HCV contamination in news and stigma associated with it

I just wanted to post on this subject since it has been mulling around in my brain for over a week.

There have been many posts over the years concerning the stigma associated with Hep C. Many people have commented on lots of threads about whether to tell people you are treating, what to tell people, who to tell, etc. Some people decide to just be open about it and some don't. Neither position IMO is wrong but a personal decision we each make.

I personally decided to only tell a very select few. My family, a few close friends at work since my treatment would impact them and that is pretty much it. I spent a lot of time coming to my decision and for me it was the correct one. I have young children and was very active in the community and ran a local youth sports program. My decision is mostly based on the fact that people talk, are ignorant about things like Hep C. Being that I ran a local sports program and when it comes with dealing with their little johnny can get really ignorant.  I have younger kids I did not want them to have to deal with all that if they did not need to. The following just helps confirm for me my decision on who to share with and who not.

Recently their was 2 stories in the local papers. The first story had to deal with a local dialysis unit that has found 15 patients since 2005 that contracted HCV as a result of their dialysis treatment. They are investigating trying to find the direct cause.

The other article was about a VA hospital in Miami I believe that has now reported 5 patients who contracted HIV and 33 with hep C as a result of endoscopic procedures, and improper cleaning of the equipment (scary is this day and age).

What beings me to mention this (besides the fact that this is still happening in this day and age) is that my wife was at work. She heard someone mention all the news about the swine flu. The person who she was talking to said "yeah I heard about that but did you hear about the Hep C outbreak!" ....OUTBREAK, she was referring to the earlier article about 15 cases reported since 2005.

Later that same day I was talking to someone who commented on swine flu and said some ignorant comment about getting it from pigs (kissing them). I then attempted explained that is not how it is transmitted and that I saw an interview on TV where they traced it back to patient zero. to which they replied. You can trace the AIDS virus back to some African having sex with monkeys too. I decided right then and there that the conversation was over. You really can not reason with that kind of mentality and level of ignorance. Scary to think that so many like this walk among us (and procreate too).

Anyway Through my entire treatment I did as many have and still do. I forged ahead pushing through all my sides from the meds. I would do what I refer to as "Giving good face". No one ever knew I was sick, treating, or how horrible I would be feeling from this treatment. I finally decided after talking it over with my doctor to take the final 5 weeks off work. This decision came after a car accident that I attribute to my brain fog (that was a previous post).

Now when I return in another couple weeks I will have everyone wondering where have I been and all the rumors that I can only imagine have spread. I still at this point will just tell people that I am fine and was dealing with some personal issues, and just leave it at that.

I just wanted to share that as it bothered me for a few weeks.

[nygirl7]

swine flu and said some ignorant comment about getting it from pigs (kissing them).


You did the right thing Slayer - anybody this stupid just deserves to get what they have coming or live in a bubble........really you couldn't change their mind no matter what you did. In fact the more bigoted an individual the more ignorant they tend to be.

Just wait until one of their relatives get it and they try to convince them it wasn't from kissing pigs, having sex with monkeys or doing IVdrugs.  Good luck.

[portann]

The first day back at work will be the hardest, breaking the ice, the curiosity.

In my experience, most people will let it go, unless there's something in your words that are food for gossip.

I personally opt for cover-up, as recommended to me by my veteran hepatologist. I've never felt ashamed of HCV but I personally don't want to tackle other people's problems with my having it, as long as it poses no risk to them.

People tend to fear what they don't understand and when it comes to medical conditions, most people know very little unless they're directly affected. Even PCP's have many misconceptions about HCV that stigmatizes us straight out.

[Trinity4]

"Anyway Through my entire treatment I did as many have and still do. I forged ahead pushing through all my sides from the meds. I would do what I refer to as "Giving good face". No one ever knew I was sick, treating, or how horrible I would be feeling from this treatment."

You decribed that perfectly.  That is what I have done throughout tx too.  My reason for not telling isn't the stigma but the fact I just don't want to have to explain myself whether it's a good day or a bad day.  I've never felt it was my job to educate people about hepc because what they think or how they react is of little importance to me.  It's my personal journey which I choose to travel alone.

To date, my immediate family knows I am treating and that's it.

[justme53]

These incidents of contamination are gross negligence on the part of the clinics/hospitals doing the procedures. But what is never made clear....at least to me....is in the scanning process of these patients, if the positive HIV/HCV dx's were from prior infection that were only discovered after the fact or if they can pinpoint that they were directly related to the botched procedure. So how true to the case are the numbers in reality.

