This website seems like a great resource. My boyfriend was very recently diagnosed with PSC (already known to have UC). We’re both in our early 30s and just starting our lives together. I have found the diagnosis to be pretty devastating, though he is actually more circumspect. We are fortunate in that I am a physician (in a completely different field) working in a major academic hospital with a large liver clinic and transplant centre. However, I am just terrified that we won’t be able to live a normal life with this disorder. He is asymptomatic right now and I’m hoping it stays that way for a long time, but I think coping with the uncertainty is the hardest part.
Thanks for listening.
Hi Seagull. Welcome! I’m so sorry your boyfriend has been diagnosed with PSC, but don’t give up! The uncertainty is definitely daunting, but there is plenty of time to enjoy life. I was diagnosed almost a year ago and it has taken me at least 6-9 months of feeling like I was walking on egg shells (just expecting to have something terrible happen that would land me in the hospital again) and thinking about PSC constantly, before I am finally relaxing a little about my diagnosis. I’m trying to plan a cruise for my husband and my 25th Anniversary. A few months ago, I was afraid to travel at all. So, hopefully, you too will find that after a while the diagnosis settles in and that he can live life and still do things you both enjoy doing together.
Thanks so much for your kind message. It is encouraging to hear that you have been able to move forward. I’m sure that eventually PSC won’t be at the forefront of our minds and we’ll be able to keep living our lives. I’ve never been good at taking things one day at a time but I’m going to try to learn! Congratulations on your anniversary and I hope you have a wonderful time on the cruise!