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!

There's a longrunning thread on ASD relationships. You would be amazed how many posters there have developed autoimmune disease. You might find it an interesting read.

I'm not sure he's in denial. He may be waiting for the results of the other tests which will give a clearer prognosis. I'm like that. DH tends to catastrophising. I prefer to wait for details. It's not that I'm in denial or that I don't care. I just believe in dealing with facts and absolutes, and not becoming emotionally exhausted over possibilities.
I hope your results are the best they can be 💐

Can't you outline that you need his support and reassurence at this time. You shouldn't have to ask he should do it. My Dw had a medical procedure to go through and was very frightened no way could have I let her face that alone. Op I really hope you get a good diagnosis and a decent treatment plan.

I wouldn’t say yes in denial. Sounds like he needs more concrete facts about YOUR case, rather than “Google says..”.

Gosh how hard for you OP. I think I would give him a bit of time - wait for the results of your scan. Then if it still doesn't sink in then you'll need to get tough with him.

I also have a life limiting (though not as severely so as yours OP) autoimmune disease and my DH can be similar to yours. He can also be lovely and supportive, for example he does most of the strenuous housework, but he says some hurtful things too. For example last night, I was fidgeting in bed because I was in so much pain and he shouted at me a few times for waking him up (fair enough I suppose, he has to go to work this morning) so I slept on the sofa in the end. Actually didn't get a lot of sleep because it wasn't very comfortable and the pain was horrendous. Also he's said before things like 'There's always something wrong with you' (when I told him I needed to sleep or I'd be unwell in the morning) and 'You could do it if you wanted to' (about things like walking on uneven surfaces). And he recently had a go at me for 'hobbling' when he asked me to do something. He also hates it when I talk about my disease but I have nobody else to talk to about it as I have no friends or other family. As you've found OP the implications for your MH are huge and talking helps but I can't really talk to him about it, certainly not as often as I'd like to.

But OTOH he's lovely when I take my medication (I inject weekly and the side effects are horrendous). He's very solicitous and makes sure I have everything I need and makes sure I have nothing I need to do on the days the side effects are worst. And he works hard (I can't work) and takes care of me financially. Sometimes I feel he resents that a little bit, or that he doesn't have the things his colleagues with partners who works have. We've never been on holiday, for example.

My theory is, he hates talking about it and gets upset when I'm unwell because he's scared too. And that seeing me unwell is worrying and upsetting for him. I know it would be for me if it were him who was unwell. I try to accommodate for this but it's difficult sometimes. Chronic/life limiting illness is also very difficult for our loved ones - I think DH feels helpless when he sees me in pain, unable to walk etc. He just can't express it properly so sometimes he sounds angry. Or he won't talk about it because it's painful for him, too.

I'm sorry you're unwell OP, are you on medication? Is it helping? It's so scary when you're first diagnosed, I remember it well. Good luck 💐

I’m sorry you’re going through this OP, I understand how hurtful it must feel.

I was diagnosed with a chronic health condition when I was a teenager, and it’s one that has a huge impact on various aspects of my life, as do the various tablets I have to take daily. Although it isn’t life limiting in itself, it can cause death during a flare up, and I was in hospital with it earlier this year on the verge of going into ICU.

Ever since my initial diagnosis (when I was 16) my mum hasn’t been able to cope with it all and pretty much refuses to talk about it.

Its been almost 25 years since my diagnosis and If I actively try and discuss my condition with her, in relation to any current difficulties, she will totally stonewall me and then immediately change the conversation.

It really is like she can’t acknowledge it’s real.

I don’t think it’s denial because after 25 years of having this condition she’s seen me go through many up and downs, it’s almost like it hurts her to see the reality and she doesn’t want to accept it’s happening.

She helps me out a lot in many way (with regards to how my condition affects me) but she just cannot physically talk about it.

I really hope your tests come back with some encouraging news and who knows (and fingers crossed) that when your husband has something more tangible and concrete to work on then he may be able to step up to the plate.

