Hep C Discussion Forum

I did. A.) to friends and family who may have previously been exposed to my blood so they could be tested. B.) to people I dated; was always very upfront about my Hep. C.) I volunteered at a local Women's drop in center and would give presentations on various topics; safe sex pratices, drugs, alchohol, stds etc, and was asked to do one on Hep C; and if I could give a talk about my own experience with it. After that I kinda became to go to person to ask about Hep by some of younger generation (mine and younger) who either lived on the streets or darned near and were wiggy about going to a doctor to ask questions, or didn't know where to go for resources; got asked many a question, and aside from talking about it often would tell the person to go see a doctor, referred many to a local Hep C support group and handed out alot of pamphlets...Honestly after living with this disease for 12 years; in that time (over the course of years) I was very surprised to learn just how many people in my community also had Hep C; seems to be very prevalent in the western part of MA.... I have now moved to not far out of Boston, MA and most days due to tx stay home, don't go out much unless I NEED to...have made a few new friends out here but aside from them no one else out here knows I have it.

It's very much a personal choice whether to tell or not. For the most part, I choose not to share that info with others. My immediate family knows, and just a select couple friends know. I was diagnosed 12 yrs ago. I just completed 36 weeks of triple therapy and I continued to live my life as normal [as possible] the whole time. People I work with do not know. I only told as much as I had to...so I informed just a few of them that needed to know that I was going through "some medical treatments that would make anemic, tired, cranky, and forgetful. I also told them it was a personal matter that I chose to keep confidential." They respected that. I'm UNDETECTABLE now, and hopefully I'll achieve SVR with my 6 month labs and this will all just be like a bad dream. I'm fortunate that I've been asymptomatic, so until I started the drugs I never felt bad, never had to explain anything.
Just do what is right for YOURSELF and YOUR situation. aloha!

libgirl07 wrote:

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I've told a few people. Most of my immediate family knows they dont treat me different. My closest friends know they dont treat me different. I've dated a couple guys since I found out they didnt care (although now i'm having a hard time telling guys this now.. I gave up on dating for now) I will say I have told some people whom I thought were friends and they told everyone around saying it was an STD. The people who matter wont mind. Its ridiculous how we have to feel this way.. I have to goto a counselor and take AD so I dont freak out lol

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 It is a choice as someone wrote but all my life I have been an open book.. It is what its is.. I feel I've got the oportunity to educate .. I have always felt knowledge was power.. Just about everyone I know .. knows.. It's just me.. heck when I go to the dentist office they ask me tons of questoins.. You being involved in church this could be your opportunity to teach the lesson about juding? You are going to find out more folks have Hep C than you ever realized and hell it doesn't matter how you got it.. stand tall..                                  peace and love MJ

Telling people you have Hep C is a personal decision.  For me the decision to spread the word was easy.  I was diagnosed with Hepatitis C six years ago. At the time I had no clue what HCV was.  After much research, I found it hard to believe that this was possible. I had no tattoos and I had never used a needle or had a blood transfusion. I kept asking myself, how could I have contracted a virus that was killing my liver, killing me. My life seemed to be so far removed from anything that I had read. The more I investigated, the more I realized that research for HCV was lagging and treatment options reminded me of something out of the dark ages. Depending on your geno type, the chances of beating the illness seemed to be slim..the current treatment options were a fate worse than death. It was after that I decided I could not sit back knowing that so many people would lose their battle to Hep C.

My goal is to bring about awareness and education to help prevent young adults from derailing their lives and people in my age group to get tested. I work to raise the visibility of HCV with those who injected only one time or many years ago, those sharing needles or other equipment used for common cosmetic procedures (ie., botox, steroids), people who received body piercing or tattoos done with non-sterile instruments, persons who received blood transfusions pre-mid 90's, persons who have shared a toothbrush or razor and service professionals that have worked in areas where there is blood-to-blood contact such as manicurists, barbers, athletes etc.

