The truth about having HepC?

[fretboard]

I've been wondering about how the "normal" or "regular", public feels about people infected with HepC.  It seems to me to have been shoved in some corner somewhere, like out of sight, out of mind.  I have a very good civil service position and I work with people in the medical field, also unfortunately for me I used IV drugs in my past so I have only mentioned it one time when I was working for a different Dept., back in 2003 when I became "toxic", and I needed badly to justify my absences.  I don't ever mention the fact that I am HepC positive to anyone at work, and I don't think I ever will.  Have any of you on this forum ever had to break your secret health issue, well secret to me?  Also, since some people think that it's a drug addicts virus have you personally had to put up with any prejudice?  
God Bless    

[working dog]

i know the folks up here don't have a clue about hep c..but i didn't either untill my x got it back like 7 years ago...and still she kept it quiet..when i found out i had it i let people know...that was stupid...no one gets it....most think you got it shooting dope....it has  hurt my work..some people just don't want you in their houses....their so afraid of it...i was so sick and looked real bad for a while (like a year and a half) so i thought why or how do i hide it...i've got a big house to build up here and i'll see if that leads on to more..if not i'm going to move south for most of the year and won't tell many people about it.....and the shooting dope thing is a drag...who cares how you got it...they do.....billy

[GoodByeHepC]

Considering how many people have Hep C in the US Vs how many people have AIDS in the US I've always been curious as to why HEP C does not get more attention.

http://www.metrokc.gov/health/prevcont/hepcfactsheet.htm
"...It is estimated that about 1.8% of the population (about 4 million people in the U.S) have evidence of current or past infection with hepatitis C virus. It is the leading cause for liver transplants and causes about 8,000 – 10,000 deaths each year in the U.S..."

http://www.avert.org/statsum.htm
"...At the end of 2006, the CDC estimates that 448,871 people were living with AIDS in the USA..."

And I agree that there is a stigma attached to HEP C.
I'm pretty sure that I contracted it in my teens when a bunch of us gave ourselves DIY tattoos with indian ink and a needle wrapped with thread. But as far as the public perception is concerned I must have been a junkie.
I think at some point there will be efforts made by someone in the celebrity community to raise awareness.
Perhaps then it will become a "politically correct" social cause and the stigma will be lifted.
Sort of what Magic Johnson did for AIDS.

Let's hope for th best.

[sfwandwow]

iam the same way my job doesnt know my condition all they know is iam on some sort of chemo for my liver, its confidentail to me.. but all my family knows and is supportive of it.. they are okay and i had to educate them and get brochures for them.. My uncle back at home has had it since he was about 24 and he is 86 now and has relapsed and relapsed and healthier then a lark.. walks track and jogs track.. he is awesome inspiration to me.. so we can live fully.. just change living habits and do what the dr orders.

[reddawg]

I haven't been able to work for sometime now. But my last job was at a City, as a buyer. We were kind of "urged" to be blood donor's during blood drives.
I could only say that "I don't like the needles" for so long. I finally told my boss that Due to exposure in Vietnam, my liver is not healthy and my blood would not be accepted. That was the last I was urged to donate.
But NO one needs to know your business at your work place. It could come back to bite you!

[doll face]

unlike most people I told everyone. I had two jobs at the time I found out, The first a bar manager at a golf course, was kind of put off and suggested that I leave until "cured:" but the second job in the medical field, cleaning and calibrating pipettes (a medical research tool) had no problem with it. Since I scheduled all of our appointments to go thier labs, I just worked around the days I felt bad. When I reached SRV status I moved to Tenn. I was working as a manager at a busy hotel when I find out I had relapsed and had to do tx again. They had a lot of questions about it (except how I contracted HCV) and worked with me throughout tx.

I found alot of people who were ignorant to what HCV is, so how better to learn than from someone who has the disease, and boy oh boy did I teach alot of people about it. lol
I never really felt like an outcast because I wouldn't let anyone treat me like one. Even though I got it from a blood transfusion I felt that noone needed to know how I got it they just needed to feel safe and needed to be more informed.

This approach maynot be the right one for everyone but it worked for me. I have met quite a few people that either have it or know someone who does and has a ton of questions that they start asking as soon as they find out I had it and treated and beat it

Good luck to you..do what you think is best for you
Kim

[justme53]

I was one too, that chose to tell others about my dx. Most of those were wise choices for me and helped me to build a stronger network of support. A few were poor choices, more of a new-jerk reaction on my part to inform people I thought might need to know...they didn't in hindsight.

One gal stands out though, kinda the good and bad all rolled into one. I shared at a church small group setting asking for prayers and this one lady that was always a huggy sort, came up to me, then abruptly stopped and patted me on the back. It floored me.

But at least she had the courage and was forthright enough to call me later and say what I shared scared her and could I tell her more about it. I really admired her for that.

I sometimes wonder how I might react in that situation, NOT knowing what I do now.

[mayday557]

Before I knew I had hcv, I just treated people who have hiv or anything else
just like normal.  I still do.  I 'spose it's just the way I think and my belief systems.

To me folks is folks whether they have any type of chronic condition or not.
Not that I would be flip about anyones health situation, but if youre cool and
we're compatable then let's be budds.

Regarding an employment situation - I guess I'm one of the ' lucky ' ones.
The few people that do know are supportive.  It was my choice to share my
situation with my boss and HR department.  I went on the family leave act thingy
to protect myself as well.  

