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HCV Stigma
This was posted on one of the other forums and I really had to share it. I've posted it in 3 parts due to it's length.
HCV Stigma Part I
found this amazing article on how others view us, and how we don't help cometimes!...it is a great read.
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August 27, 2007
Breaking the Hepatitis C Stigma
While more people are currently living with Hepatitis C than any other chronic blood-borne infectious disease, the illness still carries a stigma in many social circles. Find out how you can contribute to the efforts focusing on removing the stigma associated with a Hepatitis C diagnosis.
The MSN Encarta Dictionary defines stigma as “a sign of social unacceptability: the shame or disgrace attached to something regarded as socially unacceptable.” According to the US Department of Health and Human Services, “stigma is about disrespect.”
For some people, the stigma of living with Hepatitis C is more harmful than the virus itself. While medical research and treatment primarily target prevention and viral eradication, there is a lot more effort required to change public perception and attitudes toward Hepatitis C. There are two parts to breaking a disease-related stigma: education and self-respect. By educating communities on Hepatitis C and learning to feel good about yourself (regardless of viral status), Hepatitis C can be removed from the category of socially unacceptable conditions.
Why?
The primary reasons for any condition to be stigmatized are the lack of compassion, fear and ignorance. Hepatitis C is a prime candidate for such an attitude for several reasons:
• Fear of Transmission – Because Hepatitis C is an infectious disease without a definitive cure, people are afraid of getting it. Although not easily transmitted, people are nevertheless fearful and may shun those who have the disease. Fear and ignorance have cost those with Hepatitis C their jobs, friendships and marriages.
• Fear of Illness – Some people do not like to be around people who are sick. Being uncomfortable around others who have an illness is how certain people protect themselves from their personal fears. This discomfort may cause them to socially reject people with diseases instead of risking exposure to suffering and/or death.
• Judgment – Despite the many ways of acquiring Hepatitis C, misinformed people sometimes assume that everyone with Hepatitis C has a history of injection drug use. Even if this is a person’s mode of viral acquisition, our society lacks compassion and understanding about injection drug use. Those without personal exposure to injected drugs may judge people who have. Former injection drug users may feel haunted by their pasts and judge themselves. Additionally, many active injection drug users carry shame about their addiction. Regardless of the situation, casting judgment on a person for their past addiction or viral status is devoid of compassion for their very personal situation.
HCV Stigma Part I
found this amazing article on how others view us, and how we don't help cometimes!...it is a great read.
............................................
August 27, 2007
Breaking the Hepatitis C Stigma
While more people are currently living with Hepatitis C than any other chronic blood-borne infectious disease, the illness still carries a stigma in many social circles. Find out how you can contribute to the efforts focusing on removing the stigma associated with a Hepatitis C diagnosis.
The MSN Encarta Dictionary defines stigma as “a sign of social unacceptability: the shame or disgrace attached to something regarded as socially unacceptable.” According to the US Department of Health and Human Services, “stigma is about disrespect.”
For some people, the stigma of living with Hepatitis C is more harmful than the virus itself. While medical research and treatment primarily target prevention and viral eradication, there is a lot more effort required to change public perception and attitudes toward Hepatitis C. There are two parts to breaking a disease-related stigma: education and self-respect. By educating communities on Hepatitis C and learning to feel good about yourself (regardless of viral status), Hepatitis C can be removed from the category of socially unacceptable conditions.
Why?
The primary reasons for any condition to be stigmatized are the lack of compassion, fear and ignorance. Hepatitis C is a prime candidate for such an attitude for several reasons:
• Fear of Transmission – Because Hepatitis C is an infectious disease without a definitive cure, people are afraid of getting it. Although not easily transmitted, people are nevertheless fearful and may shun those who have the disease. Fear and ignorance have cost those with Hepatitis C their jobs, friendships and marriages.
• Fear of Illness – Some people do not like to be around people who are sick. Being uncomfortable around others who have an illness is how certain people protect themselves from their personal fears. This discomfort may cause them to socially reject people with diseases instead of risking exposure to suffering and/or death.
