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663420 tn?1248677385

Talking about Hepatitis - To tel or not to tell?

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
71 Responses
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374652 tn?1494811435
Personally I think every health care provider should protect themselves and treat everyone as if they are a high risk, cuz I'm sure there are lots of folks out there who dont know they have anything contagious yet.
Helpful - 0
314554 tn?1337454119
Mosts reiterate my position.

I do not volunteer and I am rarely asked about my medical history.
Several of my colleagues, immediate family and a few friends are aware of my background.

I do not lie about HCV or my alcoholism (10 years sober) even though rarely asked.
-->Been there, done that, got the hair shirt.

I confirm what others have mentioned: It is amazing that even some of the most well-read and educated people can have misconceptions and stereotypes related to HCV.

I kind of had a few inaccurate understandings when I first found out I had HCV.
I was not brought up to treat people differently for superficial reasons and I have done the same for my sons.

*****I am impressed most of the members of this forum have the patience and diplomacy to educate people about the true nature of HCV. I have noticed this when a newbie who probably does not have HCV posts an honest albeit sometimes overly paranoid question that could be construed as offensive if the poster asking it were not so sincere.
Helpful - 0
179856 tn?1333547362
Be careful who you tell.  At work it's not necessary to let the general public know. Once they do chances are a good portion of them will look at you differently.

Unfortunately this disease has a HUGE stigma attached to it.  It just can't be helped and often people look at us like we just got out of the gutter from having sex and the syringe is still hanging on your arm.  Seriuosly.  You would be shocked how many ill informed people will be sure they can 'catch' it from you.

I found just saying i was on chemo for a blood disorder worked the best (although I did tell my direct reports at work my boss at the time although sworn to secrecy went straight down to HR and reported me. THen I saw all sort of 'confidential' documents that I was not supposed to see saying "is she contagious?" "can we catch this?" "how did she get this" (of course I copied them all and kept them as Hippa laws DO protect us from this type of behavior!!!!!!!!!!!!).

People are NOSEY and they will say "Oh what kind of cancer do you have???" like they have some right to know.  I just said "I don't like to talk about it but thanks for worrying". Half the time the person would then go "but what do you HAVE!!!!!!!!!!!!!!!!" and I'd just walk away.

AT least this way you are covered when you aren't doing well. It covers the nauseau, lethargy and even the anemia.

I agree - once those words are out you just can't take them back in so be careful who you do decide to tell.

Good luck.
Helpful - 0
314554 tn?1337454119
It is a good thing a lot of us are in America because

I lived in Newfoundland, Canada for seven years.
no one
from Canada would ever boast about being a Newfie

http://www.newfiejokes.net/
Helpful - 0
233616 tn?1312787196
it takes time and patients to educate the fear out of people.

I tell every health and dental worker...they have the right to protect themselves.

I told close fam and friends, and took the time to explain so they'd understand.

those who you haven't got time to do this with don't/

People in here have lost jobs because some paranoid refused to work with them..

it's better to just say I have liver disease, and am on chemotherapy for it. If they assume that's cancer, I don't correct them, I just say the liver is a hard organ to treat.
there's no point in having every swingin' **** knowing your business because A it isn't their business and B. they descriminate when there is no need to.

Now, if you club was say a basketball club, then yes you should tell, because a bleed or getting scratched by another could effect them.

But as far as telling everyone....many folks are just bloody ignorant when it comes to medical stuff..I''ve been with my hubby 10 years and he doesn't have it, and my son for 30 and he doesn't have it....so sharing kisses, bathrooms and more is not how this is transmitted...but getting people to see that is s real task and discrimination suc,ks. It's not so bad if you are contageous but when you aren't it hurts to be left out in the cold.

mb
Helpful - 0
Avatar universal
You didn't screw up - you innocently did what seemed right and it's only through experience that you learned otherwise.

I just don't agree with the view that if your friends don't understand, they're not your real friends. Life's too short to be that fussy and friends are hard to find. I wouldn't give up on them. The misunderstanding could be mutual and you yourself may have acted strangely and defensively when discussing it. I know I did when I  talked to my kids. They were confused and I was confused and the whole thing was awkward. My younger son still skirts the issue and that's a typical reaction, not the exception.  He's still my son and I love him so much.

