Talking about Hepatitis - To tel or not to tell?

[Keith_2008]

I wanted to write this post because I have not seen this issue come up. It may have been talked about before I just haven't seen it. I was diagnosed with Hep C back almost a year ago. I just started a clinical trial last week. The issue I want to talk about is whether or not you should tell your friends, acquaintances that you have Hepatitis. I find the issue a little difficult to talk about really. All my family members know I have Hep C.

This forum is an easy place to talk about Hepatitis because that's what's it's for and the people who participate are most often diagnosed with Hepatitis. We don't have anything to hide here. Most of us on this forum have one thing in common, which is what leads us to this forum. There's no discrimination here. But in the real world trying to explain to someone you have Hepatitis is like a whole different issue. They don't really understand what Hepatitis is or how it works. They have preconceived notions that it can be contagious threw physical contact. There are a whole host of issues that the general public does not understand about this virus.

I have a friend ( It's really a group of friends)of mine that I told I had Hepatitis. I typically see this friend 6 or 7 times a year but since I have told him I have Hepatitis I have not seen him one time. I'm usually invited to party's and other events and not one time in the last year have I been invited to any events. It's like once this group of friends found out I had Hepatitis they just want to stay clear of me. I get the feeling that they seem to think if I come around that somehow they can be infected by me. So I still talk with them over the phone and stuff. I just haven't seen them in person. I also am a member of a club and I have been able to participate in club meetings up to this point but now that I am being treated for Hep C. The drugs are having a significant impact on my health and therefore may not be able to participate in club meeting as I would normally do. How do I explain this to them? I'm afraid that if I tell them I have Hepatitis that I would be discriminated against by at least some members. I could get kick out of the club altogether. I feel like some people will just look down on me and not want anything to do with me anymore. I've thought about telling them I have cancer instead of Hep C. I think they would be more sympathetic to the situation but then I would be living a lie which is something I don't like. I'm going to have to tell them something and I just don't like the idea of telling them I have Hep C. So I find this whole situation a bit difficult. Should I tell or shouldn't I? I know I can't be alone in this situation. I just wanted some feedback about how some of you handle this situation. I think it's a good topic to talk about and I think I would find it interesting to see what other forum members have to say about this subject.
Peace!
Keith

[Trinity4]

It is a personal choice.  I've told my immediate family and that is it.  My family is supportive, but I don't expect them to treat me any differently or make a big deal out it because I really never have myself.  My coworkers do not know and I have a very high profile job.  My physical appearance has changed and I'm not quite as industrious at work as I used to be, but the people I work with have enough respect for me that they just don't ask.  I would bother me terribly for people to ask me everyday at work how I was feeling or if there was a problem to automatically blame it on my treatment.  I'm very independent and don't want sympathy from people because they think that's how they are supposed to react.  My work hasn't suffered because of treatment, my overall health has, but not my work.  I have great neighbors and when we get together I'm the same person as I was before tx.  They don't suspect anything and I have always lived by the don't ask, don't tell policy.  If someone were to ask me outright, yes, I would explain but only once and then I would expect it to be dropped.  I don't have the time or willingness to explain and educate everyone who knows me about hepc.  People will tell you they totally understand, but most people don't and the stigma doesn't go away as a rule.
We are changing insurance companies the first of the year so I had to disclose I am treating for hepc.  I told the insurance broker who came to collect the applications at my work that I did not want any of the upper management knowing about my condition.  She said by law, she can't tell.  However, when we started discussing hepc, she said she knew first hand how people were treated by others, even within the insurance companies.
I told her I currently did not have the active virus and she said well then if people at work did know they shouldn't be concerned about catching it because I could no longer transmit it through sharing utensils or coffee cups.  This is an insurance agent who deals with all types of infectious disease and has for years.  I just shook my head and politely ended the conversation.  
That's how I've handled this so far and it's working quite well.  Whatever you are comfortable with is what will work for you.
Trinity

[kickboxingmom]

Remember this.Once you say words, you can't take them back.Once SVR will it matter?
Or tell everyone and educate as you go and maybe you could make people open their eyes and get to the Dr. to be tested.
This has to be your choice.Your the one living the life with the people you tell, or don't tell. Good luck with your decisions.
Tammy

[Mary4now]

I told my immediate family and far away friends,  I even think I may have been fired for the hep c diagnosis.  I really dont trust anyone who holds my livelihood in their hands.  Its sad, but true.  i have not started tx. yet, but I would tell them its chemotherapy.  I've had cancer and that was alot easier to tell people about, because they know thats not contagious, even though hep c is blood to blood, I just dont trust to many people with my welfare.  I am just very careful with my interactions.  and really how many times do you bleed into somebody elses broken skin?  
i wish i worked somewhere where people really cared about each other.  
its all up to you what you want to do, but remember you cant take it back. you know who you can trust.  
Good luck with it all.   M4now

[Mary4now]

"I told her I currently did not have the active virus and she said well then if people at work did know they shouldn't be concerned about catching it because I could no longer transmit it through sharing utensils or coffee cups.  This is an insurance agent who deals with all types of infectious disease and has for years.  I just shook my head and politely ended the conversation."

Since when could you ever get hep c from sharing utensils or coffee cups?  Unless it was a knife that cut you then the next person cut themselves with it.  .......

[Rockerforlife]

I dont mean to sound rude or anything...but lets reverse the situation for a minute here...if you were "clean"...and someone told YOU they had a contagoius disease...would you invite them over for supper and play with  your kids...i bet you would not,,,be honest here...why would you?....i dont feel bad that people dont want o be around me...if i told them that is....its just human nature...so why put your self  in a akward situation by telling the all you" friends"

just my thoughts.

[fretboard]

I wouldn't tell anyone besides family and very close friends.  Rock is right about workplace gossip, ppl are like little kids when it comes to gossiping.  I work in the health related field and I feel that's even worse, I had to give my boss an excuse already, so he already knows that I'm on tx, but I didn't tell him what for.  I told him that I was sick and I didn't want to talk about it, and more important than that I don't want anyone to know.  It's easy enough to figure out it's from the Dept. of Heptology and all he's gotta do is look up the doctor's name.  That's ok, I didn't have a choice as I was already being documented for missing too much work.  Be very careful, who you tell as someone already said, once you say those words, you can't take them back.  good luck