HCV Stigma----Real vs Perceived

[Mr Liver]

We ran this in a newsletter a few years back. We even printed these up for handouts at group meetings. I couldn't find it in any of my files or archived newsletters, but was pleasantly surprised to find it online.


http://www.gastro.org/wmspage.cfm?parm1=420

[meki]

I tell everyone --- and I am not ashamed... Can't figure out why anyone WOULD be ashamed.

Who the heck asked for it?

Hmmm?

Not a damn one of you said "Hey hey HcV - come take a chunk of my life"... LOL!

I want this disease eradicated before I have grandchildren... And it won't be if everyone stays silent.

Hey livin!

Hugs to all --- And may you all be healthier today --- and in the future.

[livindabest]

Aloha all,
   I have been just reading the mail not wanting to comment much, but guess I just got to add my 2 pennys here.   A lot of this is old prejudiced  stuff.  Many of us are guilty of some form of it.  
     It just depends on where you live, I was born and raised in So.Cal.  then moved to Hawaii.   I work in "on hands"  healthcare (C.N.A.)
    I am, like Meki   (get well Meki) and  NV.deb. and others, very vocal about Hep. C. awareness.
  I made sure all  concerned partys knew of my Dx.  Family was first. The  H.R. dept.  were next,, w/ no problem and lots of support.   C is better to have than A/B  sometimes..It was never brought up after that .  Got a Excellent work review 6 weeks later.   Guess I am just saying that when it comes to prejudice, yes it sucks in all forms but it depends a lot on the region (and beliefs) of where you live.  If you in the South I bet it sucks,, other places may be cool.   Well glad I live here and if your in a bad spot try to change it if possible. Just like racial prejudice, Awareness is the answer.
            Take care, all.... R.  
  Meki--- get well soon  !!!

[Myown]

HCV is considered a Std to most people who know nothing about the disease. A guy talking about his Std would not be considered a slut, but a woman would be. He's a stud, shes the slut. Its a man's world always was and always will be.

A guy can hang around the water cooler at work and brag about how many women he slept with and get a few high fives, can a woman do that?? No way Jose. She's a slutty dutty and no high fives. I happen to think she's a slut too, but so is the guy. So maybe thats why a man can talk so freely about having hcv and a woman can't. I'm not saying HCV is an Std, I'm just trying to make a point, but its almost 1am and I probably didn't make my point because I am tired. Good night.

[JRenquist]

No one  I know has ever had a negative reaction to me - at least that I noticed - and I admit that I didn't expect them to, so that might have been the reason (?)  Everyone I know has someone they care about who has this.  One with 3 brothers who all have it.  Another whose 84 year old father  had it and passed away with HCV and  liver cancer. The only time I ever felt the stigma is when I cut my finger and went to an urgent care clinic.  The nurse was SO RUDE. I don't really care.  Why should we care about what people like that think of us?  Although I always say - when I tell someone that I have it - I didn't do anything "bad" to get it.  So maybe I do care after all.  Hmmmm...

[mikesimon]

I never got that reaction from any doctor but maybe they see transplant and that trumps the HCV so the transplant is all they are interested in talking about. Maybe that explains it. Mike

[susan400]

Hep C and HIV, like the leprosy of 2007.  Think about it, back when Jesus Christ walked this earth, people were shunned for leprosy and it was a visual disease.  Now days, if someone hears that you've got some kind of "contagious blood borne virus" well G-d forbid-stay away, put up the sign of the cross or something, to protect themselves.....   Seriously, though, I've only had a few people in personal situations treat me with a stigma thing, but more in the medical field than even in the general population.  Like you go to a new doctor (not a hep docotr, like in another field), and you have to fill out the forms and they're looking down the sheet and they see "Hep C" and they forget about all the rest of the sheet and start flipping out over the Hep.  Like that's the only part of my body and the only thing they can think about.  Gimme a break!

Susan

[Liz50]

When my hubby was first dxed with HEpc we told no one.(10 years ago) I got tested, we learned as  much as we could about the disease and then kept it to ourselves. Yes, it was the stigma thing, people didn't understand, they assume it's an STD or worse and look at you weird....hubby didn't even want to mention it on routine health screenings & such--like at the dentist's--but he realized he HAD to. After more than 35 years with it, a  liver transplant and now being on TX, we don't hold back. If somebody asks, we talk about it--trying to educate, and most people are just fine. Only two people had issues with it (our SIL's parents--they didn't want him in our "filthy" home (!!!) or marrying a girl whose father could have contracted such a "filthy" disease---yeah, they were great.) There will always be some stigma associated with it among the uneducated and ignorant---all we can do is try to educate and live with it. I totally agree with Mikesimon--we don't act asahmed, it's a disease my hubby did not deserve to get and he's not going to give it to anyone else.    

[NYgirl]

If you don't think there is any stigma attached just so these two words Pam Anderson - people will describe her with a variety of terms including hepc off the top of their heads.  Of course they think she has it because she's had sex with a variety of rock stars.......cause you know we're all a bunch of ho's in here (ah I wish! ;)

[mikesimon]

I have never had one negative reaction about having HCV. Perhaps some people were thinking something negative but I never saw any outward indication that they were and no one has ever said anything that could loosely be construed as negative. And very few people have asked how I got it. I would guess maybe 4 people at the most inquired about the cause of my infection. I am not shy about the fact that HCV was the underlying disease that necessitated my transplant. Maybe my manner precludes or discourages the types of reactions that members speak about. I don't whisper or hesitate when I speak about it - I am direct and treat the subject in a purely factual context and I don't care who hears me or how many people are within earshot. I simply don't care a bit about people drawing negative conclusions about me on the basis of my disease so I haven't felt or been sensitive to any associated stigma. Mike

[glucklich]

play a little game. tell folk you have it and see how many run away shrieking unclean!

[jmjm530]

We had an interesting thread on the same topic a couple of weeks ago when 'FloridaMouse' posted the same article.

Regardless of the article, the general consensus here seemed to be that Hep C still carries a very strong stigma for a number of reasons.

Personally, I feel the sigma carries forth over to those of us infected in various ways, including making the decision to treat or not.

Are some of us treating for medical reasons or because of the stigma?

Anyway, here's the thread for those who missed it. http://www.medhelp.org/posts/show/298399

Thanks for posting the article again, it's a good topic that affects us all.

-- Jim