Social Stigma and Hep C

   I want everybody to try to be honest with themselves, with this one:  when you find out a person has Hep C, which one of these type of thoughts first comes to mind:

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0%

 (0) 

They look like a drug addict

0%

 (0) 

They dont look like a drug addict

8%

 (2) 

They must've caught it from a transfusion, because they dont look like a drug addict

91%

 (21) 

Who knows how they caught Hep C, there are many ways to get it

23 Members voted

[1oftheclub222]

when my boyfriend told me he had it, I knew he was never into IV drug use, I have known him since he was very young, early 20's, he told me he may have gotten it from snorting coke in his younger more foolish days, or possibly from vaccines in the army back in the late 70's, that one made the most sense to me. the more I learn about it and see where he is at with liver damage, I am pretty sure that the army is probably the most likely suspect.  But I have to admit, my old friends that I know did drugs back in the day, I do feel compelled to tell them to get tested.

[Dee1956]

Hi Bo, I voted however people outside of this forum would probably vote differently, i.e. the person must have done drugs would probably be the first thought.  It is not fair and it really doesn't matter how they got it but I have found people to be very judgmental.  I think it makes them feel better as if they could never get it as they are not at risk.  
What really gets to me is when someone asks me how I got it, as if they have every right to ask.
I do not think people ask that of cancer patients
Just my two cents :)  I hope you get what you are looking for

[willbb]

Never wasted any time thinking about what people look like in relation to their illnesses.

[Revalation]

I've recently had a doctor say to me "I bet when you found out you had
Hep c you wondered how you got it"

Actually, that was not my first thought.

Reva

[mdudley]

stigma :  A mark of disgrace associated with a particular circumstance, quality, or person...

The only "stigma" that should be associated with HCV is Gilead Sciences failure to move forward with drug trials that can cure 100% of Gt1s... that is surely  a "mark of disgrace"!!!!

Warmest regards,
Margaret

[hrsepwrguy]

I doesn't really matter how someone got it gets my vote

[BoceprevirGal]

  I agree with you Dee, that people who are judgemental may be feeling scared, or insecure, concerning how they feel about them-selves.
   I was glad to see that the CDC has gotten the figure out: 1 in 33 Baby-Boomers has Hep C.  
   I also dont believe I.V. drug abusers, currently using, or who have recovered (I never bought that "recovering" word somehow...I think a person either has cravings to use, or doesn't) should be stigmatized.
  I work with people who are Dual Diganosis, which means they suffer from mental illness, and drug addiction.   The fact that I am non-judgemental with them, makes them feel comfortable about talking about the fact that they use I.V. drugs, and they know that they can trust me.
     The main line I use, with my children as well, when something that they feel is embarrassing, or shameful has occured with them is, "It could happen to anybody"~
  

[jules2551]

Bo I don't really know what to say about this poll.  Honestly I really don't like the answers to your poll.  I mean what does a drug addict look like?  I've know many addicts who look like the guy next door and go to work everyday.  And I've know many people who don't do drugs or alcohol and look like sh^&!  And what does a person who receives a transfusion look like?  All I can say is that you never know who you are talking to so it's best to be non-judgemental.

Have a great day!
Jules

[shayne50]

"you would not worry so much of what people think of you if you relized how seldom people think of you"
Unknow author

[willbb]

I appreciate you looking up on google the definiton of "stigma" .however I prefer this one  :)

"small spot, mark, scar, or a minute hole; -- applied especially to a spot on the outer surface of a Graafian follicle, and to spots of intercellular substance in scaly epithelium, or to minute holes in such spots."

Best
..Will

[mikesimon]

Like Will I never wasted time thinking about this.

[dontworry_behappy1]

I agree with your answer to this issue.

[Dee1956]

Sorry I did not notice answer regarding about how some one looks.  I guess I had a brain spasm.  And here I thought I was doing so much better :)

[can-do-man]

To be honest I never really thought about it, besides whats a drug addict look like?

Could someone please tell me what those silly "tags" mean? I never had understood the reason for those.

[mdudley]

That definition doesn't do me any good because I can't figure out how to apply it to Gilead...LOL!  hmmm...unless "scaly???  Best to you, Willbb!

[Idyllic]

I guess I have had Hepatitis C for too long for any of these things to run through my mind although in the beginning they surely must have. Don't get me wrong though since I can be nosy nonetheless! In fact part of the reason I blew off my group is because there were many first timers there and I personally found these kind of curiosities more characteristic of them. That sounds snotty and I honestly do not mean it that way. I just couldn't connect with them. This was my own experience so I hope I do not step any toes here.

Anywho, first of all, not that this has happened very many times but when I meet someone in real life who has Hepatitis C it's as if we have some kind of an instant bond no matter what our apparent differences. I usually want to know if they treated before and how many times and if they are SVR are what. I have noticed that even folks who are SVR for years and years still keep up with developments in the HCV arena.

Actually I have found the same thing when I meet someone who has a friend or relative who treated for the virus.

