Telling people about your Hep C

[1oftheclub222]

has anyone had a bad experience with telling people about their Hep C?  I need to tell my ex husband, historical data would tell me he will respond unkindly or think I had done things I have not...I may just be being paranoid, but I am more worried about this part then doing the 6 months of treatment...

What experiences have you  had, good or bad...

[beeblessed]

Hi there.  I found a person's blog that might help you:

http://heprat.blogspot.com/2010/02/telling-your-family-you-have-hepatitis.html

http://heprat.blogspot.com/2010/02/how-i-told-my-wife-i-had-hep-c.html

I haven't read the entire pages but thought he raised some interesting points.

[domusic]

Ya might let him know the way my doctor (bless her heart) told me in 2006. She said I tested positive for HCV antibodies meaning at some point in my life I had been exposed to Hepatitis.

Know big deal I thought, with my lifestyle in the past that wouldn't surprise me. So what I have the antibodies, I must be immune to it.

I researched it a little (found Medhelp), thought about it a lot, considered what if I had it. Still not too alarmed. Well it was three months later that they got around to doing an RNA test. Confirmed that I did indeed have HCV. By that time I was ready to hear it.

I think my doc planned on breaking the news to me that way. She's the most caring doctor I've ever had. (VA Hospital, Cleveland). I appreciate her method.

I treated with double therapy two years ago and was a partial responder. I start triple therapy in about three weeks (Boceprevir).

Good luck to you.
Domusic

[ceanothus]

Sounds like a plan. Try not to fret over whether you might have given it to him - the odds are so tiny as to be negligible.  I've been married since 1976 and got the virus in 1984 but didn't know about it for many years. My husband  and I had many years of obliviousness in which he was even exposed to blood now and then, and he's still tested negative. I worry about it if I think I might bleed on someone (and I always warn dentists and phlebotomists) but other than that I don't worry at all about spreading it. 

[1oftheclub222]

Thank you for all the comments.  I think I have decided to wait till I get the results back from my biopsy and get my kids tested, I also have printed out information on Hep C and how it is transmitted...then I will have all the information I need to present to my ex and maybe ease his fears a bit...when he gets scared that is when he gets all crazy and starts lashing out...I am suppose to get a call today to set up an appointment for my biopsy, so hopefully I will have everything I need in a few weeks.  I guess that is about as prepared as I can be and that is all I can do.  Sometimes i just need to realize I can't control all outcomes of every event, ha...I am guessing this whole experience will be a great lesson in that area...thanks again for all the input, it was very helpful..

[christinaf28]

its almost 20 years that i have this disease and the worst part of it its the fact that i have to hide from lots of people as i had bad expierence by telling to some people ..real love ones will understand but lots wont ..they think you are damaged and contaigous ..even though u know u wont pass then anything ...i still believe iam damaged and its hard to take it all ...my biggest worry its to tell people and thouse people tell other people behind my back so what i do i keep my mouth shut ...this days and only tell people who i know this wont change their love for me in anyway shape or form ...hopefully ur husband will keep his mouth shut ..but i dont know how will react ..but iam sure u should give him a paper with the whole information...good luck

[ceanothus]

I've known I had HCV since whenever it was that the first tests came out. Since then I've freely told it to anyone whenever it seemed a natural topic - I've told it to all of my family, all of my close friends, a large number of acquaintances and a few total strangers. I don't go out of my way to bring the subject up, but when health issues do come up I don't find this one particularly embarrassing or shameful.  I've never had what I would consider a negative reaction. I'm a pretty sensitive person too! Have I really been extraordinarily lucky? I do have an early blood transfusion to blame- would more people be jerks without that? If that makes a big difference in how people respond, then I would just suggest that everyone develop a "nice" story about how they got it and stick to it. I don't think I could handle the isolation of keeping such a big part of my life a secret.

[indy531]

I have chosen to tell only immediate family members-even then, my DH is the 'Voice of America', which I resent. He feels I owe the 'public' at large an explanation for my ill health (really just sx), while my way of thinking is to ask people to respect my privacy at this time. The 'stigma' established by CDC of a Hep C sufferer has been in the past treating people like pariahs ( IV drug users, STD ridden), which is a fallacy at best. Only you can decide what approach is best for your peace of mind.

