How to get your children to understand

[African2Irish]

For those that have children, how did you explain your condition to them? I have 3 aged between 12 and 16 and all 3 are Neuro divergent. They don't really get why things have to change etc and how serious this can be if not managed correctly.

[AyrshireK]

There is some information about how to support a child when a parent has an illness at this NHS page:- uhsussex.nhs.uk/resources/s...

As regards AIH though it is very much an illness you will learn to live with - once the initial diagnosis phase and treatment truly kicks in it shouldn't impact on you or your children too much. Ok you may be a little more fatigued (I know at the moment this is a big symptom for you but you are in the early post diagnostic phase and on very high dose steroids). You may need to listen to your body and rest which may be something the children might not understand.

If your liver is still fairly healthy even with the AIH there is a chance that successful treatment will keep any further damage from occurring. Obviously there is the potential further down the line that if the liver has sustained damage then transplant might come into the equation but for now you don't seem to be at anywhere near that stage and not everyone with AIH gets to that stage - there are folks on the AIH Facebook page who are still fully functioning despite AIH and cirrhosis diagnosis's some 30 years long.

Katie

[Monicka]

Hello! I have four kids now aged 24,22,19 and 17. I never tell them about my conditions unless absolutely necessary. Last year I broke my leg and had to wear a splint so obviously they knew. But I’ve never told them I have any liver issue. I see my duty in protecting and supporting them and I don’t see any point in burdening their brains with just another worry. Four years ago I just told them I was going to stop drinking alcohol because I didn’t like it any more. And that was it. I don’t inform them about my doctor’s appointment or progress of my illness. But that’s my point of view which of course may be different from other people’s opinion😉

[Ewife]

Hello! We have 3 children who were aprox 11/17/18 when husband got so sick. Different situ as it couldnt be hidden - they all watched him nearly bleed to death!! We tried to shield them as much as poss but in this day and age it isnt possible to stop them googling which is far worse. Everytime the youngest played up it eventually turned out he had picked bits and pieces up without us realising, and we wished we had taken time to explain properly to him. He also has ADHD and it caused havoc with his behaviour in school. We ended up having help from professionals and this proved an absolute life saver. Try ringing round childrens helplines etc and see what free advice you can get.Atb

Ewife

[BritishLiverTrust11 Moderator]

Hello

In addition to replies from other forum members, you may find this section on our website helpful:

britishlivertrust.org.uk/in...

Best wishes

British Liver Trust

[Supportinghubby]

Our daughters are 14 & 12 and our eldest is autistic. My husband has cirhossis but luckily he manages very well with his condition so it doesn't impact on our lives and we haven't told them about it. They were only young when he went into hospital and was diagnosed (6 years ago) but they do know that something was wrong and he has regular checks and doesn't drink alcohol but they have never really asked for details luckily. I am nervous about when they do because my husband is a very positive person and refuses to google anything but I know they would and it would scare them!

When they get older, if they ask we will tell them but be positive that people can live with it & there will hopefully be the option of a transplant of it deteriorates. It is very tricky, especially your children being neurodivergent but there has been some good advice shared.