Do you tell your friends about psc?

Hi all - I’m a 35 y/o PSCer living in the Detroit area. I was diagnosed at age 30 and have been living with it secretly since then; my immediate family knows and so does my wife’s, but none of our friends.

Alcohol is typically the centerpiece of our friends’ social gatherings, so it has put a damper on our social life. I’m sure you all know how much this disease can isolate us from our peers, especially between the ages of 21 to mid 40s (?) when alcohol plays a prevalent role in social gatherings. There’s also the factor that I mysteriously had to stop drinking, so I think our friends are uneasy around me. Anyway, my question is, do you tell your friends or not, and when? The reasons to tell them are obvious but the reasons not to tell are less obvious. Some reasons not to: they will look at me like I’m dying tomorrow, they will form their own opinion that I did this to myself with alcohol (already had certain family members do this), they are generally not able to relate to someone who is sick (people in their early 30’s still think their invincible for the most part), etc.

I haven’t had a drink since before the diagnosis, I was too sick in the months leading up, and I never plan to again even if there were a cure tomorrow.

Leave your thoughts or questions, I feel like this may be something we all deal with at some point and hopefully more than one of us will benefit from this post.

Thank you!
Eric

I’ve matter of factly mentioned that I have a bile duct disorder. It seems to be enough.

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Eric,
If these are friends that you value very much in your day by day living, by all means, I would tell them. The more honest you are with them now, the better it will be for you when you need them most later on. It was a great comfort to me for my friends and my family to know as much detail as I could share with them. I believe it also affected my own mental preparation of heart for the transplant to come later on. When you have dear friends that care about you, they will do all they can to lift that heavy burden of life when you just can’t do it yourself. I wish you the very best in your ongoing walk with PSC.

Mark

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Hey Eric,

I understand the hesitation. It took me a few months to tell my family and I’ve only told my closest friends; for the reasons you’ve mentioned. However I do still drink socially so I haven’t had anyone question why I’m abstaining from alcohol when I’m with others. All of the studies I’ve seen said low to moderate consumption doesn’t seem to affect the disease at all, so I’m still out here living my life.

Your friends will handle it well if they’re your true friends and only want what’s best for you. After you say it out loud the first time to someone it does become easier.

Good luck.

Eric

It’s true in a social gathering people can’t understand if you’re a bloke and you stop imbibing they don’t even let you get a round in if you’re on soft drinks lol.
However use moderation and stick to a small beer, ale, even stout. My wife was a frequent kidney stone sufferer till she commenced a bottle of beer a day .No more stones.
Just no JD :wink:

If we discuss Heath yes I tell them. If they ask how thing going I tell them. I travel to Mayo Clinic for care and people ask why, I tell them.if they’re not close friends no. Not so much fun to be around folks that drink if you’re not drinking no matter what your age.

Hi Eric!

I totally get that the diagnosis feels quite personal. However, if you told your friends that you had a liver disease, not only would they understand their struggles but also no one would bother you about alcohol. People won’t associate having a liver disease with dying.

One area where I wouldn’t tell about my disease is at work (unless I’m fully secure at my job).

/ Andreas

At first I only told my dad and my best friend, since my mum tends to worry very much. When I finally told her she was very calm and almost relieved. She already knew something was up and not because my dad told her. So I think close friends should be told, but take your time. I has to feel right for you. By now most of family and close friends know, but I haven‘t told my colleagues or acquaintances.

Hi Eric - I’m quite a bit older than you, but when I was first diagnosed I decided only to tell a few close friends and family. But very soon after that I was sharing with more people. I’m a professional musician, and cholangitis attacks meant I had to find a replacement for shows at the last minute, so I needed to share my situation as an explanation. Many in my social circle are sober at this point, and though I’d like to have little more fun when we get together, I’m not the only one with mineral water and lime instead of a gin and tonic.
Two weeks ago I landed in the hospital with a bout of hepatic encephalopathy - very scary, though now resolved. It was a big help to have my friends calling in and sending “healing vibes.” In my experience it was good to share, although I still try to be aware of when it might not be appropriate. Hope this helps.

Hey, I’m a recently diagnosed 27 year old. So I feel you on the socialization aspect, but I decided to take a different approach in sharing with my friends.

Close ones I told them the full extent of the disease and just simply asked them for positive thoughts and energy and let them know they now have a permanent DD!

Ones who I was not super close with, I just say I had some health issues with my liver and have been actually looking for a reason to stop drinking so I could be the healthiest version of myself and I was happy that I finally had the reason to stop!

I’ve seen a overwhelmingly positive response to that, even people saying they were jealous and wish they could stop drinking.

Ccrawford, that sounds like a good plan. Glad it works!
Jeff