Feeling alone

I’m a 20F with moderately active PSC and I have been diagnosed for about a year now. I don’t have many symptoms at all besides fatigue and occasional brief liver pain that is usually dull and easy to manage. I was sent to the ER last week for a cholangitis scare that ended up being nothing. After meeting with my Hepatologist I feel very down about my diagnosis and my future. I love art and traveling and people and food and I love life. I don’t want to suffer and I am afraid. I don’t really know what I am asking? Maybe the reassurance that I’m not alone. I live life normally now but the knowledge that that could change is making it very hard for me to put on a brave face.