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?

Seems to me you've got a very good man there. My suggestion would be both couples counselling, and also he needs some counselling of his own. Your condition went away once before, could this be a possibility once again? I also wonder if you can get other people to help when you have a flare up, to give husband some respite time off. It may be surprising just how hard it is to look after someone that you love, when they are very very poorly, and all memory of romance and intimacy seem to fade. Try to introduce some humour and fun, and little treats when you are in your better phases. Wishing you love and luck xxx

I don't get £800 disability a month.

I get £300 a month for the fact I don't drive and can't use public transport so it pays for my travel.

The rest of my income is from my job.

My apologies I see it's £800 between work and benefits not just pip.

My consultant actually offered to talk to my dh and try to explain to him that I was genuinely ill and being angry at me wouldn’t help.

(he didn’t put it like that obviously).

I'm so sorry you are experiencing this too.

You explain it so well when you describe how small your life is. It's the same here, my life is shrinking whereas my husband's life grows. It's really hard. I don't resent him for it all..... but I would give anything to swap places with him.

Maybe I do need to try and refocus and think that maybe he's angry at the situation and not at me.

OP try this the next two times there are episodes -

1. Do not call him when you have an episode, make the person who gets called (by A&E, Hospital, work) be your mum or a friend or sister/cousin/even a colleague who is empathetic and kind
2. Ask him to please never come to the hospital during these episodes and to just text you updates on what is going on at home with the kids etc so you are in the loop
3. Freezer batch made meals for the week after the episodes. Get support from family and friends to sort this every month.
4. Call taxis to be taken home on discharge from the hospital

Tell him you are still with him for the nice 350 days of the year when it is the nice guy who shows up and that you do not want to see him the other 2-3 weeks of the year. That would keep him around for the good times and at least you dont have to see the person he really is when you need empathy and kindness the most at crunch times. His behavior on those 2-3 weeks sounds appalling, he should be ashamed of himself - he may well be struggling but this is not adult behavior. Hope he never has to be sick and dependent on someone unkind, not.

Also so sorry that your condition has come from well in control to flaring up these past 6 years - I am familiar with epilepsy through very close family members who have it - if it was completely under control for 17 years, there is a good chance it might re shift back to fully controlled with meds again - have you looked at specific triggers etc and had the discussions with your medical team. Sorry if that is off topic, just pointing out the obvious. I hope it gets sorted again and karma visits your 'D'H

@MNLurker1345 High Five,

OP, from your later post, I think you may be minimising how much your situation changes everything, not only for you, but also for him.

Which post sorry?

I knew you were going to say epilepsy
before I read your other posts @SoConflicted0126its frigging awful!

As someone who has been with her husband since we were young teens of 13 and 14 and to have epilepsy come out of the blue at the age of 33 it is terrifying.
I'm a nurse and have dealt with seizures before but his TCs are so violent I ended up having EDMR therapy for PTSD. He was worried about me and I was worried about him. I was acting irrationally, if he itched his head in bed I thought he was going to have a seizure.

However he has had to endure dislocated shoulders after every TC and has fractured his shoulder before and has required surgery. He has had multiple hospital admissions.
Our daughter only 3 at the time of diagnosis….shes now 6 and she knows seizure first aid and how to call for help.

He went seizure free for 2.5 years and it’s reared its ugly head again and he has had to
give up his driving licence again. (He never drove our daughter in the car).

Never once have I resented him……yes I’ve been overwhelmed….mostly with worry.
Yes I have to do the driving, yes I worry about him when I’m a late shift at work (his seizures are on a nighttime) I’ve had to change my shift patterns etc. We rely on my sibling to help with school runs….
He works in IT and continues to work (it would drive him mad to not work).
But we are a team!
I do disagree about the ‘carer’ for 2-3 days at a time though, mentally I never switch off worrying about him.

He needs to change his attitude or he needs to leave. This isn’t healthy for either of you.

JFC all the comments of what a good guy he is, the poor thing, what a burden on him, awww he's so scared that's why he's so mean.

How LOW are are our standards for men, FFS!

At best he's a shit who can't - doesn't WANT to or doesn't think he should have to - regulate his emotions. At worst he's an abusive fuck who irritably sees his wife appliance malfunctioning and thinks kicking her will get her working again.

OP, don't accept this shit from him. This will be your life from now on if you do.

Scared or not, he's behaving like a complete prick in those situations. It's not like you're doing it deliberately to upset him.

It does sound like he thinks that your health is temporary and that the events are setbacks It also seems like he can manage the day to day routine but the events are beyond him.

Have you talked about therapy - for you both separately - this affects both of you (for you quite obviously). If he's not up for it in any shape or form I'd start to look at your options.

I really feel for you.

@Cantbebotheredwithchores

I've also done a lot of seizure first aid with my children as they've witnessed me have them. Thankfully I've never been home alone with them when it's happened but I'm sure it will happen one day.

