Is it fair to keep cirrhosis a secret from family?

[Dreamleaver]

Hi, I just learned a parent has stage 4 liver cirrhosis. Some family has known for a year that tests were borderline and this was a possibility. This parent has been sober for over one year and is walking 1-2 miles a day. We’re told it’s compensated stage 4 and he could have anywhere from one year to 9 years to live. They were symptomatic a year ago so it’s remarkable that they’re feeling ok. Not great but ok. In one year the labs went from stage 3/4 fibrosis to stage 4 cirrhosis. Next up imaging for a bleed due to low iron. Siblings and this parent want to keep this a secret from shared family business, community and ex of 34 years that relies on alimony . We’re supposed to grieve in private bc it’s not our story to tell and they don’t want to talk about it. Naturally this person feels shame and embarrassment since he’s never actually admitted to alcoholism. Is this fair? Does fairness matter when this illness and death impacts so many? Feeling heart broken, manipulated, and conflicted.

[AyrshireK]

This person has every right to keep their health issues private or only reveal to those they wish to. If he's stopped drinking and is walking lots and is still in the compensated bracket then there is no reason to believe he can't go on to live a long life yet.

No need to grieve in private "cos they're not dead or dying. Talk of life expectancies are only guides and there are people who live long and still productive lives even with cirrhosis - my hubbies previous consultant has always told us that he has patients on his books who have had cirrhosis for 20+ years and arn't at deaths door nor transplant needy.

The British Liver Trust has a page all about living with liver disease and it covers the who to tell issue. britishlivertrust.org.uk/in...

Those of you 'in the loop' should support the parent and demomstrate that there is no need to be ashamed, sadly there is too much stigma attached to a cirrhosis diagnosis so not everyone will be as supportive/understanding.

Katie

[Yellowsydney]

I never told anyone I had cirrhosis and was on the transplant list except my husband, kids and mum, nobody needed to know not because I was ashamed because wasn't (NASH) but it was nobody else's business and I didn't want the constant questions. My husband told everyone that needed to know when I was in surgery, even now 6 years post transplant m constantly asked if I'm ok, how are you all the time. It's a personal decision.

Hilary

[Lantana100]

Totally agree with the above two comments. My husband was hospitalised and treated for 8 weeks in 2019 with alcohol induced cirrhosis - our first inkling that anything serious was wrong - but like your father has been alcohol free for over 4 years and is living life to the full - albeit with 6 monthly scans and blood tests. Nobody but us knows and that’s how we intend to keep it. Your father’s situation is private and hopefully, with abstinence and self care, he can live a normal lifespan - and keep his dignity intact.

[Iro1]

The life expectancy figure is a guide based on others.

[Roy1955]

Tell the Ex on alimony to go and get a job!You sound more worried about how this person's health is impacting on all your finances than how this person's coping with their condition.

He should NEVER be ashamed of his condition and should be telling his "shared family business, community and ex of 34 years that relies on alimony" to shove their opinions up their backside.

If one of my children had the same opinion as you they would be out the door never to step in my house again! 😡🤬😡🤬

[MississaugaLiver]

For three years I thought hubby had simply been dealt a bad hand. I had no idea he was a closet alcoholic and as a result cirrhosis. His children, myself, family and friends had been extremely supportive with his constant hospitalization for bleeds. It wasn’t until this past July that the truth came to light and he admitted he was a closet drinker despite being on deaths door countless times. He has since given up alcohol forever with lots of support from myself and his doctors. Only our children and myself are privy to this. No one else needs to know. He lives with the shame and hurt he has caused us every day. That’s enough penance. His doctors are so encouraging and proud of the strides he’s made in the last few months!

Give your family member your love and support. That’s what they need more than anything.

[Aotea2012]

I have cirrhosis, was diagnosed nearly 3 years ago. I’m careful who I tell, not because I’m ashamed, but because I don’t want to be subject to other people’s ignorant prejudice. I also don’t want to be on the receiving end of pity. I stopped drinking on the day I was diagnosed. Haven’t touched a drop since or got remotely close to it. I feel better than I have in years. My bloods are normal, my scans are clear of any nasties and my varices have done a runner. I follow a careful diet but not so strictly that it makes me miserable. I exercise and keep as fit as I can. I used to get very excited about life expectancy at the start. I’ve slowly relaxed on that as I’ve come to understand more about cirrhosis. I’m doing everything I can to remain well and intend to live a good few more years yet. My family know…and think I must have had some miracle cure…because other than not drinking, they’d be hard pressed to identify what’s different about me. I’m working in a demanding job and looking better than I have for a long while. No alcohol has done wonders for my waist line and complexion. It’s my business because it’s my disease who and what I tell people. There’s nothing for my family to get concerned about…I’m looking after my health better now than ever before. To be fair to them…they never have judged…just supported. My brother always asks how my six monthly check has gone as he’s interested and wants to demonstrate care. I know for a fact that my family are not wringing their hands in despair. Quite the opposite, they have just been celebrating another Xmas with me and take the view that no one knows whats around the corner.

[Kingbilly3]

it’s surprising how fast it comes on,

I was told borderline cirrhosis dec22 then march 23 told I have decompensated cirrhosis , hope your parents gets well soon