[TeeVee36]

I work for the Federal Gov'nt.  My Director, Supervisor, and quite a few co-workers know what I have and that I am on a year long tx.  They are very supportive and open-minded.  They have never questioned how or when I got it.  I haven't kept it a secret over the years to some here or there that I am a recovered alcoholic etc.  I now try not to tell people my history anymore.  The only reason being is I am too open and honest and I always regret telling people such personal details about my past and feel like sh@t after full disclosure.  This is a therapy issue for me...

For the most part the best place to let loose and vent is right here on this forum.  No one at work really knows what I am going through.  They have seen me from time to time get emotional and cry.  I told my Dirctor that I felt like I was going to die and she laughed and said "we all are" and made me laugh and walked away.  I find at the moments that I feel the worst I just stay to myself and it passes.

I don't have any regrets about my life, I am a firm believer that life is what you make it.  

I have come a long way and am very proud of myself; Hep C and all.  I have conquered alcoholism, drug addiction, cigarettes, lost 25 lbs, got my GED, just finished my associates degree!  I am a single mother and my daughter is graduating from high school in June!  I was on welfare in the beginning and have been homeless...GOD IS GOOD!  I am a miracle and I will receive the SVR miracle soon :-)

[pigeonca]

I told everybody.  Because I really don't know how I got hcv (I used to be quite the stoner, but never used needles and only tried snorting stuff a couple of times), I figure I probably got it at work, where I shared sharp tools that cut everyone.  Or maybe it was from a manicure, or that unsanitary dentist I only saw once (once was enough), or the time in high school 50 years ago when my best friend and I signed a pact in blood to go on a diet.  

What I'm trying to say is that if I got it, anybody can get it.  I encourage everyone to ask their doctors to add an hcv antibody test to their usual blood work.  It should be routine, but it isn't, and therefore lots of folks don't know they even have it until their livers are in sorry shape.

[moahunter]

We have another thread that has an interesting article at the top, about Hep C, and also how all sick people seem to have a stigma attached to them.

http://www.medhelp.org/posts/show/298399

I think there will always be a stigma with Hep C. People may or may not see it, but it is there. I remember waiting in an emergency room with a nurse, chatting about my child, and described my condition. Her comment, which probably represents what a lot of people think, is that it is a disease of "drug users" and that it is linked to their "dirty lifestyles".

We have to be a bit careful who we tell for this reason I think. I sure hope a better treatment comes along soon, but until then, perceptions about the disease are one of the many reasons to try and get rid of it from our systems I think.

[Severance]

There was an add on T.V here about 6 months back. It had a Hep A, B, C awareness focus. They coloured each virus to show transmission occuring.
For the Hep C section they flashed a bloody syringe in and out over a young female junkie taking a loaded shot. Nice! Not!
Here's me babbling to folk that they are safer with me than one of the many who are infected and don't know it, that their kids are safe playing with mine & that it's not just a drug addicts disease. But T.V is as God for the masses.
Since the add played nationwide I havn't been nearly as open.
Inevitably there comes a point with each childs new teacher that I'm required to give explanation as to why I'm not often able to participate in outside school events.
Some of them become standoffish, most are at least outwardly understanding and some are genuine. My last trip for bloods I was disscussing stigma with the Vamp'.
I'm still shocked at his response...."I wouldn't worry about it, 3 of us work taking blood here and I see at least two Hep C tests a day."
This is not a big town, even making allowances for retests that's a lot of virus walking around (possibly unattended). If they made HCV testing part of routine bloods this in itself would promote awareness.
And we could have done without the stoopid advert. Someone must have complained it only ran for a month.

[mar148]

I personally avoid telling anyone about my hep c and except for my immediate family, do not discuss it.  The ignorance is overwhelming, even with medical professionals if they are not liver or related specialists.  

I think it is sad that it is a disease, while impacting millions and millions, that has been contracted for many reasons, it is in the shadows.

It has been hard enough worrying about treatment and waiting to see if it worked than explaining and educating others about it.  I want to fight one battle at a time.  Mary Ellen

[Mary4now]

I am selective about who I tell about my Hep C.  i think I may have been fired over it, and I am going to file a complaint to have it looked into... But..... I think there is a stigma attached and that may be my own projections.  I think it is a misunderstood disease and there will always be the caring people who will offer support.  I just dont have a very good impression of most people so I dont trust that I'll be supported by co workers.  Hopefully I'll be surprised, and if I did not have to depend on working i would be more forthcoming.  

[sldb]

I dont see much stigma attached to hep c in the medical setting where i live and work. Most of the hospitals are doing drug studies  and quite a few liver transpants going on in my community. Believe me when i tell you there are alot of us medical professionals with hepc, contracted in the work place.  I dont see nurses or docs treating pts differently b/c of their diagnosis.   What i do see are alot of pts. who take their diagnosis lightly and sit on it for too long.  I always try to stress the importance of treating because i have seen so may people die from complications of hep c when it wasnt necessary. Its not a pretty death and it is avoidable for most..  Hope i didnt offend anyone,just something i had to say... Leah

[Mr Liver]

There is reality, and then there is perceived reality. Some claim they are the same thing.

Nonetheless, there exists public surveys that show there is far less stigma and discrimination attached to HCV than those infected with it thinkj. The public is fairly clueless about these matters and can't even tell you about hca or hcb , let alone hcv. All of their kids get shots of a and b who attend school and still most parents don't have a clue about those either.

The vast majority of HCV infections are from IVDU and thus it has a stigma based in truth. But not  as many people in the public as you might think share this stigma.  Here is a link and an excerpt from one of the surveys I've seen.