[oneatenuff]

The stigma of communicable diseases will never go away - someone is always going to be bad-mouthing every CD there is - from TB to HIV to HCV to STDs  - it's the nature of people - no matter how kind certain people seem to be or how good-hearted they seem to be or how concerned they seem to be about the welfare of others and treating others "fairly"  - to talk and gossip about others (and especially if they find out someone is infected with HIV or hepatitis.)   Once it's "out" (once you tell someone)  you can't take it back.    I would strongly urge anyone to be very careful about who they tell.   It's no one's business, and even though some people  (especially in the beginning of their diagnosis or beginning of treatment)  have thoughts that "telling others" will be a good thing,  and even though some have had no problems at all when they have told, it's important for the person living with a CD to tell the "truth" without telling the entire truth.   Family?  Sure - if you know they'll be supportive even so.  People can lose a lot of support telling the entire truth - from employers to friends to lovers, etc, and losing support and feeling the stigma coming on like a barrel of rotten apples can further compromise their road to recovery.  Unfortunately, that's an aspect of CD's that's never going to change.   I have read notes on this forum where patients have said their doctors have advised them that it would probably be a good idea to tell their past sexual partners they've got hep C, and that's the worst advise I can think of giving a patient.  It's almost malpractice.   Probably is.  

[Marc1955]

Great post! I agree with everything that's been said. I think the bottom line is "Your health issues are really nobody's business, but a few very close family members." Sometimes I think people want to tell friends and colleagues to make their own lives a little easier. It would sure be easier if people understood the reasons for my fatigue or loss of previous enthusiasm for things. But people generally are not informed about illness. That's nothing specific to HCV. Unless they have a personal experience, they just can't understand. And so, it is definitely better to weather illness and treatment privately, as you said.

As for returning the work – the reason is nobody's business. If you project that attitude, people will stop be curious and asking questions pretty quickly because they'll realize they are not getting an answer.

One day if they are sick, they'll understand. Illness and medical treatment are both highly personal matters. There is not a lot to be gained from sharing them widely even though there is temptation in that direction.

[agatha56]

I myself have decided to not tell people other than my boyfriend and 2 of my very dear friends who I trust. It is a shame that you can be made to feel dirty when you have this disease but that is just the nature of human beings. I think it is more fear than anything. When I first found out that I had this I wasn't worried about me but I was scared to death that my boyfriend would be afraid of me. Well he surprised me and doesn''t treat me any different than before I told him. I wonder if I would react the same way. Anyway, I find it easier to keep it to myself and 3 other people. This is hard enough to deal with I don't feel I should keep explaining myself. Also everyone thinks you have it because you did something wrong. I think I got it from working with a patient years ago when I was a new nurse.  

[Rockerforlife]

The reality is.Hep C is looked at as a dirty disease...no matter how you got it....telliing someone you hep C is quite the shock to that person...just dont  get a T- shirt that advertises you have it...i said i wasnt goin to tell any one...but i finally did...i mentioned it to emplyment insurance ...i was so streesed out one day whenn i called them and have to explain my financial situation and stuff....im not sure if this was a smart thing to do..but i dont think they can tell the whole world...arent they under some kind of confidencialty codes ??...anyway...i really dont give a flying f.uck who knows anymore

ive got enff on my plate to worry about

[newleaf09]

I've worked through 6 months of TX and go on extended sick leave starting Monday till I finish treating and turn back into a normal human.  I told my husband the day I was diagnosed.  Took 2 weeks to tell my 2 adult kids.  Had to tell my Mom since she kept accidentally being with me while I was doing the doctor dance (going for tests, being obviously nervous about getting results back.  Swore her to secrecy but she blabbed to all siblings (man I'm afraid to get old!).  

I told one close co-worker, asking her to let me know if I acted weird (irritable).  Told my boss that I had advanced liver disease and would be on long-term medication that was going to wipe me out but it would make me well.  He backed me up to the big bosses to take the leave.  I am responsible for a large group of volunteers who talk talk talk.  Interestingly, many of the women noticed that I seemed 'wrong' but when they asked me they accepted "I'm on medication, the rest is private".  None of the men ever noticed anything.

Tell those you HAVE to tell because your absence or lack of participation will make a problem but even then you don't actually have to tell them your diagnosis.  "I'm on medication that makes me tired and my doctor wants me to rest more" is plenty good for most.