When I was diagnosed I had to find a positive side-a purpose, that is just me.. I was determined not to allow shame or fear to stifle my efforts and to change the stigma of HVC not allowing a repeat of HIV/AIDS with the hope of diminishing the disease overtime. Six years later there has been nothing but support and acceptance in my effort to bring about awareness.. 

Thank you for reading this - I am sorry if it sounds like I am on a soap box, preachy or philosophical. It is written from the heart of someone with great hope, who is living with Hep C and who has tears running down both checks right now...

Thanks everyone for all the support that you provide..

-- Edited by Karen on Saturday 13th of October 2012 10:56:46 PM

Started treatment in 2008  only told my immediate family who live with me or I see a lot and only my cousin at work

I hid it till 2012   I had 2 fears   

(1) the stigma use of drugs in 70's 80's also people using hand sanitizer every where I been ( that would really pis me off) 

(2) Gossip as the story get's told it will change as it goes       People I don't want to know would find out       I don't care so much anymore   Everyone at work knows cause I took a leave  So double that number I don't mention it to anyone unless they ask  I was surprised to find most were only asking How am I doing

In the 12 step thing they recommend you make amends (( So long as it doesn't cause pain and problems )) Some things are better left where they are  I think it's the same here If you know its going to cause Sh** don't do it. and when someone asks Wait and let them talk and thank them for their concern you don't owe an explanation. I say I'm doing better I'm still in treatment Doctors are saying I an doing good and right were I should be so all looks good. 

Note : this approach is not for everyone and not meant to be    I do feel much more free now  This forum helped me get there   There are still a lot of people who don't know yet  I'm using the the don't ask don't tell policy  I'm NOT going to wear a HEP C tee shirt  But I am seeing that most people want to show concern for me If there are people who run away   we'll that's their problem

I pray that anyone about to tell that it go's good  If you do get a bad reaction it's not you examine where that's coming from

Good luck everyone

BillS

 

 

-- Edited by Bills on Saturday 13th of October 2012 01:23:43 PM

I not only told everyone who needed to know, I also went on the local TV news and did a newspaper story in the local paper, which was sold to papers all over the country. Probably risky, but it worked out OK.

DJ wrote:

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I told my daughter I am sick and have the beginnings of liver cancer and will be on chemo.  I wasn't ready to say out loud I have Hep C.  I also asked my daughter (who is college age) not to tell anyone.....well she did tell and now my friends and church knows.

I was just planning to deal with this quietly, and I feel bad for not being completely honest about it.  But I was so afraid of how people would react.  Like they may not want to be around me. 

So have you guys told people and been open about it?  Or have you kept it a private thing.  Right now my doctor and her staff and my husband are the only ones that know it is Hep C.

I don't know what would be best.  I was thinking if I was cured I might share it with others so that people could find out it can be cured.  But if I am not cured, I am worried that people might avoid me. 

So can some of you share what you have done?  Thanks!

 

 

 

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 omg dj. nooooooo. dont say cancer. this is why there is a stigma. i tried telling my boss to start with that i had a blood disease, but needed chemo, they were HIGHLY concerned. and eventually my boss said, 'whats it called' thats when i had to be honest and im glad i was...

i know we dont need to tell all and sundry the truth, but please be honest with your family. i beleive that will cause them undue worry.

 

I think folks need to make their own decisions on this, however there is a saying "that we are only as sick as our secrets" And if keeping it from others ends up with you being more isolated or self stigmatized , I'd encourage you to reexamine it.

I've taken the path of trying to lift the stigma and open the door to others to get testing. So I'm open about my Hep_C and my past IV drug use. Im not suggesting wearing it like a flashing neon jumpsuit or carrying around a sandwich board asking "Have you been tested today". When an opportunity comes up to share or in someway educate others; I try to find an appropriate way to be open and honest. Hep-C gets added to the social "conspiracy of silence" that surrounds every disease that might imply some degree of moral waywardness (In my case it was a double dose). Its time that we get our heads out of our butts and start living in the real world.