"Need to Shatter Myths:

    * The stigma attached to hepatitis C is far less than those infected think – Although 74 percent of hepatitis C sufferers believe that most people think that the disease mostly afflicts drug addicts and people with unhealthy lifestyles, only 30 percent of the public actually holds this belief. Only 12 percent of the general public believes that people like themselves don’t get diseases like hepatitis C" ---  end

[Mr Liver]

I forget to include the link in the post above.http://www.gastro.org/wmspage.cfm?parm1=420

[Mary4now]

You know maybe the stigma is the way I think I contracted it, buy snorting.  So maybe the stigma is my own... Although.... if I convince myself that I contracted it while I was cleaning for the dentist and stuck myself.  I still see some stigma, I think any disease that is contagious may have a stigma attached....   I didn't feel any stigma when I had cancer....

[Trish77]

Fret, have been meaning to answer you and sorry it's taken me awhile....

For me, the difference is in who I tell and how I get to tell them.  It seems each person I tell has required a bit of education.  If I wasn't able to give them the one-on-one personal touch and simply told them I had Hep C, they would have been left to their own assumptions.  Each person I told needed to have misconceptions altered.  

I told my friends closest to me who have known me for years as the person I am.  They still wondered "how on earth did you get this?" and I told them about the blood transfusion in '84.  SOME of them got told about the earlier drug use.  Not all.  All of my friends have been supportive to varying degrees.  They seem to have a hard time knowing where to slot me socially sometimes because I quit drinking.  That's been very weird .. I'm fine with going to the bar and having a soda water and lime .. but they seem to be uncomfortable about that.  I still mostly keep it to myself how I'm doing with all of it and I'm going through treatment mostly under my own steam.  If they ask how I'm doing, I tell them. And I find the ones who said they'd be there for me haven't been asking.  

Dating was an adventure and one of the reasons I opted for earlier treatment.  It was so not fun telling the guys I was dating at that strategic point that I had Hep C that I just quit dating for awhile.  To a person, they each thought it was a sexually transmitted disease and I spent some one-on-one time educating them too.  Some could get past their preconceived notions, others couldn't.  The one guy even went and researched it and found such conflicting information on the internet that he just couldn't get past it and found it too risky. We remain good friends. The one guy smirked and said "Isn't that what Pamela Anderson has?" and I responded "That's also what Anita Roddick, who started the Body Shop chain had .. she got a blood transfusion when her daughter was born and just passed away from it" That put a different face on it for him suddenly and then we were able to talk about it.  

One of the guys in my workplace, new guy who didn't know I had this, started talking about HIV and mentioned Hep C and said " if you get that, you're done for, there's no cure.  That's what all the people in Hollywood have from sleeping with people who do drugs."  So .. I had a few things to say to him too.

I've told my immediate co-workers, the ones who work closest to me.  Again, it was one-on-one education and they were okay with it once they understood. Again, I mentioned the blood transfusion, not the earlier drug use.  I'm just not prepared to share that part of my life with people I don't know well and when that is so far behind me.  We work for a large company within another large company delivering their technical support.  I would not want it to get out within the company we work at that I have HCV.  I interact with clients very closely and I would NOT have the opportunity for that one-on-one education and I would NOT be able to counterract their misconceptions and from what I have encountered so far, there is alot of stigma and ignorance about Hep C.  I firmly believe they would be uncomfortable suddenly interacting with me so closely.

So .. I'm careful who I tell and I have a little speech prepared for the guys I dated that explains method of transmission in easy to understand principles...although jmjm530 told me it would send him running if I told him that.. lol  .. and I tell them that if they were to bite my neck and drink my blood, they would be safe excepting open sores in their mouth .. but if we were to cut our fingers and decide to be blood brothers by mingling our blood into bloodstreams that would be a risk.  It helps them understand that it's a blood to bloodstream transmission.  

I think there are pockets of people who understand this .. but there are larger pockets who don't.  Despite Mr. Liver's stats .. I'm finding otherwise so it seems I keep running into the other ones and I think it depends on what setting you're in and who you're telling.  To a person, even my friends, they ask me with some shock, "how did YOU get this?"  

And so it goes.  Hope that helps.

Trish

[Trish77]

I wanted to explain better about this statement "I still mostly keep it to myself how I'm doing with all of it and I'm going through treatment mostly under my own steam.  If they ask how I'm doing, I tell them. And I find the ones who said they'd be there for me haven't been asking.   "

No issue with going through this under my own steam, I knew that's how it would have to be, how I wanted it to be. I could have asked my daughter to move home and she would have done it and I didn't want her to.  My co-workers and my boss have been terrific in allowing me time off for my appts and backing me up on the schedule. I definitely have support from my friends and I appreciate the ones who ask how I'm doing.  If they ask, I tell them.  I know who I could ask if I needed help and I'm hoping I don't have to ask.  There are just always those who were not able to come through on the intentions they spoke of.  Life happens to them too.

