It's been almost 8 months since I started facilitating this support group for The PBC Foundation. For over 7 years prior to that I started and facilitated a PBC support group for The American Liver Foundation. Since that time so many true friendships have been made that likely never would have happened otherwise. People have connected that I know will remain friends forever. If not for the PBC group, I never would have met Robert - a true friend in every sense of the word.
Staying connected is so crucial. The friendships are almost a bonus that is given to us as a result. I hope when you see a post or a reply here that you can truly relate to that you reply back. We all need validation on how we feel - we need to know we are not the only one who feels that way. In this particular group, I know you use 'handles' and not your real name. I hope some of you can still reach out to the 'handle' in a personal chat or separate email. Is that possible to do on this website? Having a connection with even one person can so enrich both of your lives. And who knows you may have a friend for life. Going thru all the ups and downs with PBC can seem less scary with a friend.
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DonnaBoll
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loved reading this. Shortly after I joined this forum I made friends with a member in Denver. We chatted daily through messenger. She was pretty sick when she was finally diagnosed. I saw her go from a beautiful lady to very sick. She passed away a couple years ago. I also am friends with a member from Ireland. Another sweet lady. My third friendship is with a lady in Amarillo who is a retired RN. She has been an inspiration. She isn’t on here much anymore. She was being treated for PBC but after a couple years her hepatologist discovered she didn’t have PBC, but her liver was damaged from Lipitor. So she is no longer treated for PBC. We all have interesting stories.
Just making the connections though, right? Knowing we can reach out to someone who understands. Even when we were sitting here last Saturday with some of the members from my old group, there is a real sense of belonging - all different stages in their lives and PBC journey. We talked very little about PBC. We just talked about our lives.... we are so much more that PBC, aren't we?
Absolutely. And what I think of often, is the feeling of isolation. There are cancer support groups everywhere but PBC is just so isolated. I asked my hepatologist once about why we cannot be connected to other PBC patients. He said because of misinformation that could be exchanged. Isn’t that sad. I understand HIPPA, but beyond that it’s a little ridiculous.
What a terrible answer to give you! I hand delivered info about my support group to a hematology group here in St Louis who were part of a huge transplant center. Not one person I truly believe was ever given the info. You are so right about groups for every thing. I think doctors need to realize many of us are 'informed' and know where to go to get the right information. We sure don't get much from them. I have to believe that when folks found my group, they felt they benefited from it in many ways.
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