[Idyllic]

Also, just based on how the title of this post is phrased I do not think those who actually have the virus are the ones who perpetrate social stigma. I am just saying . . . .

[willbb]

To be honest I never really thought about it, besides whats a drug addict look like?
--------------------------------------

I think it was "fretboard" who said here a couple of years ago ..
..."it was the people you see that have the one shoelace untied and they also have "a secret handshake"

[Idyllic]

Not all addicts are IV drug users

[1oftheclub222]

My brother and his ex-wife were herion addicts runnin on the streets back in the 70's.  they always looked impecible.  they were con artists who could out con anyone. they told me they had to look dressed to a T, how else were you going to make money on the streets?

[HectorSF]

My first thought? None of the above addiction obsessed "answers".
Answer: Have you tried treatment?

"The fault, dear Brutus, is not in our stars, But in ourselves".

Hector

[Willy50]

I have only been DX'ed for about 8 years.  I bought the line about it was my semi wild youth in the mid 70's, but why were none of the people I hung with infected? Hmmmmmmmm?

I saw a lab test from 20 years ago while cleaning the attic. My LFT's were in the middle teens while I was an average alcohol user, back in '91.  I rather believe that after 15 years or so of alleged infection while occasionally drinking my LFT's would have been higher.  Contrast it to another insurance medical checkup 10 years later and I was not drinking at all and my LFT's had tripled.

The difference was 10 years and 2 surgeries.  It is entirely possible that I got my infection from a medical setting, but I have wondered about dental or cosmetology college cheap hair cuts.

I just can't think of any even remotely possible vector; sexual, military, tattoo etc.  

We may assume the worst and it may not be correct.

Willy

[flcyclist]

The poll's answers focus on one main issue - "They look like a drug addict" since this is included in the first three responses.  

How someone caught HCV is not my concern, nor should it be anyone elses concern how I aquired it.   I agree with Jules' response and also can not respond to the poll for the same reasons.  

[nygirl7]

I think it's a very silly thing to worry about.  I had every possible way I could have gotten it except for a tattoo and well...I guess it depends who I know and how I know them for them to think they know how I got it when I certainly do not.

It just doesn't matter, I'm so over it I dont care who knows.

[Idyllic]

I saw your original post you made back on April 29 about how after all these years compelling evidence came to light that made you reevaluate how you contracted the virus & reconcile that with how you thought you contracted it.

I too made similar assumptions that seemed reasonable about what I understood about my "high risk" behavior at the time.  Over the years I had the luck to stumble onto other events that strongly urged me to consider the possibility I may have contracted HCV much later than I assumed.


**I recall the point of your post was not lamenting how you contracted HCV and decisions you made along the way based on that assumption. Rather, it was to encourage us to be judicious about what we disclose to people and especially what we allow in our medical records.

There was more to the post than that but a similar thing happened to me. I am rarely in a formal circumstance where I am asked to speculate about how I got HCV but I know I am not nearly as candid as I used to be because I am not entirely certain. It was a poignant post and I never had the chance to respond.

[1oftheclub222]

i understand that sometimes people think the these things of us when they find out...i recently ran into my ex sister in law, haven't seen her in many years, maybe 15 or 20.  she knew me since i was a little kid and knows my past pretty much.  I am pretty much the white sheep of my family...When I told her i had Hep C (thinking she of all people would understand) she said her first thought was, "ohhhhh, 1of is not as innocent as she lets the family think she is", ha...I didn't think she would think I was using IV drugs, cause she knows me, but I guess she did...I am rethinking my position on who I tell...I don't anyone to discriminate against me or my kids, just because people don't know the facts.

[1swimmer]

I mentioned to my doc, how I was pleased that he had never asked how I thought I got infected. I was crazy at first; what a waste of energy that was.
Truth is, I have become a germaphobe. I do not want to treat only to be reinfected. There are a lot of people who don't know they have it, as we all know, and that is a problem.
The issue of addiction is ugly. It is not a moral issue but more of a medical one. I managed to get sober and when I see someone with an addiction problem I see myself.
I have a job that requires no disclosure of my hep C; I wish it was otherwise.
C

[orphanedhawk]

I guess Hector and I think alike on this one because my first thought was  'none of the above'.

Recently someone told me her brother had it. I asked how he was doing, health wise.
How he got it never even occurred to me.
The only time it does is when it's a Vietnam Vet.
Then I assume they got it in boot camp from the airjet innoculations.

[nygirl7]

Agree with Hector and OH.

I have a friend here at work who's brother just had a transplant.  It never occurred to me to ask if he had HCV or how he got it or anything I Just said how marvelous for him I'll say a prayer.

[fretboard]

What really matters is how the public thinks and unfortunately alot of them think we all got HepC from using dope and that's a shame.  