During one occasion I was talking to my eldest about the warnings I get before I have my seizures and the changes he may witness in my behaviour and he actually said, "Oh we always know when a seizure is going to happen because that's when daddy really starts getting angry at you."

I just wanted to cry.

Not only because of how bad it made me feel about myself, but also because I think, is this what I want them growing up around?

Unfortunately my daughter has been alone with my husband on his first seizure and another seizure and he managed to call me on his Apple Watch during his focal seizure so I could talk to her/time his seizure while I was driving to get to them.

It’s a stressful situation, he insists he is fine……but devastated our daughter has seen him have seizures. I put a positive spin on it to say that she is amazing and caring for her dad (I did come in to her sitting next to him stroking his head saying ‘dad had a wobbly dance again).

He brushes it off as he doesn’t want to talk about it……. the only advantage he’s took on having epilepsy is his disabled rail card. He wouldn’t apply for anything else. The last 2 seizures as I kept him at home…he’s just said…..it’s not bad! I’m fine.

I feel as though I take on more of the emotional burden and think about all of the what ifs to keep them both safe……
thank goodness my sister lives in the same street!

@SoConflicted0126His 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.

you have absolutely minimised the impact your illness has had on the entire family!!!

i agree with a pp that your husband is probably angry at the situation rather than at you but probably resents the fact that you have what you have.

however, some understanding from you wouldn’t go astray

Private message sent to u

I’m honestly shocked at the minimising that’s happening on this thread. OP, your husband is emotionally abusive towards you. Your children have noticed this and that will affect them. It affects you. You can never feel safe around him. Where his abuse comes from (resentment or fear or overwhelm) is irrelevant. He needs to sort it out and if he can’t or isn’t willing to I would leave him.

By the way I know what it’s like being a carer. I’m not downplaying the stresses involved. It is not an excuse to abuse your loved ones. I also know what it’s like being the one cared for. It’s terrifying and destabilising. I imagine more so when you have a man like this. Sending you love OP.

I heard somewhere that many men can't deal with illness .This is true to a point I think.My DH has had to step up as I have Cancer, and also cant walk very far or fast now!(We are in our 60s) I sense that he gets impatient sometimes too.We attend a support group, and one of the other ladies says her DH is similar.I try not to let it get me down, as I depend on him for lifts to Appointments.He will always want to go out so I can suggest NT .local towns what ever and hes willing to go as well

This is so sad to read, OP. My DH has epilepsy and, for other reasons, can no longer drive. I just suck it up! We do our shopping online, and I got used to being the only driver.

It sounds like yes, your 'D'H is a practical man who is frustrated with your condition, but also that he is angry at you. As some PPs have suggested, it is important to find a way to talk all this through and find strategies to deal with the realities of your condition and his bad treatment of you. A mediator or counsellor should be able to do this, if your DH takes part with integrity.

So based on what your DC have observed as warning signs for a seizure , your H's angry mood triggers the seizures ?

Try leaving him for a while on some pretext or excuse and see if the seizures come under medication control again like the 17 years before the past 6 years.

I read this and just can’t believe how awful it is. I have a close family member with epilepsy & regularly have had to deal with seizures & their aftermath. I worry so much about my loved one! I simply cannot imagine what sort of human being you would need to be to be so cruel to someone vulnerable in the aftermath of a seizure.

OP I can’t advise on what to do about your H because you are clearly in a dreadful position. I mean, he sounds vile! A truly horrible human being! To treat you like that! You have my utmost sympathy.

But I just wanted to ask - are you 100% confident that the care you are getting, in terms of the suitability of your medication and its dose, is the best it could be? I ask because my experience is that NHS epilepsy provision is very variable. My LO was initially prescribed (by NHS consultant) a medication that was very unsuitable & this was only changed on consulting a private neurologist with a very good reputation.

Weekly shops: order online and have it delivered.
kids activities: car share with other parents to reduce the number of times he needs to drive them
hospital appointments: how many are we talking about? If your DC have the need for regular appointments then do they have any illnesses or conditions that add to the issues? Could you not get an Uber to take them?

Look at the tasks that you’re unable to do and figure out how to share the load more equally. That’ll reduce the pressure all round.
My DH can be quite uncaring on the surface when I’m very ill. When we talked about this, it all stems from him watching me almost die from PPH after having our daughter and being told by the doctor as I was taken into theatre to be prepared for the worst (I was unconscious by this point). It absolutely traumatised him and my state of health is very triggering for him now. Could your DH be feeing similar?

What is the condition? Are you likely a remission or will the condition get worse? Edited: Apologies, I've just seen your condition.

No, my DH gets angry as soon as I tell him that I feel like I'm about to have a seizure.

Or if I don't verbalise it (because my level of consciousness is already too altered), he just gets angry when he notices himself what is happening based on how I start behaving.

I am so sorry you are having to put up with this.