worse than the seizures themselves. 😕

It sounds to me like he needs badly to talk to other men in the same situation.

He sounds lost and unable to cope, and unsure and it comes out frankly nastily. But what's at the bottom is fear.

Talking to other ~men~ in the same situation might help. There might be male carers organisations or associations or even online forums.

And all of this, has affected you, him and the relationship.

If you leave him, you will have to navigate all of the above, without the suppport that he gives you for the 345 days a year where you're not unwell, and negotiate childcare.

Think hard. It would be the nuclear option, and it wouldn't give you back your freedom, your financial independence, peace of mind, driving license, health, career or social life.

It would give you a different set of headaches to handle, as a solo parent.

His behaviour sounds shit, at points, and if you feel on balance you can divorce him and live seperately more happily then of course you know best.

I agree. Honestly OP, he sounds awful. I have a serious chronic condition and my partner is not the type to sit by the bed holding my hand, but he does what's necessary and doesn't moan about it. It must be difficult for you to feel safe when you are ill with his behaviour.

It's difficult to do stuff when you might have seizures.

For example, you have to arrange lift because you can't drive, and people get resentful picking you up all the time.

And you look like there nothing wrong with you so "how can you be disabled?", the constant comments and digs about why aren't you working then? 🙄

Then there's the embarrassment of keeling over in public, and regaining consciousness to a crowd of people staring at you, and an ambulance on the way 😳

It's hard.

I've already accepted what I've lost and how my life has had to change. I mean don't get me wrong, I absolutely hate it, but it is what it is.

I know that leaving my marriage will not bring back anything I have lost.
Nothing is going to bring it back.

But just because I can never get my old life back does not mean I have to continue in my marriage when he makes me feel bad about myself.

This is me! DH had 2 strokes, which has been life changing. He has Cognitive and speech impairments and anxiety. But he is able to dress himself (again badly), and make tea and coffee, use the microwave. Altogether functioning but needs constant care and supervision.

We are all of the above. My DH has a massive bruise on his shoulder. It’s painful, he stumbled and hit the door. When I saw it I was so shocked. “What happened there?”

I do get angry and frustrated and he does see it, he has too. But we work together on this as much as he is able and as much as I can take.

OP, Is there any chance of your marriage finding a balance that acknowledges the wellbeing of you both?

That's so awful 💐

If he was like that most of the time then it would be a definite LTB from me.

But if it is as out of character as you say, it suggests he needs some help.

Sorry, meant to quote @getsomehelp!

I am severely disabled.

i left my marriage after my then husband got violent towards our daughter and i had to call the police because he was drunk and I was scared he was going to seriously hurt me.

i’m not going to say the being on my own with my daughter was easy but honestly not having someone around who totally blamed me for my disability was as a lot easier.

I could do what I needed to to feel ok - taking rests and so on - without worrying about him getting upset and being horrible to me for not being able to keep up. Etc etc.

yes carers have a hard time. But sometimes it trips over into abuse and actually the disabled person’s life is better without them.

Hi OP,

I am a bit shocked by your husband tbh. Epilepsy is dangerous and he should not be treating you like this whatsoever!!!

And the fact that other people have seen as well. He is being hateful over something that isn't your fault.

I think he needs a stiff talking to by someone tbh, maybe your parents? Or siblings?

I understand that what he has to put up with is not great and often annoying but if he loves you he must do it. Tough.

At the very least insist that he goes to talk to someone so that he can offload about how this affects his life, because it does and this is his way of showing it. He absolutely must not be horrible to you about it though. He must own and process those legitimate feelings so that they do not come out sideways and if he wants to out boundaries in place, let him, because it might help.

I would also look into alternative means of assistance here and there. If you, sick, go to leave the house to go to the hospital with X person instead of him, or send him home from the hospital when he starts, then he may just get back in line with his attitude. If not, you have someone else, who will not be horrible to you.

I wonder if there is a volunteer service at the hospital? And who cares if his nose gets out of joint IF you should use someone else; you don't need any more trauma at this time and if he cannot guarantee that you don't then you do.

And one more thing - I think that, when we come out of a bad time, it is worth looking backwards at our coping mechanisms, behaviours and thought processes to see if there is anything we can learn / not do again. Start this with him, look back and see what worked and what did not, and then make changes for next time.

Glad I'm not the only one who thinks this. Just because he's nice when the pressure is off doesn't mean he isn't emotionally abusive.