[Rockerforlife]

I think i made a mistake by not telling my former employer ,i thought it best to kept it secret...i dint know i could ask for sick leave...and not reveal the trun nature of my ilness...if i did this at the beginning i would proberly still have my job,because once you have doctors approval fro time off...the company will have a hard time firing toy...o well...live and learn the hard way....i just pray to God i get SVR this time around...then they can kiss my a.ss

[IMstacie]

"Scary to think that so many like this walk among us (and procreate too)".   YES, and they also VOTE!  That's how we got Arnie the Taxinator in California.

I told my employer and co-workers that I was Ill and undergoing treatment - period!  I do not tell anyone the medications. In the early weeks you could only tell I was sick with my death mask and walking so slow.  I have no problem discussing some of the sx but I know people and once they get a thought in their head it will never be forgotten.

-Stacie

[copyman]

I agree with the ignorance of many people when it comes to HCV. Because of the stigma I also have told very few people I have it. It all comes down to more money is needed from the goverment to educate the public. Unfortuately all the money goes to HIV / AIDS awareness.

For the men:
as for kissing pigs, i have kissed a few when i was drunk in my younger days. they were not the swine type of pigs if you know what i mean :-)

[Tippyclubb]

I choose to tell a limited amount of people ( 3 ).  The rest were told I would be on chemo, as I felt the need to explain my disappearance from family and social events.

I am comfortable with my decision because I did not want to discuss how I contacted this disease. In my case, some things are better left unsaid.

That is why this forum is so important because its the only place we can go where people truly understand what this experience is all about, from beginning to end.

[GreatBird]

I've told all sorts of people and haven't had a problem. My family knows. My coworkers from my old job know. Many of my friends know. No one has stigmatized me and frankly I wouldn't care if they did. If they can't treat me fairly then I don't need them.

OTOH, I don't really like telling people because then I find I have to reassure them that I'm okay and go through that whole song and dance and sometimes it's nicer just to be able to pretend that I'm not treating. But sometimes they've asked me questions about the disease and it's a great opportunity to educate people.

Often I'm asked "how did you get it?" I quickly have come to realize this question comes more from a "could *I* possibly have it?" than a "you're such slime because you've got it" point of view. I tell people that I don't know--because I don't. There are three distinct possibilities starting when I was six years old.

I honestly think that when more people go public and put a real face on this disease it will stop being stigmatized and the government will be forced to spend more money on it--like they did on HIV/AIDS. At the same time, each person has to be comfortable in their decision to share--or not to share--their condition and their knowledge with others.

[DragonSlayer45]

I agree about education of the public and how some people have reacted with the "Could I possibly have it and not known?". I have experienced that as well. There are some who generally care. I have also experienced the exact opposite. Here is an example:

A few Years ago(2001?), when I first knew I was positive. I was busy learning all about the disease, educating myself as much as I could, and deciding a course of direction that made sense for me.

At that time there as someone at my work who had Hep C and pretty much went public and began treating. I had not talked to this person at this point yet about Hep C, just heard that he had it and was treating (which I knew was most likely Peg and Riba).

My boss (not his boss) made a comment in front of a group of us (in a meeting), that has always stuck with me. He said "yeah, he has that Hepatitis C thing" and proceeded to make a face like he was totally skeeved out by that information. He also then said very sarcastically "Gee, I wonder how he got that" which was in reference to the fact he was a biker, had long hair in a pony tail, and tatoo's. He left no doubt that he thought of him as less than human, and he had also made the insinuation that he got it from IVDU.  I was flabbergasted, appalled, disgusted by his comments, his judging of this person, and general lack of compassion for a fellow man.

I was upset by this.  I could have used this as an opportunity to educate my boss about this disease and I could have even reported him to human resources. I decided against all of the above as I realized that would pretty much be political suicide (work politics). I also decided at the time to just keep it all to myself. I have always been a very open and honest person. That very moment cemented my decision on not sharing with too many others.

Incidentally, he is still my boss and when I had to take some time off due to treatment, he had to sign papers from human resources that I was under doctors care and taking some time off. He inappropriately asked me "so what's wrong with you". I did not need to say anything (privacy laws). instead I looked him right in the eye and said I have Hepatitis C. I proceeded to tell him I most likely got it from a car accident in 1987 where I spent a week in intensive care. I had a blood transfusion from loss of blood. I was busted up pretty bad (broken back, ruptured lung, multiple lacerations). He said he was sorry to hear that and he hoped I recover soon. I also could tell by his tone and body language he was not genuine or sincere in his comments. I asked him to please keep it confidential (which he is required to do). From that day forward he has never been the same toward me.  I was not only one of his best, but one of his favorite employees.