[BoceprevirGal]

Hi Can-Do, I sure can:  if you go up to the medhelp search engine box at the top right, and put in one of my tag words, like "stigma", then it will bring up all the Posts made on here, where the OP has used that tag word.
  So, for instance, if a person was doing research on Social Stigma, they could put that in, and come to my poll, and then read all of our answers ( actually, I havent answered my own poll yet)
   The problem with the poll, is that now I have read all of your answers, and  it is human nature to want to be "accepted by the group". So you see, if I gave an answer, that was...say, different from the Posters on here, who have been here longer than I, or who have more stars than I, or are just more likable then I am ( I dont have many friends "IRL"), then I would furthur alienate myself from "the group".
   So, of course, public polls are "weighted". But I was still interested to know what would be said, either way, and appreciate all of your answers

[BoceprevirGal]

  About ten years after contracting Hep C I came up with tow of these kind of marks, which you described in your post, one on each side of my knee, and have alwys referred to them as my "Stigmata"....although, at the time, I was delusional from meth abuse, so I thought I was Jesus Christ,and that it was where I had been nailed to The Cross +

[BoceprevirGal]

I was making an attempt to write the poll from an average persons mind, not from my own Politically Correct position~
   But yes, I went to Center Point, for Treatment, back in 1998,and have enjoyed over 12 years of a "non-addiction obsessed" life-style, you?

[BoceprevirGal]

  I hope they managed to get into Recovery~  I was a meth addict for four years, and the first three years I looked great.  The last year I "used", I ended up shaving my head,(thought The Worms were ating my brain) picking my face, was tossed into jail for two months, let out, to find myself homeless ( I hadn't paid my rent, while in jail), and ended up at my" Rock Bottom",(it started out so glamorous) and I'm sure when some people looked at me, when I was hiomeless, that the word, "Bag-Lady" came to mind, although I only had one back-pack.
   Luckily, my homelessness only lasted a year, and I went to In-Patient Rehab. But it is hard to recover psychologically, from an experiencelike that, so I still usually only hang-out with other homeless people, because I find them to be less judgemental of me~

[1oftheclub222]

I hope they managed to get into Recovery
_________________________________________________

sounds like my sis in law is somewhat cleaned up, not sure about my brother, he's doing 25 to life, we have a  don't ask, don't tell type of relationship :).

I know he has hep C and B but never treated, not sure that is an option in prison.

[BoceprevirGal]

  33% of the Prison Population have Hep C.  I think I will google that imfo, and find out if Treatment is available for them~

[HectorSF]

I agree more education needs to be done regarding hepatitis C. That is true of many diseases and conditions. It is not like we volunteered to be ill.

As far a social stigma is concerned...
Depending on others for your self-worth is IMHO not a good way to live one's life. I don't see any teenagers on the forum, so we are all adults and grown ups here. Time to grow up. Time to stop worrying about what others who lack compassion and are ignorant think or have to say. This is our lives. I don't need permission from anyone to live the way I choose to live. We all have our challenges whether it be a disease, relationships, a handicap, career, whatever. Who can judge us or what we have been through. Nobody except ourselves.

Anybody that is hurtful to you is not worth your time or worth getting worked up about. The haters have more issues than I would ever want to even imagine. That's why they are haters. Hey, even Justin Bieber has his critics. You can't please all the people, all of the time.  ;-)


Hector

[willbb]

Hey, even Justin Bieber has his critics.
--------------------------------------
Not according to my 8yr old granddaughter!   Blasphemy!  

[LookingForward12]

I agree with fretboard. It's not so much what I think, because I know what I know about Hep C. For me it is a question of what other people may think...and where I live drug use would be the first assumption. It's why I have not told very many people exactly what it is I am taking chemo for. I'd rather them think it was cancer. Maybe once it's all over.......who knows.

[LookingForward12]

And let me clarify that one more little bit...small town....nosy, gossipy people....and I am a public official and retired teacher. Just not dealing with it while going through treatment.

[BoceprevirGal]

One point I want to make is this: A few people did speak up about their particular route of transmission: they shared that they had had a blood-transfusion, etc. One Poster mentioned that she got it from a Tattoo Parlor. A couple people felt comfortable mentioning that they had family members with Hep C, who had drug problems, etc.
   This in The Internet, and this imfo will never go away. These days, people can miss out on getting an important job, due to their employer finding out what they have posted on their FB, and other websites,(orlose a job they have) etc-
   Because I am almost 50 yrs old, have a secure job, hopefully protected by my Union,(and not looking to change careers), and another non-profit job, helping other addicts, who are still suffering, I felt comfortable revealing that I did have a drug problem in the past, and I would guess that I caught Hep C from a syringe, that I bleached a couple times, but apparently you have to bleach and rinse, SIX times, for that method to be affective.
   Okay, I just had my two shots (Inf and Procrit) and I am rambling, but
what I want to point out is that maybe in order to get rid of the stigma associated with Hep C, that we will also have to work on the stigma of I.V. drug abuse. It is a huge cultural taboo, in my opinion, although in Europe they I have heard they do have "Needle parks" where syringes can be bought form a machine, and it is fenced off, to protect minors, etc.
    I think it might be easier than trying to convince The Public other-wise, because the stats are there, and many,many people catch Hep C, from I.V. drug abuse. most of the addicts I know, have it, end of story.
  We have come along way, with HIV education, but mainly, because The Gay Community stood up, and marched, and shouted slogans, etc. They organized together, as a group.
   Today I am wearing one of those rubber bracelets, it is yellow and in red writing it says, "Hep C can be cured" I have had two people tell me that it cant be cured, and that I am B.S.ing, so we have to plug on, with the education