Does he properly understand your condition, OP? Is it possible that he sees you are mostly fine (because, in his view, he’s picking up all the slack) and so doesn’t ‘get’ how the seizures affect you? Has there ever been any suggestion of a psychosomatic cause, i.e. he thinks your seizures are somehow within your control?

I do all I can to try and cater to his well-being.

Now that I don't work as much I have taken on the typical SAHM role....so I do the majority of the cooking, the cleaning, the majority of the household duties, and when it comes to the children I obviously do the school runs, the homework, the bath times, the reading, the playing with them, the bedtimes etc.... just the general day to day care of care of them that doesn't involve driving as he has to do that bit. And again, I don't mind this as it means he can relax more as he gets in later from working more hours in his job to make up for the fact I've reduced my hours.

He sees his friends 2-3 times a month, does his hobby every Saturday, does another activity that he enjoys on alternate Fridays etc, so he does get time to himself to de-stress etc.

Aside from the days I have my seizures, and the 1-2 days afterwards he is a totally normal, loving and supportive husband and we present as a completely normal, happily married couple with a typical family life.

But underneath it all there is this crack that widens with each seizure I have.

Are you able to claim any financial support, UC, PIP? To enable you to maybe take on help, like a cleaner or someone to run you and the kids around, take some of the burden from him, get someone to do the shopping or get it delivered.

Some people don't comprehend the energy these seizures take from you, you are literally using every single muscle in your body at the same time, at 100 mile an hour.

He sees you have a seizure and then wake up.

I am struggling to believe he is amazing the rest of the time. You’ve described he shuts down and won’t discuss things, Thats a serious problem in itself.

Being practical does not cause someone to roll their eyes at you. And the fact he felt comfortable being openly nasty to you in front of your dad and the consultant says a lot.

There is no excuse for how he’s behaving when you’re at your most vulnerable.

To be honest I have previously wondered if this was the case and so when I had my last Consultation check-up I did ask him to come with me, whereas normally he doesn't. The appointment was about 45 minutes long and we spoke a lot about the most recent episode I'd had (which had been very severe) and I kind of hoped that him seeing how seriously the Consultant was taking it and that the treatment options that the episode had necessitated would make my DH see that actually, it is a big deal. However, although he was engaged during the conversations, when I had another seizure about 4 weeks later (which required another A&E attendance) he treated me the same as he always has done.

Are you appreciating how his life has also changed significantly. What if he is stressed and anxious and cannot cope with life - what are his options?

Does he have to do even more than normal during your recovery?

It’s not your fault but he is lashing out. Have you discussed therapy for you all as a family?

After two years of becoming more crippled, having to give up driving, being fobbed of by the NHS. My DH has days like this with me. I just shrug it off. He's angry at the circumstances more than me I think. Someone said his appliance is broken. Funny but true. My life has become very small. His hasn't. We can't do the things together we used to. I'm resigned to it. He's very angry at times.

I get £300 a month PIP to make up for the fact that I can't drive or use public transport.

I don't get anymore because on a general day to day basis, my epilepsy doesn't affect me in a way that requires me to have any physical or practical support which is fair enough.

The 'hidden disability' nature of epilepsy is awful. It is assumed that you have a seizure and you wake up and life is otherwise fine. As so many people say, the seizure is just the tip of the iceberg and below the sea level is a whole heap of shit that affects every single aspect of the person's life that people just cant see or comprehend 😞

How are you getting £800 worth of disability benefits for something that only affects you once every 4/5 months and only affects you for two weeks a year? To get that amount you must be on high rate for care and mobility which would suggest you need a lot of additional support day to day.

'How often your condition affects tasks: To get PIP you must experience difficulty with tasks most of the time. This means that you expect to have difficulty more than half of the days over a 12-month period.'

something isn't adding up here

None of our business really.

His life has changed in that he has to work more hours to make up for my reduced income (an extra 6 hours a week) and that he has to drive the children to all their activities whereas previously we would share that chore 50/50. He also has to do the main weekly shop which usually I would do (because I can't carry that many bags home as I'd have to walk to and from the supermarket).

My income has reduced by about £800 but that is kind of balanced out by the fact that we now no longer run two cars, or have to pay for before school and after school clubs etc.

Although I do appreciate that he is aware that he's the main bread winner now whereas before our wages were pretty similar.