[Alive33]

well firstly no one told me, the Doctor did. The way I see it is put yourself in the other persons shoes, is it better to hear it from a Dr? I have spoke with so many Drs and I have never truely found one that cared more than a good friend.

I chose not to share this disease with my friends because IDK how to. I tried with my family but they didnt get it. So in the end you willl just keep pushing people away if you dont explain the reason why you push them away and you may end up with only a psych or Dr to talk to about it.

Also theres a down side, I told someone once and they told complete strangers, it was weird to hear it from someone who I had not met before but knew me through that friend. Some people are more grown up than this not all people are alike.

[fretboard]

I have told most of my family and close friends.  I don't tell anybody at work b/c I've had bad experiences trying to tell people there.  Most of the public I come into contact with at work have their heads in the sand about HepC.  It seems like nobody knows anything about it, but everyone seems to have an opinion about it.  The opinions they have are terribly wrong and most of the time cruel.  It's hard to believe sometimes that these people have normal fully operating brains.  Some are such dunderheads.  IMHO, it's best to keep HepC to yourself.    

[jerialice]

you guys are great! i been dealing with this for 20 years and it just is what it is. i found the emotional aspect of this disease is half of the challenge. I am amazed at the people around me who also have it, as well as those who i can count on to understand.

[belle19]

i've told all of my family and friends.  not one bit of weirdness from any of them.  if anything i found out that most of them already knew someone who had it and treated it.  some successfully, some not.  good luck to you with whatever you decide on how to tell your ex.  he sounds like a jerk to me.  best wishes.  belle

[orphanedhawk]

Hmmm, is it possible to give him some printed information?

So, maybe you could tell him you found out you have a virus, it's possible he could have it and it's important he be tested.
Then say, something like, "  Here's some information which might answer any questions you have."
Give it to him, as you're saying good bye.

The idea, is to educate him while taking you, a possible emotional trigger, out of the picture. Give him time to read, and think without you there for him to possibly blow up on.

He might surprise you, and remain calm.
When you split up he was angry. Now he's used to it.

Good luck in however you decide to handle this.
OH

[JasmineT]

I know when I was diagnosed last year spent months thinking of all the little incidents in my life that could have exposed me.  It was exhausting just doing that to myself.  It sounds like your ex may do this to excess and nothing productive would come of it.

Some ideas
Have some facts available
- you are not dying
- there is a cure
- it is extremely unlikely to transmit this sexually
- chances that even a mother will pass it to their unborn child only 5%
- if your child could have this then you may wish to confirm whether they do before talking to the ex husband
- it can only be transmitted when someone's infected blood is exposed to an open wound, blood to blood
- if you do not know how you got it you might just decide on one likely event in your life and stick with that so he is not stressing all the worse things he can imagine

[1oftheclub222]

Yeah, that's why I want to tell him, so he can get tested.  I see him every other week when he see's the kids.  We meet half way, he lives about 2.5 hrs away, so we meet in a parking lot and talk for about 5 minutes or so before he and the kids take off.  Probably not the best place to talk to him.  He desn't do e-mail really, will probably have to call him and tell him, but that seems so impersonal.  At least if he gets weird on me I can just hang up I guess.

When we split up, he accused me of a lot of things that just weren't true or were exaggerations...and told everyone else in our town too, as well as my kids...it wasn't pretty, but we get along much better now as long as i don't rock the boat...this just might rock the boat...

[orphanedhawk]

I've had  few problems with people's responses, maybe because of the part of the country I live in.
Most everyone I've told, tells me a story about someone else they know who has it, or did treatment for it.

Sometime, people ask how you got it, usually just from their own ignorance about hep C.

If you are in email contact  with your ex, you might consider emailing him. Get  good information, from reliable web site, and send it to him.

This gives him time to read and think without you having to face him and his first reaction.
And it passes on information from a source other than you.

BTW: He should probably be tested.

Good luck,
OH