[belle19]

that quote is from eleanor roosevelt.  belle

[rivll]

You got some good discussion out of that poll. I didn't take it because I really don't look at people as drug users, this or that. But it is true I have had some rather strange comments made to me about how I got it. I did have a transfusion in 85, but who knows and finally it is irrelevant. I love the last post of Hector's about being adults...I think it is worse to dwell on what others may think of us than whether we judge ppl with Hep.C-cause obviously we really suck if we are busy thinking about that, with one another. And Shayne's Eleanor quote made the whole thread worthwhile! That was great!

[desrt]

Destroying your liver with daily abuse of good scotch is more socially acceptable in this country than having done one stupid thing 40 years ago. This is why the movers and shakers in the boardrooms of this country have developed 'compassionate care' programs to help keep HCV patients off transplant lists. After all, who wants to wait in line for a new liver behind one of 'those' people.
(The above is my speculation and should be taken as such. Compassionate programs also probably have to do with tax write offs for a product needed by an uninsured/underinsured population.)

[glucklich]

I stopped caring a long time ago after my life changed so dramatically. I was not a drug addict , rather the most rarefied of geek. Hep C did not care. it did not ask to borrow my mind, it took it. If some fool wants to think less of me because the model they carry with them for Hep C's propagation is confined to addiction and IV drugs, I will not bother them with a different point of view.

After all it is not like there was a time before Hep c had been identified that blood products form multiple people were deliberately mixed together to create a product that  was distributed by the medical community to the general population to protect the individual from Hepatitis.

[HectorSF]

Hi.

I am glad to see you say that your statements are speculation on your part so I wanted to give you the facts because I know you are someone who is open and willing to learn as much as possible of hepatitis C.

First, the fact is that the largest group of patients suffering with liver failure and are waiting for liver transplants in the U.S. have liver disease caused by hepatitis C. So they are the largest group of liver disease patients receiving transplants.

Secondly, persons that are active alcohol and drug users can not be listed for liver transplant in the U.S. They are excluded. Period testing for alcohol and drugs are performed on all listed transplant patients to monitor compliance. So no one is waiting behind an alcoholic drug addicted transplant patient.

As far as compassionate care/expanded access programs for hepatitis C treatment. It is a non-starter. In fact the only HCV drug that has expanded access is Telaprevir for use in "countries in which telaprevir is not yet commercially available and who are not eligible for enrollment into a clinical study of telaprevir".
http://www.clinicaltrials.gov/ct2/show/NCT01508286?term=%22Expanded+Access%22+%5BSTUDY-TYPES%5D&recr=Open&rank=72

To view all "Expanded Access" [STUDY-TYPES] | Open Studies follow this link.
http://www.clinicaltrials.gov/ct2/results?term=%22Expanded%20Access%22%20[STUDY-TYPES]&recr=Open

Cheers!

Hector

[orphanedhawk]

I'd like to add one sad fact to what to Hector's comment above. Anyone who uses marijuana will be excluded from the transplant list.
This sadly happened to a man in Southern California, whose doctor prescribed it for him, for his pain. Despite this fact, he could not get a transplant.

To repeat what Hector said, hep C is the number one cause of liver transplantation in the US.

[Ironpony]

When I was in the hospital, I probably saw 10 different nurses/techs doctors.
When finding out I had hep c EVERY single nurse immediately said,"How did hi get that?" Before anything else. One even skipped that part....her first words were just, "Let me guess...heroin?" -Thank God I was not riba raging then and too anemic to "set her straight."I was born in '83 so a blood transfusion could have been possible and have frequented nail salonand had tattoos.  I did get my virus from drugs, but was appalled that she just came out and said that.

As for the poll...none of the above. The first thing out of my mouth when finding out someone is positive would be,"have you had a biopsy," as I would be genuinely concerned for their health.

As a younger hcv -free person I knew the modes of transmission because I liked to read medical stuff. I do think more people (myself included and those nurses) assume most young people caught it from drug use....because that's what the medical info has told us. Unless someone had track marks had to toe (with very apparent scarring not related to repeated bloodwk. for medical reasons) I would never ever assume they were a drug addict based on their appearance.

[Ironpony]

This whole deal reminds me of phych class in High school...we were learning about the 'Belief system'.....These are all things that we learn from about 1 7 years of age that sets up our whole belief system for life. We were discussing if it is at all possible to change ones belief system once it has been created.