Im sorry to hear of your diagnosis and I wish you the best.

Forgot to say, DH is being investigated for autism after many years of us suspecting he's autistic. So it's interesting you should mention autism, OP.

I know how you feel I as diagnosed with the autoimmune disease primary billiary cholengitis after a few years of symptoms also. I was shocked that I had something that was causing liver damage and the tiredness is terrible. Get the uk organisation to send out info on the disease they normally have these and ones for family as to help them know what to expect and your symptoms. What helped me is Facebook groups on the disease and other peoples experiences they are very supportive. Tips on diet, supplements and what to expect with scans and tests.

My husband is exactly the same, completely ignores the fact that I’m gradually deteriorating. It’s incredibly selfish and I have had to get used to the fact that I’m doing this alone 🤷🏼‍♀️

Okay so he might stress about parking and take work calls while you’re waiting to be seen, but I still think it would be really helpful for him to actually go along to your next appointment and have the consultant talk to you both about the condition and the treatments and the impact it might have on your lives - coming from a medical professional, it might sink in properly?

My friend has blood cancer manageable at the moment but ultimately it will reach a point where treatment doesn’t control it

i can’t get my head round it doesn’t seem real which is ridiculous

when she lost her hair with chemo was the only time it seemed real

Hi OP, I am in a very similar situation to you. I was diagnosed with an untreatable, progressive autoimmune disease two years ago and the median life expectancy is 10 to 20 years (I’m mid thirties).

With regards to your husband, I completely understand. I just want people to actually appreciate and take seriously the very real possibility that I won’t get old, that I may get very sick and have to stop working etc, but my entire family are in denial. When I talk about this I’m called dramatic, a hypochondriac, that I’ll outlast everyone. My husband is a scientist and is absolutely convinced a cure or treatment will come out and I’ll be fine.

It is so difficult because you want people to take your fears seriously and just to recognise how you are feeling, and this response shuts things down. I did speak candidly to my mum about it and she said it was so upsetting to think of the truth that she just lived in denial and was content so long as I am presently well. My sister told me that no one wanted to hear about my condition because it was too awful and depressing, so I shouldn’t talk to the family anymore. I imagine what is happening with your husband is a self protective mechanism. It’s a very shocking thing for people to process. Could you speak to someone objective, like a therapist?

Another thing is to be careful how you interpret the life expectancy stats. The median is a large range and you don’t know where you will fit. Some people with my illness, for example, live two years others live to old age. There’s a huge degree of variability. You need to get more information from your doc about your individual circumstances before you needlessly worry.

The thought of disability and/or premature death can be frightening for partners.

Wait until you have medical information/results/prognosis specific to you, and not Dr Google, and then sit him down again.

It can take time to adjust.💐

I'm sorry your family are such self-absorbed dickheads. They sound awful particularly your sister.

So sorry for your diagnosis OP . It’s really hard to cope with I can empathise completely.

I was diagnosed with Multiple Sclerosis at 40, the first six months were the worst of my life, I was so scared, my children were still very young, I was trying to recover from a very acute inflammatory attack on my spinal cord. It was a really terrible time for our family, and the utter shock that it had happened so out if the blue to begin with. I was forever googling medical terms in any letters I received.

I eventually got to a point, where is didn’t want to live in fear anymore, I cope by taking each day as it comes. I don’t plan too much in advance, I don’t think about the future just day by day. It works for me. And I am living the best life I can in the circumstances.

my DH was very similar didn’t want to hear about it, buried his head in the sand, he worries a lot, although he would never tell me he’s worrying, particularly re my mobility, which is a problem. He never wants to talk about the future, as my condition gets worse. There is no point, it just upsets and worries us both. He helps me so much and I know however tough things get he will be there.

Best wishes to you going forward OP, keep as positive as you can, of course you need to grieve and accept this change. Good luck.