[SJL]

Please read my post on page 2,FINALLY MAKING TIME TO WRITE THAT "TRUTHFUL" BOOK. I am ready for some serious advocacy and I am asking everyone to contribute what they personally want to see addressed in the book. I am working with Newspapers, Magazines and talking to whomever I can, to get this disease out and open to the general public.Please, I am asking everyone to respond, whether good or bad.Also, if everyone would respond and pass this web-site on~http://hepcnetwork.org/legislation.htm
Also SusieQ2008 has posted a form. If you can sign the form she posted, or write your own story, and pass this form on to at least ten people you know and ask that they pass it on to 10,etc.etc., this would certainly help to make more awareness to the legislators. All suggestions or opinions are needed.
My Thanks To All,
SJL

[fretboard]

Well thanks for all the honesty on this subject, I remember back in 2003 when I had my doctor at the time write the note I needed to get myself back to work.  He didn't have a problem keeping it as secret as I needed.  I think he just wrote something to the affect that I was a patient and that I was being treated for liver disease.  My abscenses were a bit splotchy so I absolutely needed something like that.  Anyways, I had a meeting with two ladies, one who was very nice and the other one was just plain clueless about alot of things.  I handed them the note, and I said this is top secret for me and I don't want anyone to know about it, I have HepC.  Well one lady, was totally blown away, I saw a grief stricken look appear on her face, it was amazing.  The other lady didn't know what to do and just continued looking confused.  The one lady who obviously at least read something about it, said well fretboard I'm very sorry to hear that bad news, let me know if you ever want to talk about it.  The other lady just kinda nodded her head, as the unfortunate follower of a person that she was.  Also, something else good came out of it as well, the kind lady who was very sweet to me always said "well I can give you this paper work and we can stop documenting you".  I said oh I was being documented?  It was just a small surprise for me as I really messed around on that job coming in under the influence, nodding off at my desk etc.  Anyways, I worked there for another 3 years after that incident and now I work for a different department.  It's supposed to be against the law for them supervisors to share anyone's health information, but we are talking civil service which is the Mother of all gossip employment situations.  So do I think anyone else was told?  Yes I think there were a couple of ladies that were told, but after I shared my condition with at least one of my favorite ladies in that save my butt meeting.  I no longer cared if anyone knew, I still didn't tell anyone, but if a couple older busy body's found out about my condition oh well, it was then out of my control, and guided by the man upstairs.  God Bless    

[Mr Liver]

"Despite Mr Liver's stats"

I'm sure you meant to say the stats in Mr Liver's post as they are not my stats.

The sample size was over 2100 people, including infected,non-infected, and physicians. With over half of the participants in the survey either doctors or infected individuals, you would expect a fairly knowledgeable group when it came to HCV. If anything the 'stats" are conservative, with even less of the non-infected individuals knowing anything about HCV than what is represented by the above numbers. I

This is an excerpt from the survey done by the American Gastroenterological Association:

"With probability samples of this size, one could say with 95 percent certainty that the results have a statistical precision of plus or minus 3 percentage points (for the non-infected general public sample), plus or minus 4 percentage points (for the HCV-infected sample), and plus or minus 7 percentage points (for each physician sample) of what they would be if the entire population had been polled with complete accuracy. This online sample was not a probability sample."

Survey results are available on the AGA Web site, www.gastro.org.

[Trish77]

I'm sure you meant to say the stats in Mr Liver's post as they are not my stats.

Yes, that would be an accurate interpretation of what I meant by my words.  That my own experience has been different than the stats you have.  

Now that I'm reading that a goodly half of the stats were from either the medical community or infected individuals, I can see why they turned out that way and reflect sldb's experience who also works in a medical community.  The one fellow I disclosed to also had a health background and knew quite a bit and it was less of an issue.

I would be interested in stats from simply a random sampling of those who are not infected and get a response from them.

However, yes... I meant it the way you restated my intent.

Thanks.

Trish

[Trish77]

When I read your post, what I read, respectfully, is that you were counterracting the imposition of a greater stigma by replacing it with that of a lesser one.  For you as a gay male, the assumption you were concerned everyone would jump to is that you have HIV.  As a straight female, the assumption that has been jumped to is that I was doing something or someone unsavoury, to be blunt.  So yep, I am happy to be able to pull up that blood transfusion as a risk factor, even though it should not matter where I got this.  I'm trying to avoid being stigmatized by assumptions, same as you.  

Didn't stop the issues with dating someone .. people you work with don't sleep with you.  Well, not generally anyway. ;->  Doesn't matter how positive a face I put on that.  Those certain guys couldn't get past their own misconceptions.  On the whole.. I would say that was probably my worst experiences with this, that whole dating thing.  I know how it made me feel.

You still had to spend a couple of months educating everyone.  I'm glad that you had the opportunity to do that.  Not all of us are able to.   I would not be able to do that in my work situation when there are 1000's of people I interact with in the company I work at but am not employed by.  One day I bled on the one woman's keyboard, nicked my skin on a piece of metal on the computer hardware.  She didn't see it but I did and I was horrified. Suppose they all knew I had HCV at the desks around that woman and saw that?  It made me think, at the implications of it, at what if they knew I was HCV, various things.  Maybe that's me overthinking it .. but I can't NOT think about that.  If I start looking haggard and losing my hair, I'm prepared to say that I'm on chemo-like meds.  I'm still not disclosing.  

No, it shouldn't matter where we got this from.  And yet, to a person, everyone I disclosed to asked me how I got this, particularly my friends because, well, friends ask things like that.  It is up to me what I tell them and I could say "that's private" or "none of your business" and to me that would be worse to leave it up to their own imaginations as you figured yourself. So like you, I have something with a lesser stigma attached to it, blood transfusion, to be able to answer that question than the one with the greater stigma.

Sometimes I think about what it will cost me if I step forward.  I am getting involved in fledgling way in activities in my community that are Hep C related.  It may require me to put my face public with all this.  And I think about what that means to my job and my community involvements.  I do believe in the greater good.  I just know there is a cost that I don't take lightly.  And I am thinking on that so that it's eyes wide open as I go forward.  (Kudos to you, DebNevada, for what you are doing with the clinic scare in Las Vegas.)