We were asked to write on a piece of paper what we thought an alcoholic looked like. I wrote,'A homeless man with a dirty face, long stringy hair, dirty ripped clothes and bad teeth.  He had paper had around his whisky...'

Even knowing that alcoholics can be doctors, lawyers models and the guy next door this was the FIRST IMAGE that came to mind. It was very interesting. I think the thing to do in these situations is to have knowledge override these 'beliefs.' It is okay and human to have a first reactive thought. you cannot stop those if you tried. But it is good to have your brain weed out the nonsense!

[fretboard]

"Before anything else. One even skipped that part....her first words were just, "Let me guess...heroin?" -Thank God I was not riba raging then and too anemic to "set her straight."

Unfortunately that is a fairly typical response as I had almost the exact same thing happen to me when I went in for one of my liver biopsies.  Some people are idiots, even ones who work in hospitals!!

[Ironpony]

*that's 1 TO 7 years
  
(And the homeless dude is holding a paper BAG)

You would think all of my auto corrects would have forced me off my lazy butt on to the computer now!

[Ironpony]

You should have heard her tone too! It was sooooo snotty. she thought she was a genius showing off in front of the lab people.

[willbb]

The most striking thing about this poll was that "one person "  actually voted that they believe they can tell an HCV " transfusion " person from a HCV" drug addicted" person??

[uncledudeness]

...that's exactly what i was thinking will.....does it really matter? i was born very good looking and no one questions why; why him and not me....????

ahhh, well that's what i think....i guess the very good looking people get HCV too....like me...

[nygirl7]

I looked better when I was on them than now that I'm not.............go figure.

Boy we haven't done such a great job educating the new people have we?

[rivll]

The new people are educating themselves just fine-it is the population outside of the hep. community that the information about transmission and stereotypes.

[dontworry_behappy1]

I agree with your posting on the issue.

[HectorSF]

First, Let we say I have never had a nurse ask me anything about my hepatitis C, liver disease or liver cancer. Their job is to take care of my needs that day. They aren't my doctor who is managing my medical treatment. Do they ask all patients how they got their disease? Its none of their business frankly.

If any person (admin, nurse, social worker, etc.) at the hospital that I have been going to for the last 10-15 years ever said "Let me guess...heroin?" I can tell you with absolute certainty they will be either disciplined or fired and not be allowed to work with the hospital's patients. It is our own responsibility as patients to stand up for ourselves and others to make sure we never allow anyone to disrespect us because of our illness. Just look to the history of the AIDS movement if your need an example. They were discriminated against in every way imaginable. But they refused to put up with that type of ignorance and poor treatment. They didn't say "whoa is me, gee why is the medical system treating us so poorly when we have a life-threatening illness?" They fought back and demanded to be treated with the care and respect we all deserve as human beings. If we had more people with hepatitis C who refused to be treated poorly we would be better off than we are now.

I would encourage anyone who is discriminated against because of their disease to report that person to management. They should not be allowed to interact with patients needing care. Put them behind a desk shuffling papers, out of sight and out of mind, fine. But they should never work with patients again until they can prove that they can provide humane care. People's prejudices whether (racial, religious, sexual orientation or cause of illness) has no place in a health care setting.

Hector

[rivll]

Agreed. And very eloquently stated.

[dontworry_behappy1]

I have been discriminated against all my life.  I can see it and smell it.
Changes are made by the answers you give and how you respond.  
Beating people up because they asked a question that might be discriminating...hmm.  I recently had someone behind the medical counter ask this question.   Is the person your with OK with this.  I just smiled and
and kinda chuckled......  and said, yes because they love me.
Have a Great Evening All

[orphanedhawk]

Hector's absolutely right.
Their conduct is far from professional and should be reported.

[Ironpony]

Yes, I should have reported her. I have no excuse for not other than feeling like death that whole weekend so I didn't care at the time. All I cared about was living. I do not want her to disrespect any other patients. I go to this hospital weekly for bloodwork so it will be very easy to say something. Right now I just know her as being dark haired and with glasses...hopefully they have a list of everyone who worked with me from the ER to admittance.
I think the other nurses that asked were curious. She was straight obnoxious though.

Now that my head is more together I will make sure this does not get by me again. Even if I'm to weak. ..I'm sure hubby will throw some punches on my behalf. This has to stop.

Laura

[flcyclist]

Good for you Laura.   We shouldn't tolerate this disrespect from the staff while coming to their office for treatment.  I understand your not feeling well and wanting to let this slide.  I had a similar situation at my hematologist's office with a nurse who had very sloppy techniques, touching their gloves to the floor, etc.  I asked them to change gloves and later talked to their supervisor who thanked me for bringing it to their attention.  It is the right thing to do and likely not the first time its happened.  Bring your hubby for moral support.  

[nygirl7]

The most striking thing about this poll was that "one person "  actually voted that they believe they can tell an HCV " transfusion " person from a HCV" drug addicted" person?? ."

The new people are educating themselves just fine-it is the population outside of the hep. community that the information about transmission and stereotypes. ."

