Who do we tell?/Why/Why not/Reactions

[Lucky Lou]

I was diagnosed about one month ago. Since then I have only allowed three people to know I am HEPC positive. My SO, my closet friend, and my sister. I have not started Tx. My question is this: Who did you tell and why? Who did you not tell and why? To go further, when you started TX, I suppose you found it necessary to inform more people. Who and why? What was the reasoning behind your decisions? Also, what kind of reaction can I expect from others? What kind of reactions did you experiance?I am sure between everyone here almost every reaction has been covered. I believe this will be extremely helpful to know what you guys did and why, and what occurred after.

LOU

[Califia]

You're not a leper, but it sure is feeling a lot like the 12th century around here.   New Dark Ages, anyone?   Even in "enlightened" Northern California,  the DEA is making life miserable for a few folks:

http://sfgate.com/cgi-bin/article.cgi?f=/c/a/2004/08/19/BAG9O8AC6V1.DTL

[GulfCoast]

I guess I'm in the same boat as everyone else. I've told family members and close friends. I did not tell my coworkers and all I said to management was that I was under chemo treatment for a blood disorder.

Most people are so freaked out about mortality that they really didn't ask too many questions. It really is one of the last taboos.

I am torn, as many others here, about educating the public about this disease. I feel that I should but everything is still so new and raw that I haven't come to grips with the issue. It is something that I do think about quite a bit.
Peace

[Califia]

Amen to that.   Communicating with others who are in the same boat is a comfort; dealing with people who don't get it is a real pain in the arse.  I definitely have to be feeling emotionally generous--and energetic--to take on the public relations role.  You know, over the years the question I have heard over and over again ad nauseum is, "So how did you get it?"    The gall!  What kind of question is that?   It's certainly one I would never ask, but people do it all the time.  Like it's any of their damn business.   So after a long while I finally fligured out to say, "The question is not how do we get it.  The question is how do we live with it?"     That usually causes a slight glimmer of thought ... but how far they get with it is beyond my control.

I think people are worried that it might be catching.  Like they might catch it from you. Like they might catch MORTALITY from you!   Everyone's walking around in a giant state of denial about, well, the giant state of impermanence we live in.   Nothing like liver disease to raise all the big questions.   So in this sense I think we have the moral advantage.   We are vulnerable and we know it.

[honey1616]

Lou,,,,I like you also come from a family that we don't discuss out business out in public.  That is the way I was raised and no need to cause worry to others right?  Everyone keeps bringing up the awareness which yes,,,people do need to be aware but this like you said,,,needs to be done on a much bigger scale. Me telling my next door neighbor, acquaintance etc...is not going to do that. I did talk to someone on tx and we both talked about aches and pains but other then that,,,I also don't see the point. The whole drug thing,,,I'm also getting tired of,,,Why does it matter if we got it from drugs, blood transfusion,,,toothbrush, razor,,or the toilet???  Shouldn't people be compassionate at the disease instead of the cause???

When I first found out I had this disease,,,,I cried and was in so much shock,,,I chose at time to call my mom, few close family members of course and very close friend.  When I went to my friends house and told her,,,,I need to talk to you about something and told her.  Her reply was,,,Ohhh I thought maybe you had cancer or something,,,its not like you are going to die.  Well everyone knows,,,,probably true but you know how devastating it is to find out you have it.  My friend never asked me about anything after that except one day she asked if I ever started tx and I said yes.  My sister on the otherhand that I am very close to and lives in another state,,,immediately said Ok,,,calm down and let me do some research here and see about getting you the best dr etc....All through my tx,,,She has researched interferon and knows what symptoms are because She Cares!!  Of course there is no need to tell distant relatives that you may see every few years that you really aren't that close to...What would the point be?  To worry?  A boss should know only like Fubar said if after beginning tx,,,,you are not feeling par for full days but that should be in confidence also.  Other people that have found out,,,,really don't know what to say so therefore they say Nothing...Yep,,,I probably won't tell anymore either,,,Just doing my time here and praying it all works out...The forum is a God Send for me and that is exactly what is carrying me right now!!

[Califia]

Prometheans, unite!  We have nothing to lose but . . . . our viral loads. (Hate to admit this, but my sense of humor was sick even before HCV.)

[Sam Hall]

When i was first diagnosed i told anyone i soke to for longer than 5 mins. I don't think i have any real regrets but i would say that once said it can't be unsaid. This may seem a wierd thing to say but there is a little part of me that is proud to be who i am and that must by definiton iclude this whole crazy battle with this virus. I am not ashamed.
Sam Hall