Husband in denial about my potentially life limiting illness

[Endofroadinhs]

I’m furious, disappointed, confused over this. So after 2 years of some vague some not so vague but overall painful and debilitating symptoms, I have been diagnosed with a serious autoimmune disease which is likely (almost certainly) going to start damaging my internal organs. Stats are: 25% chance of dying within 5 years and around 40% within 10.
im only late 40’s so this is scary, very scary. Am waiting for various scans and tests to determine how much damage has already been done and if i need to start on drugs which will also have a massive impact on my life.
so… Husband has shown no interest or asked any questions whatsoever and even sort of ignored the fact I had this consultation last week. Things erupted this evening when he moaned about me being tired all the time, I sad, yes its because I have a serious illness (insert illness). He then kind of deliberately misheard and said another illness totally unrelated.
i then sent him a link to the UK organisation with the stats and just replied ‘oh not you endofroad’ you’ll outlive us all.
I just don’t get this response!

I'm so sorry you are having to cope with this op. Is he usually supportive?

What is your relationship like normally?

So sorry. Sounds like he could be in denial and just can’t face it. You may need someone else to speak to him for you.

What a callous man. I’m sorry.

More likely very scared.

I'm sorry for what you're going through and your husband's response. Some people can't face what's happening and don't necessarily understand the impact on others of that. I think you need to be really direct with him and tell him that you need his support and acknowledgement and that you don't want to waste precious energy on being stonewalled.

It sounds like he hasn't processed it because he probably doesn't want to face the potential of it.
Have you both sat down and talked through what it could mean going forward?

Was he there when you were given those stats by your consultant?

To answer the q what us he normally like. In many ways he’s good, he’s an extremely good provider (v hard worker both at actual work and doing stuff at home) and hes a loving involved Dad to our kids.
However its always been difficult to feel connected to him emotionally and He doesn’t really ‘imagine’ how things are for me. Both of children are suspected to be autistic (lots if traits and difficulties over the years picked up at school and by me) neither will agree to assessment however) I mention this as now I see more and more H has these same traits. I think if something happened and I ended up in hospital that would make it more tangible to him maybe? But I feel angry, really angry with him for failing to try to acknowledge this and what I am likely facing.

Op - I have an autoimmune disease too (scleroderma), it can also be as serious as you say. But there is a wide spectrum so unless you've been told the statistics apply to you, they may or may not. I terrified myself when I first googled it.

Having said that, your DH's lack of support must be hurtful. It's likely that he's afraid too and not able to face reality. I think all you can do is sit him down and try to talk about it.

@NewNovember I went to the appt on my own as he’s no help, he’d just be stressing over parking ir answering work calls so I do this stuff in my own.

Am waiting for various scans and tests to determine how much damage has already been done and if i need to start on drugs which will also have a massive impact on my life.

Maybe he is waiting until the tests are done and there are actual facts that aren't via google. Something more tangible.

However be prepared for him never to engage. Depending on how he is in the rest of your marriage will determine whether your relationship survives. My DH still doesn't understand (or care) how my autoimmune condition affects me, after 20 years.

Some people can't face reality until they know more. Knowing only part of the story (so diagnosis but not really prognosis at this stage) is a lot worse for some people than others. Some catastrophise and assume the worst; others try to minimise and assume the best. Most people fit somewhere in between but your DH sounds as though he's definitely at one end of the scale.
In an ideal world, he'd be asking you how you want him to play this and how you want him to act and be (some people would like his response at this stage when you don't know enough to know what the future holds; others find it intolerable). I think men are worse at this stage and worse at being able to try and be what someone else (partner, child etc) needs/wants them to be.
He might surprise you when you actually have some answers and he knows more what he's dealing with. Uncertainty is tough.
But more tough for you. Encourage him to read about Susan Silk's ring theory which places you at the centre. He's then meant to respond to you as you need and any of his anxieties/insecurities (which is what is likely coming out as denial) if they are not helpful to you need to be directed outward to his family or his friends and not inward to you.
But he will inevitably be thinking of the impact on him too (which doesn't all have to be selfish thinking) and it would be good if you can also find other people to vent to and talk to - the fact that they are less close to you and will be less impacted if your prognosis is at the worse end of the spectrum than you hope, will make it easier for them to give you what you need as well.
Good luck. I hope it is good (relatively) news in the end.