• Judgment – Despite the many ways of acquiring Hepatitis C, misinformed people sometimes assume that everyone with Hepatitis C has a history of injection drug use. Even if this is a person’s mode of viral acquisition, our society lacks compassion and understanding about injection drug use. Those without personal exposure to injected drugs may judge people who have. Former injection drug users may feel haunted by their pasts and judge themselves. Additionally, many active injection drug users carry shame about their addiction. Regardless of the situation, casting judgment on a person for their past addiction or viral status is devoid of compassion for their very personal situation.
I absolutely refuse to give in to the stigma. If anybody accuses me of being a doper or something nefarious, I ask them if they've ever driven without seat belts. Most people who got hcv from using drugs were engaging in stupid behavior - just like anybody else who takes risks, and who hasn't taken a risk? Just about everyone who travels to India comes back with some parasite or another. Is there a stigma to giardia?
Perhaps because I can only guess where I contracted hcv (from tools at work) and know that it wasn't from a transfusion or IVDU, I want everybody to ask their doctor for a test so they don't go undiagnosed for decades as I did. Testing for hcv should be as routine a part of an annual checkup as testing for blood sugar. Anybody can get it. Therefore, why the stigma? So I tell everybody, and then I recommend that they ask their doctor to include an order for an hcv antibody test the next time they go for blood work.
Perhaps because I can only guess where I contracted hcv (from tools at work) and know that it wasn't from a transfusion or IVDU, I want everybody to ask their doctor for a test so they don't go undiagnosed for decades as I did. Testing for hcv should be as routine a part of an annual checkup as testing for blood sugar. Anybody can get it. Therefore, why the stigma? So I tell everybody, and then I recommend that they ask their doctor to include an order for an hcv antibody test the next time they go for blood work.
hi and i completely understand your concerns .
For very similar reasons, i dont disclose my bfs HepC status to family or friends because i know the judgement will come down..
Even though he got it more than thirty years ago...
ithink the Iv drug use stigma alone is enough to scare most people..including me , initially.
It was never part of my life, but i tried to not judge my bf because of things he did so many years ago.
While i was open and accepting of him..i didnt think alot of others i know would be.
So, for my own peace ...i have kept it private.
DLR..i think you would probably be correct , that in that small town, they would then start doing things that would only hurt your children.
For all you are going thru..you dont need that too on top of it all!
Each situation is different, and we tell or dont tell for our own comfort zone.
and thats all there is to it.
big hugs,
Darcar
For very similar reasons, i dont disclose my bfs HepC status to family or friends because i know the judgement will come down..
Even though he got it more than thirty years ago...
ithink the Iv drug use stigma alone is enough to scare most people..including me , initially.
It was never part of my life, but i tried to not judge my bf because of things he did so many years ago.
While i was open and accepting of him..i didnt think alot of others i know would be.
So, for my own peace ...i have kept it private.
DLR..i think you would probably be correct , that in that small town, they would then start doing things that would only hurt your children.
For all you are going thru..you dont need that too on top of it all!
Each situation is different, and we tell or dont tell for our own comfort zone.
and thats all there is to it.
big hugs,
Darcar
I never cared much about the stigma associated with having HCV. I still don't. If I get asked about my transplant I just say that hepatitis c was the underlying disease. I am my own boss so maybe that colors my lack of sensitivity to a degree. If I worked at a place where having this disease could adversely affect my job I would keep it a secret purely for economic reasons. But otherwise I simply couldn't care less what people think. Those who would arrive at a negative conclusion about someone solely because they have HCV aren't worth caring about anyway- they're just idiots. I think that a lot of HCV patients are way too sensitive about the stigma of HCV and too concerned about the the opinions of fools. Mike
I think sometimes I worry too much about what people would think if they knew I have Hep C... but I can't take any chances. I live in a small town and have 2 kids. I have a funny feeling that if word was to get out that I had this, let alone that I got it from IV drugs (never mind that it was many years ago)- well I think my kids would suddenly no longer have friends coming over. The parent's would politely intervene and they would always be "too busy". Maybe my kids would be picked on in school for their mom being an ex-junkie- who knows. I hate that there is a stigma attached to this disease, and I admire people like Meki who are brave enough to put it out there, but I am just too afraid. If it was just me, sure, I can face pretty much anything- I tend to get a "f**k em all" attitude- lol. But when it comes to my kids- no way. They don't even know I have it- I don't wanna scare them. When I get them tested I'm not gonna tell them. It's just about the only thing I'm not honest with them about. I went for my liver bx and my son told a couple of his friends. I just told my kids I had to get my liver checked to make sure it was working OK- they know I used to drink and do drug, and that it's bad for your liver. But I made up a little answer in case any parents asked about the bx- that my LFT's are elevated and they just need to rule out any liver problems. And I normally don't like to lie. But if most primary care doctors don't know jacksh$t about Hep C, I can't really expect other, non-medical people to know anything either.
