How do I talk to family about diagnosis?

Hi everyone – I’m looking for some advice on how to handle talking to my family members about my diagnosis. I have autoimmune cirrhosis (PBC/primary billiary cirhossis) and autoimmune hepatitis. They know about the PBC and know I’m on medication, they also know I’m being treated by the Mayo Clinic, but they don’t know the severity and what all of this really means.

In all honesty, I didn’t realize how serious it is until I started doing my own research. I can’t tell you how informative this site has been – scary, but informative.

The problem is that I’m not sure how much to tell them. I’m in the same boat with my husband. I think he knows it’s serious, but I don’t think he truly understands and I don’t think he has done any research/reading for himself. He attends every doctor appointment with me, but tends to focus only on the not-so-bad elements of what the doctor has to say. I get blood work done every 2 weeks and if 1 number improves that’s all he focuses on and he begins to act like everything will be fine.

The fact of the matter is that it won’t be fine, I will only continue to go downhill, the medication may slow down the progress of the disease, but eventually it will get worse.

I don’t talk to him about everything I read because I don’t want to scare him; he is terrified of me being sick or dying.

My family members are surprising me with their reaction, I’m the last of 7 children and have always been the “baby” of the family and treated well by all of them, but none of them seem to be taking an interest in this and never ask me about it.

Not sure what to do next. Part of me is frustrated and angry that everyone is acting so nonchalant but the other part understands that they may not really get what’s going on. And how much do I tell them? I don’t want to scare them, but at the same time I think they need to know.

How did you all handle this? There are a lot of family members of liver disease patients on this site, how & what did you want to be told?

Finnstersmom, I am big on honesty and "telling it like it is."  How each person handles the news is their responsibility, not mine.

I've found my long-time b.f. to be the most understanding of my liver disease and the one really "there" for me.  My daughter doesn't even want to hear about it.  She wasn't even around during my bout with liver cancer.  Since I overcame that, she acts like I'm fine now, although I still have hep C and cirrhosis.  My aunt that I was very close to didn't really understand the gravity of the disease, although when I was diagnosed with liver cancer she said, "Well, you've had a good life."  She accepted it as a death sentence, whereas I did not.  (And most of my life was not good...it's much more so in the 22 yrs. I've been sober.)  She died suddenly the beginning of Dec., thinking that I was fine since I overcame the cancer.

So even if you lay it out there for everyone, each person will hear what he/she wants to hear.  Some may "get it" while others may be in denial.  It just depends on the individual and how they cope with things.  However, I think it's important that you try to make them understand exactly what is going on.