No concrete advice but I'm really sorry for what you're going through. I hope your scans and tests show little damage, and that the outcome is as good as possible for you.

I can kinda understand your husband as I was similar with my sister's cancer. But he should be stepping up.

My stbxh has never engaged either, part of the reason he's a stbxh. When I first got sick (different condition) in late teens I thought I had to be dying because of how much pain I had and how bad I felt. I get how big and scary this is @Endofroadinhs . He should be stepping up, he should be engaging, it could be he's scared, hopefully that's what it is,
but given what you've said he's like normally I wouldn't be counting on him. If he refuses to engage or accept this he'll expect nothing to change and you to carry all the load you always do. Whether he's scared or not you have every right to feel angry about this @Endofroadinhs . He should be supporting you, what's the point of him if you don't get support when going through something so big. I hope the tests show the better prognosis and he gets his head out of his arse and is there for you.

Mine has always done the ostrich re illness. I've been having tests MRI and spinal filtration. He tells people there's nothing wrong with me. The surgery phoned while I was out with a message apparently the person he spoke to told him she was sorry I'd been through so much recently. He was taken aback I think.

I think this is how some men cope. They stick their head in the sand and minimise the hard stuff until it actually happens. I had a heart operation and from my husbands attitude, you’d think I had my nails done. He must have been scared but found it easier to pretend it wasn’t happened. Just no5 good with emotions.

Ahh I see would showing him your post appointment letter help as it will detail everything. I have a rare autoimmune disease too don't want to say which on here as it's so rare it can be outing (but feel free to pm me.) So I do understand how scary it can be and I too don't think others really get it, my dh does but not really friends. Am sorry you are going through this.

are there any family members you can ask to talk to him for you? You have a lot to think through, including what you want to have done in the next say 3 years for you and your kids (I don’t mention him because it’s up to you if you expend energy on him), and if he’s not a support he shouldn’t be on the agenda for you right now. Could you hand that over to someone else?

I got similar 2 years ago when I got breast cancer stage 3 with similar stats. Husband, also sounds similar and we have asd child, initially started on when we are retired together and when you outlive me in complete denial. Also at the start you also think the worst and the combination isn't good.

So what I did was say to my husband please don't say those things I want you just to listen and understand my life may be much shorter than we thought. I explained I found it very difficult talk of being 70, 80, 90, grandchildren etc anything I may not see. And he listened and changed. Its bizarre when you have stats like this though as you don't know if say you will live to 50 or 90. But you just have to accept that and enjoy here and now as much as you can. There are new meds all the time.

Lupus?

(I have lupus and those stats sound familiar).

It is overwhelming and perhaps he just doesn’t want to face it right now. Maybe though those stats won’t actually apply to you. Until you’ve had further tests you don’t know whereabouts you are in the spectrum of the disease, so perhaps he’s just waiting until then. He shouldn’t be moaning at you for feeling tired though; that’s not fair.

(If it is lupus- I’ve been diagnosed 3 years now and I have some kidney and bladder involvement but it’s managed well and I’m living a relatively normal life with the drugs I take).

Also found some friends like this, generally ones scared of it happening to them so go in denial, those found fairly useless but people in same boat have been great.

Before you wrote about autism, I wondered if it was that. He sounds like he has disconnected from what is happening to you and in denial.
I’m sorry for what you are going through, Incan imagine you feel lonely and vulnerable and now neglected by your dh when you need him most. Keep trying to tell him how you feel. Have you support elsewhere?
I wish you all the very best.

I'm really sorry you're going through this OP. I hope it's not as bad as feared.

I have lots of autism in my family and they would behave like your DH. Head in the sand, a deflecting joke, utter uninvolvement. Complete inability to confront or put you first. I could tell one of them I need surgery, they'd reply asking about what they'd do on X date when I would have seen them, or who will do Y instead.

Partially I think they're terrified. They hate change. You declining is a huge change, facing a world without you incomprehensible. Overwhelming. Part of it is that empathy and help you're looking for is just not the way their brains are wired.

It doesn't excuse the behaviour, it doesn't mean that you don't need more. I'd chat to him, but you may find he doesn't engage in that conversation and you may need to seek support elsewhere.

My friend got breast cancer, they'd just bought a wreck of a home abroad. She sent her husband out there for the summer while she dealt with it. I knew exactly what she meant when she told me.