How do I talk to family about diagnosis?

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New Member

Date Joined Mar 2009
Total Posts : 18
   Posted 4/15/2009 10:01 AM (GMT -6)   

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?

Pink Grandma
Veteran Member

Date Joined Nov 2006
Total Posts : 2445
   Posted 4/15/2009 10:54 AM (GMT -6)   
Good morning FinnstersMom.

I am the type of person that I want to know what I am up against. I am not the type to stick my head in the sand and pretend it's not there. On the other hand my husband didn't want to face it all. I had to get in his face a few times to get him to comply with the doctor's orders.

It's true that they may not know how serious it is............and it also maybe that they don't want to know how serious it is.........was it hard for you to accept? Sometimes it is just as hard for family to accept.

If your family is close......pick the one that you are closest to and explain everything. Or maybe have them all over for dinner or something and tell them together so that they all get the same information.
Only you know your family's dynamics.

I can only tell you my experience with my husband's family when I told them that he needed a transplant to survive. Now his family was not close at all.

His Estranged Daughter: Cried and came to visit and called frequently. (Lived about 700 miles away.)

All the rest lived in town. Here is what I got back.

Mother: He's not as sick as he is pretending. (I went to every appointment from day one.)

Brother: He brought it on him self. (What difference did that make?)

Sisters: 2 of them kind of ignored or pretended they were not told. 1 of them cried.

His mom and oldest sister would call occasionally and talk to him. I think that they were uncomfortable talking to they would talk to me a lot more. We didn't hear from the others very often at all concerning my husband's disease. My husband and I got more support from my family than his. shakehead Sad but true.

Good luck with what ever you decide. Just remember everyone handles ugly stuff in their own way. It's not a right way or a wrong way ..........just their way.......

Thoughts and prayers..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

Elite Member

Date Joined Jul 2005
Total Posts : 12014
   Posted 4/15/2009 4:38 PM (GMT -6)   

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'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.

Forum moderator - Hepatitis
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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