I also knew  that he is the type of person that likes when things or people cast him in a favorable light. He will back away if anything casts a shadow. Very political creature, which is most likely why he is in a management position.

Everyone has to make there own decisions

That is just food for thought. Not everyone is like him, but they are out there and some have positions of power.

[copyman]

I guess I'm putting my foot more in my mouth but I wanted to clarify my post above. as for the pigs i kissed in my younger days, i did not mean fat i meant "easy" :-)

[Bulldoggergal]

I told everyone...I want them to know it is out there and and there is a very good chance that someone they know and love has it right now!  I ask them if they've ever had a blood transfusion before 1992, or when they had a baby did they get blood...or did they ever have surgery and get blood...and maybe not even have known about it!!

I want to educate those who ask and those who don't or are "idiots"...well, that is their problem.  I want people to ask their doctors to be tested...the docs aren't going to recommend it.  I ask people if they had a tattoo or ever snorted cocaine, even once.  

I only came across one situation since 1997 when I got the diagnosis, in which someone was worried they might get it from me.  That lady was old, had HepA as a child and was worried, and she was ignorant about many, many things...so that's her problem.

I figure it's part of my job to make everyone aware of the HepC since the doctors and the government aren't doing it!!  If I can save one person...then it is worth it to me.  

I understand those who chose not to tell...each individual deals with the "stigma" differently and are in different situations job wise so this worked best for me.  

My mother started the first Fibromyalgia group in Dallas...back in 1980's...when nobody knew and/or diagnosed it but the same amount of people had it then that do now.  Thank goodness she spoke up...even went to Wash. DC to try to get funding for Fibro research!!  I feel she made a difference!  Most doctors thought it was "all in her head"...most of the family did too...and still does all these years later.

Education is key!!  We've got to get it out there for people to see and hear about...and to get tested!!!

But that's just me...I've never been afraid to be different.  It takes all kinds to make the world go round...all kinds!!  Even the ignorant pig kissing fools!!  lol

[rita863]

Great post Dragon, as always!

I was one of the people who told everyone, my boss, the people I worked with, all of my family and pretty much anybody who asked me if I was sick!
I was lucky to have adult children and didnt need to deal with the playground parents. (Had they been younger I might have done things differently)
I did get the look a couple of times, and proceded to explain to them how hep c is transmitted.  Whether or not they listened or even cared, I will never know, whether or not they where/are talking about me again I will never know.  

The bottom line is ignorance will never change!  We all do what we need to do to get through treatment.

Dragon ~~ How are you feeling now that this is you last week???

peace
rita  

[Rockerforlife]

We hear more about1000 people a flu than we do about 200 million with a deadly disease,..something is not right

[nygirl7]

We hear more about1000 people a flu than we do about 200 million with a deadly disease,..something is not right


Awesome point - and a mild flu to most Americans at that.  No transplants or death involved. Like I always have said - the healthcare system doesn't want to pay for the avalanche that they would receive so.......they just don't talk about it.  Nice.

[hopeful51]

If you don't want people to know something tell no one...

I also only told immediate family and a few good friends and asked to please not tell anyone else. Well my family kept their mouths shut.However one girl friend said one day my mom is praying for you and her son was just devsstated when she told him. I was furious.
Then one of my best girlfriends husbands told his brother who in turn told one of his friends and while at a B.B.Q this guy I had meet only one other time wants to know how I got Hep-c again I was furious
It has put a strain on both of these very old friendships they just are not the same.
I never told any one at work and now am very glad I did not.

IF YOU DON'T WANT SOMEONE TO KNOW SOMETHING TELL NO ONE.
Words to live by no matter what the reason.

SSHHH Hopeful51

[mikesimon]

I never cared whether anyone knew. I do not work for anyone either so I cannot speculate how it might have affected my workplace had I been open about it.
Friends? If "friends" are going to treat you differently or think differently about you I would not value the friendship.
It may appear odd that while I have been quite open about HCV and I did have a liver transplant in 2000 (which was news in my area) I don't think more than 4 people have asked me how I contracted hepatitis c. Perhaps it may have been maybe 5 or 6 but hundreds of people know I was transplanted and very few asked me how I got it. I have been told that I am somewhat unapproachable so maybe that explains it.
I was never in the least bit ashamed about any of it but I really was quite scared and depressed. Social stigma never figured into any of my emotions.
Mike

[comeagain]

I guess if the "easy womens" are pigs  thats makes almost every man a swine doesn´t it? Since we are more than easy most of the times !!

