I just want them to understand and don’t be so harsh on me and on other people who has serious problems like this. That’s all… You know, people can be so cruel sometimes…
Evrim,
Never has anyone been "cruel" towards my fiance and I about the condition. I find it difficult when people treat us different to be quite honest. To be treated as a 'sick' person is the worst. To each their own though. Best of luck in your dilemma.
It’s not just about the condition… You’re lucky. There are a lot of insensible people around and there will always be.Is it a dilemma? No, it’s not…
I have found that the older I get, the easier it is to deal with other people's responses to my condition. For one thing, older people have more chronic medical conditions so they understand and empathize more readily. Young people, on the other hand, 20s through 40s and even into 50s, have a much harder time "getting it" because they are usually fairly healthy and don't know what dealing with a chronic illness (that has the potential to get pretty bad at times) is all about, how it can change your life in so many ways. So, Evrim, if you're a relatively young, you're going to be surrounded by people in your age group. They may seem insensible, insensitive, uncaring, but honestly I think they just don't have the imagination or empathy and compassion to understand what you're going through. They offer you alcohol continuously because drinking may be part of their lifestyle. A simple "no, thanks" each time will suffice.
This will get easier over time for you. PSC is hard for anyone to understand and you're still getting used to it, sounds like. Hang in there!
People will not get educated about PSC unless you volunteer to tell them about it. I told people I had a rare, auto-immune liver disease called Primary Sclerosing Cholangitis, that was slowly destroying my liver, probably from childhood. It is not caused by alcohol or drug use. It is not a sexually transmitted disease or Hepatitis. My liver cells were being destroyed by bile backing up in my liver which is toxic and kills liver cells. I would tell them that doctors are trying to manage the disease, but the only known cure is a liver transplant. Without that option, PSC is a fatal disease.
You will be surprised how many people respond in a positive way. They show compassion and curiosity. Knowing you are willing to talk about it, makes them ask more questions. I told people this information was not private. They could share it. I had a caring group of people that supported and encouraged me all the way through my liver transplant in February 2012.
Please click on this link to read about my experience. http://www.caringbridge.org/visit/paulandkathy
Also, you can learn more by looking up "Transplant Village" on Facebook.
My story attracted a lot of attention. A chapter in a book, "Hope Conquers All," by Sonja Mehring, (available on Amazon) was written about my experience. I believe that happened because many people learned about my disease and we had almost 5000 people following my transplantation and recovery.
Dear Friends,I want to share something wtih you. A few months ago, I was at work and talking to my doctor on the phone. We were discussing my test results and I wasn’t happy about it. My face was frown. One of my collegues saw me and said “Are you talking to your boyfriend? Is he saying bad things to you? Ahahahahaa…” He laughed. I was frusturated and wanted to cry out loud: “Are you mad? I have a serious problem here! Can’t you see that?”. But I didn’t. He knew about my condition. And I’ve decided he’s a bad person… Isn’t this cruelty?..
Also, in my country working people’s rights are not as good as in US and Europe. I have a lot of friends who were kicked out from their jobs because of their pregnancies or health problems. It didn’t happen to me yet, but what if…? How can I afford my health expenses then?..I just want people to be more sensitive but I think I’m asking too much.I’ll try to keep my problems to myself…Thanks for your time. Take care…
My family is really supportive, actually they are the only ones who really understand and support…
Thank you very much, I’m happy I’ve found this group 
Take care…
It is unfortunate that you have co-workers that act like bullies in the school yard. I'm sorry you have to deal with that. If you feel that your job could potentially be in jeopardy because of your condition, perhaps not sharing the information with co-workers would be wise. PSC can become very expensive with doctor visits, procedures and medicines. Protect your legal rights and your position at work, if possible. We chose not to disclose personal information at work. It seems to work well. At times it can become uncomfortable when people see the jaundice showing or when missing work but just remember you have a home to go to where you are understood and accepted. If there is no need to explain, maybe it's best you don't to protect your job. This site is a good place to connect with those who understand your journey.
Hello Stephen,
I feel fine thanks, I’ve focused on my family, a few good friends and my work. I don’t talk much about my condition. I try to meditate everyday. I think it helps…
Thanks for your concern, I hope you’re fine too.
Take care, stay healthy and happy,
Evrim