I think your friends are most likely still your friends but don't know how to deal with it. I'd take the bull by the horns and invite them over to your place for brunch and cards or whatever you do together.

It's more important to be practical than keep our nose out of joint when it comes to friends. Try it. Friendship is a factor in succeeding in many aspects of life, including tx.
Helpful - 0
663420 tn?1248677385
I think I totally screwed up and I have already told to many people. I don't think I realized what I was up against. Not having any experience at this and just trying to be honest with people I inadvertently said things to people thinking that they are my friends only to find out I was alienated after I told them. That totally *****. I guess you can really find out who your friends are when you tell then you have Hep C. I think I'm learning the hard way, which is very typical for me.
Helpful - 0
356052 tn?1260205104
By the way Karaoke is FUN... It's funny sometimes to watch the drunks people get to the stage to sing... can be really funny to watch..LOL

Lynn
Helpful - 0
356052 tn?1260205104
I just told my immediate family of my HCV. If anyone asked why I didn't have my usual pep was due to the chemo drugs I was taking, and leave it at that. If I was pressed I said that it was a blood disorder and I had to take chemo drugs. I wouldn't got into it any more than that. Let them think what they wanted. At that time I really didn't care, of course this was during TX (I'm a Non-responder, never had a 2 log drop in 12 wks.). If people tried to push me I would completely change the subject, and would not let the conversation go back to my "disease".
You have to make your own choice of who to tell..

Good Luck
Lynn (tahoeunicorn)
Helpful - 0
Avatar universal
If you want to keep a secret.....DO NOT TELL NOT ONE SINGLE PERSON ON THE PLANET....all it takes is one....and it may even be your own mother and a spouse....the only way to be sure no one knows is to tell NO ONE...and i mean no-one
Helpful - 0
Avatar universal
I would not tell anyone except your spouse.  Society still has not been educated on this disease and if you tell you will find yourself losing friends, family, jobs and even doctors / dentists !!! good luck
Helpful - 0
Avatar universal
I know my around the machine...."welcome to the machine"....Pink Floyd...love that song
Helpful - 0
476246 tn?1418870914
You sure know how to have fun and use your puter to the fullest!
Helpful - 0
Avatar universal
http://www.gosing.com/
Helpful - 0
Avatar universal
No tv show as of yet but i do sing kareoke songs....LOL...and i do pretty damn good if i di say so myself...ill found thss awesome software on google for turning you puter into a karokee machine....and its very simple to use...ill do a song right now...and send it off to ever wants a copy...you supply your own ear plugs
Helpful - 0
Avatar universal
I do make some wild statements...sometimes i offend but not meaning too...you have to do that ...and take a chance on not getting someone coming after you with a gun....there is a fine line between hunour and insult...the trick is to play it right...without gettn a slap
Helpful - 0
Avatar universal
i am not upset kit kat.....i have happy feet all day long....
Helpful - 0
Avatar universal
Agrees, with Art I know sometimes you just want to shout it out,   because it feels, like you are walking around with this dark secret.  But honestly sometimes you just don't know how people will react.  

What ever you decide best of luck.

Deb
Helpful - 0
Avatar universal
I think you pick the people you want to tell, wisely.  You have enough on your plate without feeling conscientious about what (people say) or how people might react.  There's some good support groups out there too. Stay strong.

Art
Helpful - 0
476246 tn?1418870914
You KNOW we love you!
Helpful - 0
577132 tn?1314266526
You brighten my weekends with your sense of humour and wild statements.  You could have your own TV show!  Don't ever go changing!

Epi :)
Helpful - 0
498948 tn?1253055841
Sorry, Rocker.  No offense intended.  It was just some silliness to pass the time on a cold, windy Sunday afternoon.
Helpful - 0
Avatar universal
I hope you ladies are having a good time at my expense...enjoy it while you can...cause your day is gonna come....."you know im ONLY serious"
Helpful - 0
498948 tn?1253055841
Now I'm pulling your leg...  Ya, you make me laugh....

Its that Newfie sense of humour, it always cracks me up.  I don't think I've ever met a Newfie without a great sense of humour, its like its in the blood almost.
Helpful - 0
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