Apparently the new people in here do need a bit of learning it appears to me. The stigma is practiced in here just as well as outside obviously. If we can't get insiders to understand how can we get outsiders to?

[HectorSF]

I didn't mean to single you out. Anything I say, I apply to myself as well. I understand that we may feel caught of guard when feeling weak, vulnerable and depended on others in a medical setting. But for myself if I don't like the way something has been done than when I feel better I will follow up on it. Make my opinion as a patient known. That goes for appreciation too. I always write letters to let my nurses and doctors know how much I appreciate their help when I am going through something difficult. I also tell them face to face and let them know that I would be happy to write a note to their boss letting when know what a great job they did taking care of me. When someone does a great job I think they should be recognized for it as well. As a department manager this was my same approach to promote job satisfaction and to promote improvement in job skills. Unfortunately people tend to only voice their criticisms while taking for granted the things that are done right.

As you may know I have had countless procedures over the last number of years including a number of evasive procedures such as my localized chemo treatment. Many of them are not pleasant to undergo. But with the help of numerous folks I have gotten through them all. From the techs that setup the OR, anesthesiologists to the surgeons and interventional radiologists. They have all been kind and helped to make me feel relaxed before and during the procedures. I know I have been very lucky and had exceptional care. I don't take that for granted. And I feel very sad for those who have had lesser qualities of care. For the last year they have kept me alive with my cancer and will, to the best of their ability, keep me alive for the next 6-9 months until  I receive a life saving transplant. How do you thank someone for keeping you alive? I haven't really figured that one out. I just know I am grateful and live every day knowing that tomorrow is never guaranteed.

We all do the best we can. I just think we can always do better if we try harder. The only way I know for us folks with illnesses to be treated with dignity and respect, is to demand it. If we don't do something about it who will? We can grip among ourselves, but we are just preaching to the choir. By interacting with others when appropriate, we can educate them to see that we are like all ill people; in need of care and support which is why we are seeking medical attention.

Cheers!

Hector

[dontworry_behappy1]

I agree with your last comment on this issue.

[nygirl7]

It's sad Cheppie many people got HCV by experimenting with drugs when they were just kids and they grew up to be mature members of society. The stigma ***** and we certainly can't have it in here or we're all sunk!

:)

[screaming48]

I just feel sorry for the person who has it. My first response would be oh crap and then I would ask if they were going to treat it.

[BoceprevirGal]

Well, my Treatment Doctor happens to be an Internal Medicine Doctor, and an Addiction Psychiatrist, and I remember her telling us, if a person injects I.V. drugs, for a month, then there is a 50% chance they will have Hep C, but if they continue on to become addicted, and inject drugs for a year, then they have a 90% chance of contracting Hep C.
   Back in the 90's, when she was doing intake work, at a methadone Clinic, she began noticing that most of the addicts had Hep C.
  I go to a Hep C Support group, at her Clinic, and there are many people who attend these meetings. Some are Hemophiliacs, who sometimes even come from other States, to talk with my Doctor, because she is willing to treat people that other Doctors arent willing to treat, because of their health, etc.
   When I first attended the meetings, I said to myy husband, lots of those older ladies in there looked very square, and two of them are nurses, you dont think they were Wild Childs' of the 70's, do you?  And my husband would tease me back, saying they were still wild, and that a bunch of them kept winking at him, etc.
   I know it may be "wrong" for me to think these things about my peers, and my curiousity doesn't stem from meaness of spirit.  In fact, I really enjoy making people feel good about them-selves, and enjoy helping out animals, and the environment, etc.
  I am just interested in Human Nature,  Psych, and Sociology, etc.

[child24angel]

So ? what are you saying here? what was the purpose of this
poll? IT DOES NOT MATTER WHAT PEOPLE LOOK LIKE!
OM good God!
As long as I've been here I've never seen this' anything like this!!

HCV does not care and neither do I. I still don't know how some of
my close friends got it , because it just does not matter!!!
Re:
Hemophilacs , your doctor is a good doctor however , I would like to know what the heck makes her so special than say..... some of our other hepatologists
and hematologists? treating a person with hemophilia takes, more than just
a MD , it takes all three on board.
It's not easy, not at all.  Hemophilacs have been treating for a while now,
nothing new.

[hrsepwrguy]

"it is pretty rare for people to reinfect, after Tx, even people who actively use according to stats"

"Hahahhh.  Where do I get this stuff?  Like I have told you guys over and over agian, form my Most Beloved Doctor, Dr. Diana Sylvestre. She is an Internal Medicine Doctor, and an Addiction Psychiatrist"

"I got my Stats from her Lectures, concerning reinfection"

"Well, my Treatment Doctor happens to be an Internal Medicine Doctor, and an Addiction Psychiatrist, and I remember her telling us, if a person injects I.V. drugs, for a month, then there is a 50% chance they will have Hep C"

?????????????????????????????????????????????????????????????

[nygirl7]

I'm pretty sure HCV is like pregnancy, you can get either on the very first shot.