Fretboard asked what our own realities were.  That has been mine. I'm glad that yours and some others has been better.

Regards,

Trish

[meki]

I screamed it at the top of my lungs - and I still do.

I think that if you put a face to it --- if you give HCV a name --- YOURS --- then you are giving people a reason...

A reason:

*To get tested
*To be safer
*To support others
*To Give donations to Approved Charities
*To understand their friends, co-workers, family members during the TX time - and be supportive when TX doesn't work --- or when it causes massive side effects
*To Inform the public about HCV

I feel it is important to teach the world that HCV can happen to anyone.

If it can happen to ME --- It can ---- and it might --- happen to YOU.

I had no obvious ways of contracting HCV...

I didn't have any unprotected sex (*NOTE* I do not believe HCV is sexually transmitted - just as a side note... it can be transmitted during sex if an infected person bleeds into an open wound of an uninfected person... )

I didn't do drugs... (for goodness sakes I work at a Police Department... LMAO!)

I didn't have any transfusions...

I did - however - have a shot of Rhogam... So it's possible it could have been from that... But there is NO WAY for me to prove it.

So - if it can happen to me ---- it can happen to ANYONE.

And the world needs to know it.

The way to eradicate this disease is INFORMATION ---- EDUCATION --- UNDERSTANDING and an aggressive fight.

I think that it's a very personal choice to decide to tell. But I support those who tell others.

And yes... there are times when you get that "OH MY GOD!!! YOU ARE DISEASED --- DON'T BREATHE ON ME --- Oh my god - I have to go wash my hands and body in bleach now that we've even been in the same building ---- and don't talk to me - oh you're horrible - you evil filthy person!" attitude.

But --- I look at those people like I look at people who wear aluminum hats on their heads hoping to scramble the Martians transmissions...

As poorly misguided souls...

LOL!

I think that by telling you do more good for yourself --- and for the HCV community as a whole.

Just because you SVR --- don't think you are done with HCV... you're not.

I wish you luck and good wisdom on choosing what is best for you - and your life.

Meki

[Trish77]

Hi Meki .. I think it's easier for people like you to step forward who can say they got it from a source such as yours.  I really do not want to disclose my past drug use.  It's WAY far behind me and it's associated with a life that I don't want to think about anymore.  I'm not saying I should not step forward.  I'm saying there is a cost to me that I am thinking very hard about.  And I need to be ready to pay that cost.  I have spent my whole life putting those days and that other lifetime behind me.  And I have done so successfully, rebuilt my life and put it way past me.  What my HCV diagnosis did was bring it right back to my present and smack me up in the face with it again.  

I could have gotten this through the blood transfusion and perhaps some other method that I'm completely unaware of.  But if I were put on the spot and required to answer honestly if I had had any past IV drug use, I would be forced to disclose.  

That costs me quite a bit frankly.  A life that I have put on a history book on a shelf will potentially be re-opened for me when I least expect it and when I have no control over it.   As it is right now ... when I DO talk about my past, I've put it far enough behind me that it's like opening Pandora's Box and it all spills out again .. and then I have to gather it back up again and shove it back into that box and get back to my present again.

And I'm not talking about the drug use only.  I'm talking about the life situation I found myself in as a kid that resulted in drug use.  I don't want to have to be reminded of that, thanks.  So .. there IS a cost, Meki.   And I'm thinking very hard about that.  I have never run from a fight in my life when there was some good to come out of it.  I do believe you have to pick your battles and I imagine this is one I WILL pick because I feel compelled to and I have already begun.  I just know it's going to cost me and I'm finding my way through it.

I have raised my children to be adults I'm proud of.  They are all post-secondary educated and I gave them a better start then I had.  If I go public, then their mother's past will become part of their present, potentially.  It might not be but I cannot recklessly discount that.  I think about this too, for their sake.  Then the impact is not only on me.  It is also on them.

I also think that's why the rockstars, etc. don't step forward.  While everybody knows they did the sex, drugs and rock and roll thing .. that they got HCV as a result is not something they want to wear on their lapel pins.  They want to quietly treat and get it done.

I have no intention of being done with HCV when I achieve SVR. And I say when, because I can't conceive of stopping until I GET to SVR so that's all I'm thinking of. I am involved in fledgling advocacy initiatives and I will remain so.   I'm just being very careful as to how I do this.  It's going to cost me no matter what.  I'm just trying to do this in a way that makes sense all around.

Trish

[meki]

Are you telling me you KNOW for a FACT that you got it from drug use?

You don't have to tell ANYONE how you got it.

Saying "I don't know" --- it's a good way of saying --- None of your business ---- or that you don't know honestly.

If someone asks you about your past... Hmmm... I am very sensitive to hard pasts... I understand them - I deal with people all of the time who have had bad pasts... I also didn't have the "perfect" childhood. So I understand old wounds being opened.

But I think skeletons in the closet --- those are much harder to deal with --- if they are forgotten - shut off... Because they have a way of haunting you and hurting you. And CRUSHING you --- if you let them.

I believe in honesty --- or at least as much as possible in all things. Now don't get me wrong... I've told a few lies in my life... (don't start counting please --- LOL!) But --- I've found that people generally are MORE understanding --- and MORE forgiving... than we are of our own selves.

I think --- and I mean this is just me reading between the lines in your writing --- that you had a horrific time in your life... And I think that instead of dealing with the grief --- the loss of a real childhood --- instead of hitting head on the problems that come with that type of past... That you buried it...

