How can I help DH?

[ForevergettingitWrong]

This will be long and possibly jumbled so I apologise in advance.

Me - I am in my 30's, 4 children (2 from previous relationship and 2 with DH) I have some sort of chronic pain/fatigue condition, likely autoimmune and were trying desperately to get a diagnosis but progress is slow, no pain management strategy in place and my condition varies from completely disabled, cannot loft arms, head, cannot walk, think through the fog to being able to work part time but slowly and still in a lot of pain. Paracetamol and ibuprofen take the edge off when I take them at full dose for the day but certainly don't get rid of the pain and I'm not comfortable taking them to that extent every day without a proper medical advice. I also have asd and find relationships and being 'normal' bloody hard, I mask well but have recently been working with a therapist to find out who I am without the mask and unraveling all that. I am not naturally affectionate (although caring to a fault)
I have a life time of trauma to work through also and bereavements.

DH - 30s professional, quite highly respected in his job, ambitious, adventurous, a great father, funny, intelligent and thoughtful, he is also someone who craves affection, confirmation and reassurance he over thinks little things and get himself worked up over them and is incredibly insecure about our relationship.

We're like chalk and cheese, he likes crowds and hubbub, I like silence and calm, this hasn't usually been a problem, we have always agreed on major morals and have compromised to try and meet in the middle.

We also have 1 disabled child who also has behavioural special needs which are being ignored by everyone, another teen, a younger DC with SEN and then another child too.

Every so often (at least once a year usually 2-3 times) DH will suddenly break down, he's insecure, feels something is missing, feels like he's not valuable enough to us, like he doesn't bring anything to the table.
He is convinced that once upon a time we had 'movie' style love, hearts and flowers etc and that I was affectionate, passionate etc. However he seems to have a very rose tinted view because it was never like that, IM not like that and never have been, it's beyond me as a person sadly.

This seems to be where it stems from, I physically can't be very affectionate (a hand on his or reaching out with a foot whilst laying in bed) because I'm in pain, raising my arms to hug his is agony etc etc, obviously sex has been non existent for about 6 months, my health whilst always bad has gotten worse and worse over the past 18 months and I've had no time where I've felt well and pain free.

He claims he's not worried about sex but the affection is what he craves, I try to be affectionate as I can in my own way and treasure him daily that I love him and cherish him but that is not enough it would seem.
I asked what he thinks will happen if I become permanently disabled so can't be physically intimate and he claims he'll adapt because he made a vow and he loves me.

We're there again, this time he went to kiss me and apparently I flinched, I don't realised I had (it was early morning and I don't sleep at the moment so I'm shattered) and then he left for work and later I got a super long essay about how we're platonic and he feels like he's clearly not enough or is he different and that I don't let him help me with my illness so he feels useless.

I have explained umpteen times that he can help by being proactive and helping around the house, with the kids, supporting me in getting a diagnosis and management plan, but he wants to support me with hugs, kisses and physical support moving around and I don't want that, I know my body and my limits and I can move with as little as pain as possible because I've done it for years, if he tries to pull me up I might get more hurt. It's a control thing on my part, I'm very protective of my illness and have spent my whole life adapting.

We had a year about 4 years ago where I fell pregnant, I was devastated and my MH took a real hit, o love our children but find 4 hard work and pregnancy and births leave me a wreck. I had a MC anyway so don't need to make a decision in the end and DH now admits that he felt like I hated and resented him during that time.
Shortly afterwards I got to implant and it made me like a zombie, I bled constantly and wasn't really present at all (physically i was there but didn't speak/engage) I had this removed and it took a good year for me to feel like I was human again.

DH took this really badly and felt the whole time like I'd shit off from him, he says this was the turning point and it all started feeling 'off' from then on, everytime he breaks down this period is brought up and has to be discussed at length about how awful it was for him.

We have such stressful lives (we sleep on a tiny sofa in our lounge where the kids eat/play/have friends over, where we have medical professionals in for DC etc etc, there's NO scope for a babysitter, not with DC SEN so we don't have time alone in a space that isn't our living room.

I don't know what to do anymore, I have asked him to think about taking to a therapist and then maybe couples counselling?
I've asked him to decide if he thinks he can accept me as I am (I am like a rock but not cold, I just show my affection differently) and accept my illness or if he can't (and I wouldn't blame him, it's shitty) to tell me
So we don't do this forever.

Just want to say that this sounds so so hard and I really feel for you.

I haven’t got much advice but I also have ASD, my partner is neurotypical and once of the things we do is have conversations where we “translate” our thoughts and feelings for each other. E.g he makes a joke about me being demanding, I take it literally and feel awful. He then explains that it was a joke, it’s not actually true and that him making a joke means that he feels secure and comfortable in our relationship.