The only people I share about my Hep C with are my Mom, my Aunt, my husband, and of course, you guys. Thank God for you all, cuz nobody else really gets it.
-Dee
The only people I share about my Hep C with are my Mom, my Aunt, my husband, and of course, you guys. Thank God for you all, cuz nobody else really gets it.
-Dee
Jim - In the real world, no doubt many people initially don't hold opinions one way or another re Hep C, I'm sure many have never heard of it. Problem is once you tell them, often what happens is that they get 'authoritative' information from friends, relatives, and even uninformed primary doctors. The kind of information that supports the HCV stigma.
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I think you are pretty close to the mark on this one.
The only thing i would add is that we treat because we believe we are better off without HCV than with it. Stigma plays a part in this assessment.
CS
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I think you are pretty close to the mark on this one.
The only thing i would add is that we treat because we believe we are better off without HCV than with it. Stigma plays a part in this assessment.
CS
From article cited by 'Mr. Liver', above: "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."
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Of course we'd have to know how the study was conducted but I assume by simple questionaire or interview. 'Real World' stigma works a little differently.
In the real world, no doubt many people initially don't hold opinions one way or another re Hep C, I'm sure many have never heard of it. Problem is once you tell them, often what happens is that they get 'authoritative' information from friends, relatives, and even uninformed primary doctors. The kind of information that supports the HCV stigma.
At least that is the impression I've gotten here by countless anecdotal stories re friends, relatives and co-workers. It's also the impression I've gotten in the few cases I've disclosed my HCV status. First, not much reaction, because again, I found a lot of people just don't know what HCV is. Then later, it's obvious but what they say -- or how they act -- that they've spoken to someone. And for some reason, people seem to believe the (or act) on the most negative sources when it comes to a disease considered communicable.
Whatever the number, the stigma exists, and as the paper says, it's one reason people don't get tested, i.e. if you don't know then you don't have to disclose it.
On the other hand, it can work the other way, as I mentioned earlier. People treating more because of the stigma than because of medical reasons. I'm not going to put any per cent on this, but after reading posts here for over two years, I've definintely had the feeling with some.
-- Jim
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Of course we'd have to know how the study was conducted but I assume by simple questionaire or interview. 'Real World' stigma works a little differently.
In the real world, no doubt many people initially don't hold opinions one way or another re Hep C, I'm sure many have never heard of it. Problem is once you tell them, often what happens is that they get 'authoritative' information from friends, relatives, and even uninformed primary doctors. The kind of information that supports the HCV stigma.
At least that is the impression I've gotten here by countless anecdotal stories re friends, relatives and co-workers. It's also the impression I've gotten in the few cases I've disclosed my HCV status. First, not much reaction, because again, I found a lot of people just don't know what HCV is. Then later, it's obvious but what they say -- or how they act -- that they've spoken to someone. And for some reason, people seem to believe the (or act) on the most negative sources when it comes to a disease considered communicable.
Whatever the number, the stigma exists, and as the paper says, it's one reason people don't get tested, i.e. if you don't know then you don't have to disclose it.
On the other hand, it can work the other way, as I mentioned earlier. People treating more because of the stigma than because of medical reasons. I'm not going to put any per cent on this, but after reading posts here for over two years, I've definintely had the feeling with some.
-- Jim
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