Two things I have to tell you... And I don't know if they apply to you --- and I certainly hope you don't take offense...

Because I really believe telling others is a PERSONAL choice... My choice is to scream it from the rooftops.

But the two things I have to tell you:

#1. The past is the past... You can't remake it - you can't change it... You can't do anything to it - except remember it.

#2. Forgive yourself. Know that sometimes we all do things that we do in order to cope... To live... Know that you've changed your life and you've changed your heart, your mind and your soul... That you've made something out of what could have been nothing.

HCV is not your burden for your sins.

HCV is a disease. Plain and simple.

How you got it doesn't matter - and truthfully is no one's business... If you choose to tell them --- that's up to you. HOW you choose to tell them is also up to you...

What matters is how you deal with it --- and how you go forth through your life from this point on.

But from reading what you wrote --- I wish you the most sincerest form of hope - and belief that you ARE strong enough to handle what is going to come --- and what you can do with your life from this point on.

I hope --- beyond all hope --- that you forgive yourself (whether spiritually, religiously or just humanely) for what you percieve to be something to be as "wrong".

Just as a side note ---- have your children been tested?

Because if you are sitting there with the weight of your past on your shoulders and the possible guilt of having infected them --- then you are carrying TOO much weight on your shoulders.

I send you extra warm hugs and thoughts.

Meki

[Trish77]

No. I'm not saying nor have I ever said that I know I got this from drug use.  I call it a risk factor.  Nothing more, nothing less.  What I am saying is that the risk factor exists.  I am well aware that IV drug use comes up when HCV is brought up and I do not expect to get away with NEVER mentioning this aspect as I continue my little efforts to make change.  It has already come up.  I spoke about it in a workshop when I was making the point that HCV does not only come from IV drug use.  I felt I had to disclose my risk factors so that they would understand that I was not saying I don't want to be associated with those IV drug users.  I was saying they were too heavily associating Hep C with IV drug use to the exclusion of other factors and if they really wanted to educate and reach people, they needed to approach it a whole lot differently than what they were doing.  One of the women came over later and thanked me for my courage. I looked at it as required honesty if I'm truly serious about getting results.  I expect as I continue my efforts, I will have other situations where it will give more weight to my efforts if I am truthful.  There is a cost to that and I'm making sure I'm ready for that.

As for my past, I'll try not to be angry at your analysis for I know you mean well. No, I didn't have a horrific past.  Just a painful not pretty one at the time like alot of other people.  The fact that alot of other people had a difficult time didn't make mine any less for me while going through it, that's all.

No. I didn't bury my past.  I have the trait that I face things head-on and frankly, my personality is to analyze things to death to learn as much as I can from it and then decide on my battleplan, my strategy.  I don't run from anything, thanks. There simply comes a time when you need to leave it behind you.  That you have dealt with it enough and accomplished enough success that it is in your distant past and that it has very little to do with your present any more. And that is where I'm at and that is where I like it.  If I am going to bring my past into my present, there better be a damn good reason for it.  And, despite the fact that I have left it behind me, it is still painful memories and I imagine it will always remains so.  And, there are some people who are still alive that would be impacted and I have always been cognizant of what my actions cost to other people.  It's the responsible thing to do.  

I firmly believe that there are those things in life that you heal from .. and other things in life you learn to manage.  Thinking about some parts of my past is like ripping the scab off the wound and letting it re-heal again.  I don't give a sh*t if someone thinks that means I haven't dealt with it.  I know better.

I don't think HCV is a punishment for my "sins".  It's just something that happened to me and I have to deal with it.  Just like I deal with everything else I've ever had thrust upon me or that I did to myself because of my own choices.  I'm a big believer in taking responsiblity for your own actions and I do that in spades, thanks.  I raised my kids to do the same thing and I never ever let them get away with excuses on that.  

Yes, my children have been tested.  It was one of the first things I had done.  They're clear.  Thanks.  I also notified the ex-boyfriend I'd had the six year relationship with. The public health nurse told me I didn't have to notify past partners.  I felt otherwise.

I don't have any concerns about me not being strong enough to deal with ANYTHING, frankly, as arrogant as that might sound.  The only exception may be harm to my children. My friends consider me to be a pretty tough cookie and one of the strongest people they know.  And I'm talking about inner strength because on the outside, I'm generally pretty easygoing, believe it or not.  Only being cognizant of the  cost so that when I go into battle, I go in fully armed.  Having ANY misgivings or doubt would mean I don't go at this full force.  My nature is to consider the cost, make a decision and get the sword out and go at it.    Not to go off half-cocked and then back off from a fight.  Not my style.  Just like I did with treatment.  I read up on things, covered all the angles, thought about it from various directions and then made my decision to proceed with treatment and went after it.  If I can be accused of anything, it's analyzing things far too much.  That's my nature and my way.  It works for me most of the time.  I deal with the times it doesn't.

Very little in your post resembles me but thanks for the thought. I DO know you meant  well.  

Trish

[meki]

"No. I didn't bury my past.  I have the trait that I face things head-on and frankly, my personality is to analyze things to death to learn as much as I can from it and then decide on my battleplan, my strategy."
ROFLMAO!!!!

I love it -- that's exactly what I do.

But I'm a little slap-dash-happy at times.... ADHD to the extreme.

I see that I read, incorrectly at points - in your post... I mistook the costs as being something you literally weren't willing to put out --- but I see, instead of being afraid of putting them out --- you're weighing how much it's going to cost you... Not that you're afraid of it.

And the costs to others.