Conclusion if you don´t want the swine flu don´t kiss men womenfolks, and you guys keep straight!

ca

[Rockerforlife]

I think 35,000 a day...not sure on those numbers.....still get infected    EVERY DAY...time will run out one day and we will all be up the creek

[Rockerforlife]

Tell someone the last time you took a dump....and everone will know.....its the nature of the beast....PEOPLE YAK

[jdwithhcv]

I told people.  I think the more we are upfront about this, the more people will learn that Hep C can happen to anybody.  My friends and family were helpful and supportive.  Hardly anybody ever asked how I got it.  They have seen me through chemo in the past and they were just relieved that I did not have a recurrence of cancer!  

  

[Rockerforlife]

Each year, there are about 35,000 cases of acute hepatitis C.


IWAS RIGHT

my memory seems to be ok


http://www.allabouthepatitisc.com/readytolearn/about/statistics.jsp

[hopeful587]

Very thought provoking viewpoints/ comments...I can relate to each, and respect your personal choices concerning whether to disclose having HEP C / Undergoing Tx.

I chose nine yrs ago to be open about having HCV with close family, friends, my church and Bible study group. The circle has widened to include more family members when I began tx and those whom I feel I'm to talk to about it.  For me the journey has been very freeing, educational, and empowering. I have been thankful for the prayers and support of others. When asked  questions I have tried to educate.  I had multiple risk factors: From being a wild child and using drugs as a teen, working in my 20's as a radiology tech exposed frequently to blood in ER/OR or just performing my duties. I had two surgeries complicated by blood loss prior to '92.  So I can't be positive, but feel probably through the drug use.
While initially I felt shame and fear of being judged for the stigma of having an "unclean disease", over the years God has changed my heart greatly.
First of all I, was just as SHOCKED at the number of people that shared with me that THEY LIVE WITH HEP C.  Respected people in my community, my neighbor and block captain down the street, long trusted nursery worker at church, professionals.  While some people  don't know HOW they contracted it, some do.
Hasn't the Ad compaign called Hep C the Silent Epidemic? So far all the ads I've seen have been pretty ugly. Not enough funding...  Drugs on the fast track are not happening fast enough....many of us are cirrhotic. Frustrations over Too Few representing and fighting on our behalf....too much stiga, too little truth.
   I'm in my 13 week and God has used you  ALL greatly.  When I first came to the forum, my first Friend CC reached out to me, challenged me as another Believer in Christ to ask God what HIS PURPOSE was in all of this for me. She brought up speaking at our churches, ministries, public schools to kids at risk.  What about opportunities in our communities...all sorts of groups and organizations.  No it's not their business -- BUT  How will people change views and support our cause if we don't?. Hep C is not just the disease of IV drug users, though many of us baby boomers experimented and have paid the consequences.  This disease does not discriminate, so many have been exposed...so many remain at risk.  People WILL perish for lack of knowledge.  There is a time to be silent and a time to speak up.  May 19th, Hep Day?

Praying for you,
Hopeful 587

[Rockerforlife]

36.000/yr newly infected=
3000/mo infected=
100/day infected=
4/minute infected


To me this is worst than the swine scare

[Rockerforlife]

Does it not say in the Bible disease will be rampant in the last days??...i just pray this swine flu dont get out of control...it may make the hep C look like picnic

[Mr Liver]

Your referenced website does not have numbers that are in concordance with those whose job it is to track diseases.

"What is the incidence of HCV infection in the United States?
Although only 802 cases of confirmed acute hepatitis C were reported in the United States in 2006, CDC estimates that approximately 19,000 new HCV infections occurred that year, after adjusting for asymptomatic infection and underreporting. Persons newly infected with HCV are usually asymptomatic, so acute hepatitis C is rarely identified or reported."
http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm#section1

New yearly infections of HCV have dropped 85% since the 1980s. From a high of 240,000-300,000 new infections PER YEAR  in the US to a projected high of 16,000-18,000 this year. The burden of HCV will continue to climb as those infected in the 80s are now cycling through the health system. Since almost all new infections are IVDU-related it is expected that the new infection rate will eventually decline further yet in response to better testing, education, and counseling of this high risk group. Just like the swine flu let's not turn HCV into some type of major health threat when it clearly is not.
ML

[Bill1954]

Thanks for sharing truth and sanity :o)

[Rockerforlife]

Still ,an average of 20,000 cases a year to me is a major problem...thats still 2 a day that gets infected...BTW...the new swine flu is nothing to snezze at either...the way things are going...this will be like the 1957 outbreak...and the killer flus always come in waves