Wife always knew,family, told only people I thought I could trust at work. This decease is so big now everybody is aware that I know about it. I can only amagine how big it will grow with the explosion of body art/ modification

People are misinformed. I never hesitated to tell people what condition was once they asked. It wasn't my job to educate them, it was my job to survive tx and keep my own positive attitude.  If others want to deceive and live in the dark so be it. All my son ask me was "Are you gonna die?" My reply was "no time soon" and he was cool with it. He was 14 at the time. Life can be tough. Being in fear of what someone might perceive as a negative about me isn't my business or my problem. I had enough to deal with while on treatment, no need to stoke the fire. 

 

Thanks for sharing everyone.  I think I know how I got it.  I had a blood transfusion during surgery in 1979.  Other than that, I have never used drugs (unless a doctor or dentist was giving me a shot but they don't reuse needles...at least I hope not).  I have been with my one and only love all of my life (we met at the age of 5 and married at the age of 22).  I have lived a really boring life.  So looking back, the blood transfusion must have been the cause.  My husband doesn't have it though so that is a blessing. 

I would have told my daughter the truth except she is not good at keeping secrets at all.  She wants to share things at church and ask for prayers and after I told her to keep it a secret she went on a mission trip with our church and duringa  sharing tmie told EVERYONE (of course she thinks it is cancer....I actually never said I HAD cancer, I said I had the beginnings/start of cancer which the visus can start cancer....but she concluded I have cancer and after she told everyone when I asked her not to, I just don't feel safe sharing the truth with her).

I have two daughters, and honestly I don't think they would figure out what I have

..but my one daughter's boyfriend who is here all the time is pre med and I would not be surprised if he figures it out eventually.

But if my girls could keep this just between all of us, I would have told them already.  But I know it won't happen.  Heck.....they tell me stuff about each other that is suppose to be a secret between the two of them!  They are NOT good at keeping secrets. 

I wish it was not something that was so feared by others.  But I really don't want to be the center of gossip/talk.  I just want to deal with all of this and be done with it (hopefully). 

But thank you all.  It so such a difficult thing.  I have read a lot of comments on many different boards (but this is the board I am most comfortable with) and I remember one woman say that if you don't tell....you can always change your mind...but once you do then you can never take it back.

I am just so glad I found you guys.  It would be awful to have NO ONE to talk to about this at all!  Thank you so much!

 

-- Edited by DJ on Friday 12th of October 2012 06:12:28 PM

-- Edited by DJ on Friday 12th of October 2012 06:13:13 PM

-- Edited by DJ on Friday 12th of October 2012 06:13:59 PM

I have always felt honesty is the best policy. Pretty much everyone in my life knows I have this, and like Michale said...mostly no-one gives a rip.!!

As time goes on, more and more folks are going to find out they have it, and it doesn't really matter how it got there. I hope you are able to find support in your church, if anywhere...they should be there for you.

Good luck, Iris

Hi , eveyone in my family  knows and noone gives a rip. My 18 yr old has known since 04. He talks about it with his friends, who dont give a rip either . One told me he was sorry to hear about my liver. My best friend and her family know. My priest and church members dont know. I dont take communion wine at church for fear of offending anyone in event that I disclose.  Of the people that know, I usually bake for Christmas gifts and nobody has ever turned down fancy baked goodies.  Even if a person got this from a needle as a dumb kid, dont live in shame and guilt. Are you still that dumb kid, well yeah, but are you still living the lifestyle of that dumb kid? NO!!! We are going through enough grief , no need to beat up on ourselves. And if the news is correct, there are alot of boomer out there who are infected and dont know it , so the stigma is going to take a major turn as the boomers get Dx . Then new and better Rx will be found because the public will demand it for parents and grandparents for old uncle Joe, for a spouse or a friend.  Michaele

I told my kids I have hep c from a fight I was in almost 40 years ago. They don't need to know any other details.

I told a few close friends that's it. I did not tell people I work with. No need to. It's nobody's business.