Yes.

There are costs.

Like I said --- I've literally had to deal with my entire work place putting bleach wipes and antibacterial sprays in bathrooms, at the keyboards, leaving things out that obviously were for "decontamination" purposes... Hiding the silverware and moving to spoons --- and labeling coffee cups Etc. ad infinitum... People refusing to shake my hands... especially when I looked my worst at the end or middle of treatment... up until just very recently... I've had people avoid my phone calls --- be unable to look me in the eye...

But usually I handle them differently... I teach them --- talk to them... I also laugh at myself a lot.

Everyone around here has loosened up - most of them ask questions now... It's common knowledge around our small (and I do mean SMALL) island... that I am an advocate locally. The doctors have me on their "ON-CALL" OMG list for patients newly diagnosed and debating on TX.

My friends and family never once deserted me. And most people --- if not all -- at this point have learned something about HCV... Most people that talk to me about it... well - they are learning every day.

And did it cost. Yeah... Sometimes it cost my pride a little.

But --- Like you - I chose. I decided... I made my decision that hiding it wouldn't be the best thing for me... And for others.

Hiding it is easier --- and certainly causes you less stress. YES!

But I vehemently think that if everyone stays quiet about it --- then NOTHING will ever be done.


Sorry if I inferred incorrectly about your post.

I did mean well... LOL!

and the roads.... (well anyways...)

But I'm glad you didn't take offense.

Meki

[Andiamo1]

I went 26 years with the disease and didn't know I had it.   Before I got married, I dated a few women and then spent 42 years with my wife.  To the best of my knowledge no one ever caught the disease from me.

I have been very open about having it, but never told anyone, until recently, how I caught it.  It rarely caused me any problems, but there have been a couple of painful incidents.

One of my close friends was dying and his family refused to let me visit him.  Somehow, they thought he would catch HCV from me.  He was dying of cancer, so there was no logic in their decision and the craziness of their decision frightened me.  After that, I still stayed open about it even though I now had evidence that it could cause problems.

Eric

[Trish77]

I'm not willing to cost myself my job at the moment. I don't see the benefit to "the cause" in me losing my job and it would *directly* harm my children, even though they are adults.  I'm the only parent they have.  My youngest is still in university and the others are recently graduated and still getting their feet settled.  Mom is still the bedrock despite them being very independent.  

There are many ways of doing this, strategically, and not everybody has to lay it on the line in exactly the same way.  

I have given my name as being willing to speak to kids in middle schools.  I think I make a good candidate to be able to speak to kids that age about making good choices for their own lives in the midst of difficult circumstances, the impact of making poor choices and that eventually your life IS your own and you CAN turn things around, so get yourself off to the best start you can by the choices you make NOW.

I'm involved in my Hep C support group and, as part of that, taking part in activities locally that the government has initiated to improve service delivery to persons with Hep C.  

There is a group that's trying to get started as a non-profit association locally to provide services to persons with Hep C.  That might be the first one in the province.  I hope to volunteer with them.

I have my own little advocacy project that I need to get cracking on and, well, whatever comes my way.  I'm a newbie at this.  

But nope, sorry ... not going to let it get out at my workplace en masse.  I need to work for the time being, get myself through treatment .. and then I can figure out what comes next.  I don't see that it serves "the cause" or me for me to lose my job.  If you think that's gutless, I can live with that.

I appreciate your zeal, however the cost to each person is different.  Your approach is pretty much like conscription into the military with no regard for who's being called into  service and the cost to the inductee.  So I prefer the volunteer option without the guilt trip being laid on people who don't want to shout it from the rooftops as you advocate we all do.  Take sexual abuse for example.  While it is not the victim's fault in sexual abuse, not everybody who has been sexually abused is able to speak out about it. That has it's own stigma and pain associated in the retelling of events.  Great for those that can publicly talk about it.  Not everybody can.  That doesn't mean they are failures.  To survive is to be a success.  The cost to each is different and I would NOT want to lay a guilt trip on those who feel that this is not something they can speak out about.  I feel the same with HCV and pretty much any other area.  Even one-on-one advocacy is advocacy.  The Power of One.  It's all good. Shine where you're planted, that sort of thing.  So you do your thing, Meki.  It doesn't make others who choose to tackle it differently any less of a person or a letdown to the rest of us with HCV.  

  
Trish

[meki]

No nonononono --- Hey hey hey... wait.
I think it's a VERY PERSONAL Choice.

I would NEVER ------ NEVER EVER EVER (can I just type that infinitely so you can see my underlined stress mark on it? Pretty please... LOL!)

I would NEVER want ANYONE to feel that they HAD to choose my way.

I'm just very vocal...

I don't think anyone is "bad" or "horrible" or anything if they don't choose to tell.

I think each person has to weigh their own choices. Like you... Like others.

I would love it if we could all get together and shout it out...

But I understand completely those who cannot.

Just because I can --- does not mean someone else can... Or even wants to.

I wish that it could be so --- But I understand and completely support those who cannot.

I'm sorry - I'm making a muck of it... I didn't mean to put you on defensive in any way. I just like to share my opinion on things --- and I'm very prolific with the way I write... with a lot of feeling behind it.

But please don't ever think that I meant that EVERYONE has to subscribe to my way of thinking. Oh egads - that would be awful.

I wasn't trying to say that because I want to shout it out --- and would love everyone else to be able to do so --- that I didn't understand that there are some people who cannot.

NOR will I ever say that people have to do it "my" way.

Egads - I've truly made a muck of trying to talk with you...

