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254544 tn?1310779332

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.
48 Responses
254544 tn?1310779332
HCV Stigma Part II

Several of Hepatitis C stigma’s negative consequences include reduced self-esteem, diminished mental health, less access to medical care and fear of disclosing a positive status. Additionally, this attitude may contribute to hesitancy on the part of some medical providers to treat people infected with Hepatitis C.

In the January 2006 issue of Hepatitis magazine, the staff conducted an informal web poll about stigma and viral hepatitis. On the plus side, 42 percent of poll participants felt they had not faced any stigma due to living with hepatitis. However, more than half of all respondents reported being treated differently due to their disease. Of those who participated in the poll, 20 percent felt they had experienced job discrimination due to having Hepatitis B or Hepatitis C, 13 percent reported hepatitis-related social stigma and 13 percent had been alienated from family and friends because of viral hepatitis.
254544 tn?1310779332
HCV Stigma Part III

Education
Any social stigma finds its roots in fear of the unknown. Many Americans have misconceptions about the way Hepatitis C is transmitted. Once diagnosed with the virus, most affected people diligently study how the disease is spread, and how they likely acquired it. However, a person without firsthand experience with Hepatitis C may mistakenly assume it can be transmitted through sharing a glass of water or even from being coughed or sneezed on by an infected person. Until all reaches of society learn the facts about this virus, inaccurate stereotypes fueled by fear will persist.

Educating yourself and others will break down the stigma associated with Hepatitis C. Many communities have Hepatitis C task forces to promote community awareness. Getting involved with Hepatitis C informational training sessions targeting local schools, hospitals, drug treatment programs, government agencies and similar community organizations will fill replace fear with knowledge, helping to remove the negative perspectives about this disease. In the words of Margaret Mead, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”

Self-Respect
If you have Hepatitis C, the first step in breaking the stigma is to start with your own attitude toward your illness. Some questions to ask in uncovering this include:

• Do you label yourself as a sick person?
• Do you expect to be shunned from co-workers, friends and family?
• Do you feel like you deserve to have Hepatitis C?

Honestly examining your own feelings of shame and working to shift those feelings into pride makes a tremendous difference when facing the world with any illness. Living in the present and looking to the future are the best ways to leave negativity in the past. By learning how other people live with the disease, many people find help in discussing their feelings at Hepatitis C support groups. In order to garner the respect from others, it is absolutely necessary to first develop respect for yourself. Additionally, feeling good is the single most important factor in living a long, healthy and rewarding life. Compiled by the Hepatitis C Support Project, below are nine tips for developing a healthy attitude:

1. Make sure you know the truth. Get accurate information about Hepatitis C. Some people mistakenly believe Hepatitis C is an automatic death sentence. The truth is, the majority will die with Hepatitis C, not of Hepatitis C.

2. Don’t make things worse by imagining a future with pain, disability or loss. Improve your odds by visualizing your future the way you want it. Visualizing health, not illness, is a powerful tool for self-transformation.

3. Maintain perspective of the big picture. Focus your attention on something that brings peace, joy, laughter and meaning. Tell yourself that difficult moments will pass.

4. Watch your words. If you hear yourself talking negatively, substitute positive phrases. Say, “I will find a way to live with Hepatitis C” rather than “Hepatitis C is ruining my life.”

5. Practice gratitude. Make it a habit to find things for which you are grateful.

6. Learn what you can control and what you cannot. There are things you cannot control, such as the fact that you have Hepatitis C. However, there are things you can control, such as your attitude and what you say to yourself about having Hepatitis C.

7. Learn from the virus. Ask yourself what Hepatitis C can teach you about living.

8. Get support. Being with others who are dealing with the same issues can bring encouragement and hope.

9. Help others. When it comes to stepping outside of ourselves, probably nothing works as well as reaching out to others who are also struggling.

By cultivating self-respect through a positive attitude and through active participation in educating your community on Hepatitis C, you can take an active role in breaking the Hepatitis C stigma and helping those diagnosed with the disease to finally receive the compassion they deserve.
137025 tn?1217768341
Wow, I like to think I knew all this already, but to read it in one (three) neat packages was pretty cool.  I struggle daily with cultivating self-respect, but then I look at how well I have educated myself about Hep C and find that quest to be a positive.  So it goes, back and forth, for me.

One of the comments...do I think of myself as a sick person?  Feeling kind of tired lately, waiting for the new PI's to come out, so I DO think of myself as a sick person.  Wow.  Bummer.  But I still get up everyday, get outside, garden, cook, all the easy things I used to do.  But if I am laser-truthful with myself, I stay home a lot.  A lot.  I have a very full life here at home, no tv couch potato stuff going on, but there is this deep need to be solitary.  I have talked with other folks who do the same, but that still does not make it the best choice.  It's just the choice I have made for now.  

I'm going to have to go noodle what you've posted for awhile.  Thanks for the good words.

Willow
Avatar universal
Hmmm-wise words. when my hubby was first dxed he felt he had to inform his boss. I have no idea why he would, and cautioned him not to, as we really did not know much about HCV. Within 2 weeks of informing the boss, my hubby's job was suddenly "downsized". A quick call to attorney and some education made suing the co. over unlawful dismissal unneccesary, his job was miraculously back again....but the stigma remains. Hubby has never felt like an outcast and truly until he developed HepatoCell Carcinoma, he was doing fine. If he could do it over again he wouldn't have told his boss. Uneducated people have said very hurtful and painful things to him, and to me about it. Like we're filthy or something---they lump every disease in with every other one and act like they're all the same. I try to educate as much as I can. Maybe a difference can be made, in time.
264121 tn?1313033056
I am just in complete denial over the fact that I may not be able to be cured through combo therapy.  I don't see how I can tell anyone at work.  I sell food products for God's sake.  Plus. I received my infection through rape, another thing I don't care to discuss with the general public.  There is a huge stigma about hepatitis C.  I think I would be kidding myself to say that there wasn't.  Other than my doctor and my mother, nobody knows, and I can't envision a time when I feel I'll be able to tell people.

In fact, I'm trying to figure out what I'm going to tell people when I'm the combo therapy.  I know I'll be quite ill.  What will I tell people at work.  That I have cancer?  I'm very scared and very lost right now, and just barely keeping the panic under control.
217229 tn?1192766004
Tell them you're on Chemotherapy for your Liver. Period, end of statement.

Get on FMLA - and get your doctor to cover you with notes.

I told EVERYONE - and I'm not going to be ashamed of a disease --- any more than I would be of getting rabies by being bitten by a dog. --- or having a cold... Or ANYTHING...

I am not ashamed...

I educate others --- and I am very open. I find the more open you are --- the more others learn and the more you KEEP YOUR JOB... the more people will understand about what you are going through.

And they will learn about it themselves --- and maybe help the world out.

Meki
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