Can you try this with affection? So whatever it is you do to show affection, remind him that this is a big gesture for you and that you want him to receive it with warmth and affection? Do you have physical issues with touch etc? If not and you are okay with the kissing/cuddling then get him to label it that he’s expressing his affection.l to remind you why he’s doing it and that he cares. Obviously this does not work if you are genuinely trying to avoid the touch and dislike it.

We try and treat it like we both speak different languages that need translating to one another. Your situation sounds tough though. Is there any chance you can designate a space to be truly yours? E.g an arm chair. When you need space etc you sit in the chair and he knows to leave you in peace. If you have more capacity to engage, you sit on the sofa or verbally tell him.

That's excellent advice @user1498854363, I was expecting to be ripped apart for being awful to my DH.

I'm varied with touch, of everything is organised and calm and there's no chaos I can cope, if I've had a busy or stressful day then no way.

I will talk to DH about our respective languages, he's very open to techniques to make this better.

It sounds very tough from his point of view, and yours. And I think it’s a situation that many men would struggle with as much, if not more than your DH. (Just thinking about my own dh and how I’m sad to think I don’t think he would have coped at all with this and would be long gone)

I think that joint counselling might be a good way forward. Though I appreciate that is easier said than done with childcare etc but do make it happen if you can.

I don’t have enough experience of your disabilities to really give much of an opinion that could be of value but I will try. Please don’t be offended

I was reading it and thinking I can sort of see why he may feel this way... I can see why you do too.

You have a lot of children in clearly a far too small space and have a real list of quite high level stresses in your lives.

You on one hand plough on through it and just see things in practical terms. There is little to no emotion in your post but this could be a consequence of your current situation or just your personality. You don’t have the capacity to fill the ‘lover’ role he wants from you (not sexually but affection wise)

It is almost like emotions are not really helpful so you don’t need them whereas you need XYZ practical help. Whilst I get this entirely - marriage and partnership should be a balance of both peoples needs.

DH on the other hand is less resilient to the stress and wants to use his emotions, and wants you to show emotion or even small signs you are ok/happy/love him. If he can’t even kiss you then I imagine he is feeling quite down and perhaps the ‘employee’ role you would find more helpful actually makes him feel quite sad, unwanted and this is why he wobbles

The thing is, you are asking him to accept you as you are which means him compromising his needs and also being the one to make the agonising decision to leave his disabled wife and DC and abandon them. This is a heavy burden of expectation

Is there NO room for any middle ground to meet both your needs?

I read through the OP again

I think he does have unrealistic expectations of you, knowing you as who you are and what your current situation is with pain

You are more realistic but I think you have to ask whether either you are going to:
try counselling together;
manage as you are and try to navigate his wobbles;
or take control of the situation and make a decision based on what you want

Thanks for all the replies.

No offence taken, I don't get offended over anything.

I think counselling is necessary for both him alone and both of us together, I already see someone weekly.
I am happy to try and meet in the middle more but it's finding out how that's possibly physically.
I'm hoping that with a diagnosis and at the very least a pain management plan we can work on the physical side of things. We are keeping everything open to conversation and I am always honest with him and I hope he is with me so the topic is never closed even if we don't have answers.

No advice, just empathy. DW has fibro and a variety of other things. Many symptoms similar to yours. We have many of the same struggles you do. It's hard for both of us and I wouldn't wish it on anyone. Sounds like you're doing the right things in terms of taking care of yourself. Keep going.

I havr fibromyalgia and recognise a lot of the issues in your post. I'm often too tired and sore for sex or cuddling or long chats and if I've had a stressful day with the kids or work or trying to get the house in order then the pain is worse and I get short and snappy and DH gets cross that I'm off with him and I get cross that he's not being supportive and around and around we go.

Things have been much calmer here since I got a diagnosis. Prior to that he kept trying to fix me and, if I'm honest, he thought I was being a bit over dramatic. Having been diagnosed and showed him information he's been much more supportive and understanding of my limits and that it's not personal when I can't cope with him needing to talk about things when my head feels like it's full of bees and cotton wool, or he's feeling neglected because we haven't had sex for a while and I push him away when he cuddles into me in bed because I'm too hot and him touching my skin/leaning on my hip/running his hand across my shoulders is physically painful. It helped for him to see other people's reactions to my diagnosis as well. He understands that it's a real and serious thing.

I understand that this is of no use to you while you're still trying to get a diagnosis and management plan in place, but I hope it helps you feel less alone. You have so much on your plate and you must feel so very alone when he's incapable of understanding or helping in the way you need.

The idea of translating your conversations is a good one. I've found that looking at what is being said and how it was actually meant to be heard has helped us as DH can be very sarcastic and I have bad anxiety so I struggle with how to take things sometimes. It sounds like this is a stumbling block for your relationship as well.

I hope things improve soon.