Thursday Thoughts

[DonnaBoll]

How and when did you tell your friends, family, or colleagues about your diagnosis>?

Is there anyone you haven't told?

What were the reactions you received?

[4pjx__]

I told my husband, kids and sister. They all knew something was wrong. I had been to the doctor for something else and she said I have cirrhosis. They knew about that because I was a pretty good wine drinker and I stopped drinking. So when I told them they just sort of gave me a dull stare like “didn’t you just pull up the bad poker hand?” I’m sure they thought better me to have it than them. One of my daughters ran right out and got a blood test. She had a bad itch and was sure she had it too. She didn’t have it though. It was allergies. Turns out she allergic to everything except dust mites and cockroaches!😀 Nobody asks me about it directly, my husband rolls his eyes when I bring it up. He’s always been in denial about the seriousness of it. I don’t look sick. I don’t act sick. I go to the gym 4 or 5 times a week. I do feel tired though quite a bit and my hips and knees ache a lot. I don’t tell most people. I have told a few close friends. I guess I mostly worry about people judging me because it is a liver disease and I don’t want them to think I had a drinking problem It just isn’t worth trying to explain it to people.

Pam

[Samanthaann in reply to 4pjx__]

Agree to all you said about trying to explain

[DonnaBoll Administrator in reply to 4pjx__]

Thanks for sharing such an honest answer. It isn't easy. The preconceived notion of any liver disease being alcohol related is so prevalent. Giving an explanation even when you do mention "PBC" is just hard to do. No one really understands. I hope in the future health care as well as the general population can get past that alcohol association.

[exy21]

I had a nurse double glove when I said I had AIH/PBC and kept asking me how I caught it! So no I only tell close friends/family on a who needs to know basis. Such prejudice towards any liver condition. I hear it all the time people's "opinions."

[DonnaBoll Administrator in reply to exy21]

I was just talking with a woman yesterday on a ZOOM call about the narrow mindedness and lack of knowledge of health care workers. Such ignorance! I am so sorry you had to experience such a demeaning situation. There is so much more work to be done for educating the docs, nurses, and general public, This is one of the biggest initiatives from The PBC Foundation.

[Liz_K]

I too have experienced demeaning reactions 😟 even from my own doctor (I refuse to see him now!). That was over seven years ago after seeing him for a nasty gash on my leg in a gardening incident needing a tetanus injection and a complete blood test - on which my LFT's were high. He didn't follow that up with me until I visited him about a year later just for a certificate for time off work with flu. He then casually mention my high liver lft's and when I queried why, he shrugged and said " probably alchohol, drugs, etc. 😬!! I then requested another test thinking it must be a mistake as I rarely drink and never take drugs! Again - he never ever followed that up with me, so I assumed all was okay as I had no symptoms. So three years later after visiting my now regular "new" female doctor for an unrelated ladies' issue (and another full blood test) she showed concern and referred me to a hep specialist who confirmed PBC (which like many, I knew nothing about and of course made the mistake of googling and thought I was doomed! 😟) Even after having my first Fibroscan then 7.3 the operator remarked "just go easy on the alchohol "😬!! Certainly such ignorance! Definitely more educating needs to be done. I am so pleased I have found this site and BIG thanks to the PBC Foundation 😊💐

[DonnaBoll Administrator in reply to Liz_K]

People who have a disease that the 'general public ' understands, have no idea how difficult it is not to have people really know anything about what we are faced with. They make horrible assumptions without knowing any facts. It can be hurtful and so demeaning.