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?

Posters here seem to think their function is to assign blame and function like a greek chorus chanting “THAT BASTARD” over and over. I don’t agree. OP has described an awful situation in which her dh both supports her financially and is incompetent/cruel/abusive to her several times a year. She wants to leave him and so she should. Nevertheless it remains true that the quality of her focal seizures and the limitations they put on her four times a year make it very likely thst her STBXH, whether good or bad, will seek more than 50/50 care of the children. She should be prepared for that. He may do so because he’s a jerk. He may do so because he’s a concerned father. But its very likely he will seek it. That is all some of us are saying.

We aren’t excusing or minimizing his bad behavior—that isn’t even in question!—but it remains true today as it was thousands of years ago in the Art Of War that you need to know and understand your enemy before you can win the battle. The OP’s ex needs to be understood in his own terms for her to deal effectively with him.

Your husband is incapable of meeting your needs just before, during and for a period after your seizures. He's unable to be a caregiver. He's just not cut out for it. There could be multiple reasons, but that is the bottom line. You have complex medical needs at times that he cannot and will not meet.

You need to find a way to get the care you need at intermittent times and randomly throughout the year by another adult or a group of adults whether you decide to stay married or not. Given that your kids are only 10 and 7, they're not going to be able to do much other than access medical help and what they do now. You have to have responsible adult support ready to step in.

If you get a divorce, what will you be doing for home health care? Will your husband take the kids when you're hospitalized? You have a medical condition that causes you to become mentally incapacitated at times and need hospitalization and aftercare. That's really going to complicate custody. I would really recommend you speak with a lawyer to see where you stand legally before making any decisions.

Good luck, you're in such a tough place.

Candidly, I can’t see any way in which your life would be better most of the time if you left your husband. It would be worse most of the time.
He needs to work on his manners during your bouts of illness and I think perhaps (saying this kindly) it may be something you might try to learn to accept and perhaps reframe as his emotions being directed at the situation rather than at you personally? You/ this situation probably are/is a burden at this time and it probably is a pain for him having to do everything, but it would be great if he could be a little more gracious and well-mannered about it since you can’t change it.