Please --- allow me to re-introduce myself...

I'm Meki... I'm a persistant pain in the rump - nice to meetcha... I like to jump in with my opinions and thoughts --- NOT because I don't think other's thoughts are important... But because I like to share... I take other people's thoughts into consideration and try very hard to not hurt other people's feelings. I have ADHD - and oft mean exactly what I say --- without any underlying thoughts or censoring. But sometimes what I say can be read into - incorrectly. And other times I make blundering mistakes...

So it's very nice to meet you.

:D

[Trish77]

Hi Meki,

I could write ditto for myself after your last paragraph except that I don't have ADHD.   Maybe other things.. but not that. :)  Although you know.. sometimes I wonder.  I have to multitask all the time.  Rarely can watch a movie without also reading a newspaper or doing something else also...but anyway...lol :)

Thanks for clarifying .. that was how you came across to me.  It isn't that you made a muck of things .. it simply takes a back and forth of dialogue to clarify.  Partly my personality .. I see shades of grey if they exist and rarely are things black and white. More like a kaleidoscope even.  That depending which way you look into a kaleidoscope you will see different colours and views.  So sometimes someone says something, I peer into my kaleidoscope at what they've said and I can see it from a different perspective and it just goes back and forth until it settles out.

Because I thought you were advocating a one-size-fits-all approach, I just couldn't let that pass, thinking about all the people that one size wouldn't fit and I didn't want it left there.  That's me...sigh.

Thanks for your patience and for discussing that out with me.  I get you now.  

And pleased to meet you. :)

Trish

[meki]

Hey - let me borrow that Kaleidoscope.

One size fit all never fit me... :D

[oyasin]

IMHO, the "regular" public opinion does not matter in the least. Truth be told, very few carriers know for sure where they got it. If you were an IV user, or you got a transfusion, you can think you "most likely" contracted it then. Does that give someone comfort? Having knowledge of the exact source cannot be guartanteed, and does little to change the outcome, so what does it matter?

I had this friend who, when I told him of my hcv, said (looking down his nose) wow, where'd you get THAT? (translate= so you shoot drugs). I responded... I don't know Steve, maybe that time I stayed over at your house and used your girlfriend's toothbrush.
He got quiet....
My GF work's in the medical field, and did not even know that 100,000 people a year die due to medical mistakes. I personally know two.

I don't care who knows about my hcv. When I tell someone I generally spew some stats, followed by "how do you know you DON'T have it." Most folk's don't even know what a liver enzyme test is, or when they had their last physical. I leave them thinking.

Any stigma is in their head, and it's based in fear. You can't control that, only what's in your head. Don't worry what others think.

good luck, enjoy living - D.

[merryBe]

those that love ya, will continue to...those that don't could have any reaction from mortal fear to no big deal....

unless you are having problems bleeding at work there's no reason to alarm others.
Yes there's research suggesting virions can maybe live or be spread outside of the blood methods...but they said the same of HIV...and so far it's not proven the case.
there are people married for 30 plus years, where one is pos, the other neg.

my advice, tell them that need to lnow, thats anyone dealing with your blood..nurses, doc, lab techs, dentists and hygenists, so they can take proper precaution.
Otherwise you are better to keep things to yourself, especially in the workplace.
The fact that HCV is not spread easily does not mean people will not have fear based on their own ignorance, it also doesn't mean you might now be let go because it will lower a companies insurance rates (any employer is capable of bottom line thinking). It also doesn't mean one fearful employee, when everyone else is cool, might not cost your your job, as one lady in here has already learned.

hopefully you will well educate yourself, and your friends and loved ones, and over time the public will be educated out of inordinate fears...until then protect others yes, but protect yourself as well.

[moahunter]

The only thing I would add to your thought, is that I don't think it is very wise for someone who has newly acquired the disease, to go out and talk to everyone about it. It can be tempting to do this, but it probably makes sense to sit back, and live with it a bit, before making such a decision. Just talk to a few key people you trust, and preferably not someone at your workplace.

Personally, I wish that no-body knew I had this disease, because it is a pain in the a** to explain it to everyone all the time (I didn't have a choice as my situation was published in the newspaper, and on TV news - see my homepage if interested). And, even after you explain it, you have to explain it again and again, and have to tell people how you are doing, again and again. It almost becomes all you are. It's like any disease, unless you have it, or know someone who has it, most people don't really understand it, and they probably don't want to. There is enough in life to be afraid of already, why scare people more? People have all sorts of problems, I don't need to know about them all, and they don't need to know about this problem of mine (although I accept - there should be better education with this disease, especially in schools IMO just before kids consider drugs).

[Kalio1]

I agree with what you say. When I was on tx and trying to get through that there were a lot of people I just didn't have the energy to tell, it was just another mountain to climb.

Now that I am SVR ( or so I hope, I was clear on my 3 month post test, but haven't gotten in there for the 6 yet) it is a LOT easier to tell people, take the time to explain and try to teach them something about it hoping they will in turn have a better reaction to the next HCV victim they encounter.
It's also easier to say " I HAD HCV" than it is to say I HAVE HCV.
Keep fighting all of you on tx! I wish you strength! It is so "worth it"
I still feel my body is in recovery mode from 2+ years of Interferon but day by day I am getting stronger. Hang in there all you txers, be nice to yourselves and don't guilt out if you can't do what you normally can or you are irritable or feel borderline nuts sometimes! It's the MEDS! Give yourself a break, you deserve it.

[pjhep80]

http://www.ipetitions.com/petition/heprock/index.html