[BoceprevirGal]

Hugs back atcha Keith

[BoceprevirGal]

  I am SO glad you dont discriminate against people.
In a Society where I see so many homeless, disabled people sleeping on the streets, I sometimes feel surprised that more people dont help them out, by giving them money to stay in a motel room, for the night.
   When I was pregnant and homeless, many good people did give us donations, and I was able to stayin a motel every night,and subsequently, I got back on my feet.
   But I also still feel the discrimination, here in my own home town.  Although I have been clean and sober, for almost 13 yrs now, my own mother and three sisters will still not speak to me.
    By reading the comments and results of this poll, one would get the impression that there was NOT alot of Social Stigma, concerning Hep C.
   It might also be the area I live in,  the San Francisco Bay Area.  I know that people are continually practising Classism. They check out what kind of car I drive. What symbols are on my clothing. For Instance, I was lucky enough to find a discarded pair of shorts, that had the NorthFace insignia on them, and I noticed people were more friendly to me (if they didn't see my crappy car)
   They look at what kind of shoes I am wearing, what kind of hair-cut I have  (I cut my hair myself, to save money, so I cll it my CaveWoman Look)  Classism and Stigma are alive and well, at least here, where I live.
  

[can-do-man]

Internal Medicine Doctor? Thats what my gp is but i wouldn't want her treating my Hep-C

[jules2551]

I am really surprised that the people living in SF would be prejudice or judgemental.  I lived there for several years and thought just the opposite since such a diverse community lived there.  I have lived all over the US and I thought that the people of SF were the most laid back and caring people I had ever met.  JMHO

Jules

[orphanedhawk]

Honey, truth be told, most people don't give a hoot about what anyone else is wearing.

Years ago I recall fussing about what I was going to wear to meet someone. Then I thought, 'what were they wearing last time I saw them?'
I couldn't remember.

Money, clothes signs of material wealth do not make a person kind, caring and compassionate.
It isn't what makes them feel good about themselves.

What values are important to you ?
Those are the attributes to aspire towards.

I've found if I can focus my mind on kindness, it helps me feel better about myself.

It's not what you wear, it's how you feel, inside, about yourself.

[1swimmer]

We all know that people are judgmental.
We are our own worst critics.
People are usually more concerned about themselves, than you.
Love and respect yourself.
Love and respect others.
Be grateful and communicate that.

If people in the health field are not able respect clients, someone needs to know. I don't want them to be fired, I want them to be educated.
Cheers,
C

[mollybaby]

Im very honest when it comes to telling people how I got hep C. First of all I think we have to be for ourselves and what they think does not really matter to me because if they want to judge me then go right ahead....what matters is the fight and trying to make people aware and knowledgeable of what could happen if they make bad choices in their life(which I did) but what matters is what your doing now and helping prevent others by educating them. I have also found that most people dont care until it happens to them but that is the way our society is in general..."it could never happen to me ."

[can-do-man]

I know many people who dress, drive, and live in fancy homes. and the truth is they don't have a pot to **** in, they are in hawk over their heads. Always thought SF was more liberal and caring. Guess i'm lucky to live in the midwest, frankly we could give a sh!t less what you wear or drive.

[orphanedhawk]

I'm sure you meant hock not hawk, so I won't take offense :0

[BoceprevirGal]

  Well, I dont live in San Francisco, I am across the bay, in a much smaller town, and I have lived in my home town, my whole life.
   So the people I feel are judging me, are people I went ot grammer school with, and high school with, and some of them are my FaceBook friends, but they dont even awknowledge me when they see me in town, etc. Alot of the people I grew up with, are very affluent, and havent been affected too much, by the decline in our economy.
   In all fairness to them, when I was in my twenties and early thirties, I was a pretty loud and obnoxious drunk, and then a Crankster Gangster. I have changed, and forgotten that I used to do horrible things, like floss my teeth onn the bus, while talking about my Hep C, etc. I am not proud of the fact that I used to show up at our local coffee shop, tweeeking my brains out, with my head shaved, wearing a bath-robe, or worse, a pair of mens boxers, thinking they "passed" as shorts. I was pretty delusional, thus, the shaved head...I kept thinking I had "worms" in my hair : (
   Years later, I did watch some 20/20 show where someone did come back from a trip from South America, and a Doctor did find some weird looking worm, under the persons scalp..aaaghhhh.
   But yeah, some parts of San Francisco may be less judgemental.
I usually find, when I travel out of The Bay Area, like thru Nevada, that the people in the really small towns, are alot more friendly

[orphanedhawk]

If you show through your actions that you are not the same person you once were, some people will gradually come to accept that you have changed.
Some never will.
Things you have done and forgotten, they perhaps, have not. And it may not have been your shaved head or weird clothes. It may have been your vibe or your actions.

My best advice is to focus on awareness of your self and kindness to all.

[BoceprevirGal]

Yes, exactly.  That is what I strive for, and I dont neccesarily expect kindness back, that's not what it's all about. I do it for the simple act of doing it, to ease someone elses pain, if only temporarily.
    And I have also been surprised and touched by the kindness some of
my aquaintences have shown me, in the past, when they knew I was going thru a rough time, when one of my family members was ill, etc.

[HectorSF]

The Bay Area is not San Francisco folks, don't get the two confused. It is like saying Hoboken is NYC. Forgetaboutit Frankie!

I live here in the city of San Francisco not Oaktown, Oaklawn or some suburb mall town. I've been here for about the last 30 years and SF is the most opened mind city in the US. I am from around New York City. I've been all over this country and SF has largest variety of people, food, things to do, micro climates just about anywhere. It is pretty too. Go to any country in the world and mention the Golden Gate Bridge. They have all heard of it.

SF=Live and let live.

jules2551 is more accurate in her assessment in my opinion. And as far as hep C or whatever, no one bats an eye about how you got it. This is the city of Haight Ashberry, The Fillmore West, Love-ins, Tune in, Turn on and drop acid and all. Gee, people took drugs in the 60s? I'm just shocked, DOH!

Personal pot use is pretty much legal. I wish those damn High School kids would stop smoking it on the city buses cause I'm always getting a contact high.
It is legal to walk around on the street naked. Unfortunately it is always the last people in the world that you want to see naked (must be a law of the universe that Newton forgot about) that decide they just need to take their clothes off. I personally think its fine to be naked, but there outta be a law against ugliness. They could use some serious gym time too. It is really a crime against nature (or anyone with 20-20 vision) with some of these exhibitionists. I mean their bodies look more like a surrealist sculpture than a body of a man or woman. Lucky being in San Francisco we have karma here. Otherwise known as payback in most places. When that SF fog rolls in they freeze their tootsies and a few other parts off. ha ha

From the US News and Travel Report:
'Why go: With a reputation as one of the world's bohemian capitals, San Francisco is a city of unabashed open-mindedness and fierce uniqueness. Frequently referred to as the most European city in the States, San Francisco is both laid-back and cosmopolitan. '

Love it or leave it!
Hector

[BoceprevirGal]

Yes, definitely,  Hector is right. Luckily, they built a subway here, called Bay Area Rapid Transit, only we just call it The Bart Train, so I have been traveling to San Francisco since I was 9yrs old.
    As a teen, I spent many happy hours, roller-skating in Golden-Gate Park, and as an adult, I enjoy the free concerts also put on, at Golden Gate Park, such as The Summer of Love, etc.
   There is also great food there, and museums, tons of different events, etc.
The Bay Area is just a rough term, that Ithrow around, to keep myself my where-abouts anonomous, since I do live in a much smaller town~

[rivll]

OMG, I am still cackling! You are really hilarious, Hector.
I lived in SF. for 20 years and am in Oakland for 5. It is true, S.F. is a very open place and lovely. "Oaktown" is not as pretty but I find the people much the same. I have just recently mentioned to acquaintances that I have Hep C (though undetected) and no one bats an eye, except to tell me about a family member or friend that has it.
I sometimes long for the experience of real seasons, but I have to agree SF and the bay area is a great place. When I lived in SF, I was a city snob too, but Oakland has humbled me and helped me see the error of my ways (the belief that the East, North and South bay revolve around Planet SF. :-)

[BoceprevirGal]

  I have always loved Oakland also. As a child, many happy hours spent at Childrens Fairy-Land, and Lake Merrit (and I took my kids there also)
   I also think ol' Jerry Brown did a pretty good job, at beautifying the area, around 20th and Broadway, the way he put in some old-fashioned looking town-houses, along with those cobble-stoned streets.
   Anyhow, The Fox is now putting on some good concerts, and there is  the new Rudys' Cant Fail Cafe, which makes that area much more lit up at night, and safer.
     I wasn't so thrilled about Laney College being so close to Oaksterdam, since I dont want my kids to smoke it, but I guess we have this problem in all the towns thru-out America. Our kids are either gonna smoke it, or choose not to~

[1swimmer]

I grew up in San Francisco. One learns to be accepting of different cultures and ideas early on; it's the exposure.
There are people all over the world with similar experiences. They learn to live and let live.
Okay, so my point is this, no one can make me feel bad about myself, other than me. If someone is mean or rude to me I make choices.
I am human and i can be judgemental too. I take note of my thoughts, and try on different points of view.
That said, all should know that, San Francisco is the best city in the world.
C

[Dee1956]

WOW!

[dontworry_behappy1]

Hector, SF is exactly what you said it is : ). Beautifully put. I was born in
the  Bay Area.  I have a picture taken at Fort Point with the Golden Gate
in the back ground.  Its an amazing picture.  I will post it when I'm UND.
I think I was 18 at the time.  It will be interesting if you can guess the year.

[MeWithC]

>>>>   I want everybody to try to be honest with themselves, with this one:  when you find out a person has Hep C, which one of these type of thoughts first comes to mind:<<<<

I guess I would say, That looks like it could be MeWithC.......