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Author Topic: The stigma and shame of having Hep C  (Read 12722 times)

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Offline lolacme

  • Member
  • Posts: 55
The stigma and shame of having Hep C
« on: June 25, 2015, 03:29:32 pm »
Hello everyone, I have felt the stigma of Hep C since the day I was diagnosed. It bears heavy on my soul. Outside of my immediate family my Hep C is never discussed. My husband's family does not even know I have Hep C except for his sister (who could have told the others) and if they do it is off limits for discussion. I was in an abusive relationship years ago (not my husband) and I was told during an argument "you are diseased and contaminated and I will make sure every one in this town knows you have Hep C" (live in a small town). I have never gotten over this remark even though its been 10-12 years ago. I also had a problem with drugs and alcohol for a long time..hated myself and very sad- wanted to die so I did not care that I was advancing my disease for many years. Now I am  mentally and emotionally healthy, have excellent relationships with my loved ones and I have been clean and sober for over 4 years. I am tired of feeling ashamed I have Hep C. The  appalachia area where I live has seen Hep C cases soar I believe by 364% over the last few years. I am thinking if I talk to others who have went through this I can finally get passed some of these feelings. I would like to turn the old years around into something helpful to others but I know I can never do that as long as I am afraid of others knowing. Please share your stories with me as I am tired of being lonely with Hep C
diagnosed-early 2000's
F3 grade 2-as of Dec. 2012 genotype 1a
2 attempts at Inteferon based tx stopped after 7 weeksX2
Started Harvoni for 12 weeks monotherapy-June 13, 2015 Added Ribavirin June 24th
Beginning AST 117 ALT 261 VL 932876

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: The stigma and shame of having Hep C
« Reply #1 on: June 25, 2015, 06:30:15 pm »
I am grateful that you opened up this conversation. I believe that stigma is as bad (or worse) than living with any other aspect of hepatitis C.

Very early on, I decided to come out of the shadows and refuse to live with stigma. In addition to having hep C, I also suffered from severe mental illness. Telling people I had hep C was easier than admitting my psychiatric condition. In time, I accepted both as nothing more than illnesses, and just like I wouldn't chastise myself for having pneumonia, so it became with hep C and mental illness. I am free - my mental illness has been in remission since 1988, hep C is gone, and stigma is gone. I saw my mental illness is in remission, because it was so severe, that I can't be certain it won't come back, should I ever stop taking good care of myself. 

Would love it you (and others) would share your story at Hep Stories (http://www.hepmag.com/hep_stories.shtml). Here's mine: http://www.hepmag.com/articles/lucinda_porter_2846_11259.shtml
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline lolacme

  • Member
  • Posts: 55
Re: The stigma and shame of having Hep C
« Reply #2 on: June 25, 2015, 07:25:49 pm »
Lucinda,
I would love to share my story in the future..but I don't believe its finished yet. Even after all these years, I am still growing into my circumstances.
diagnosed-early 2000's
F3 grade 2-as of Dec. 2012 genotype 1a
2 attempts at Inteferon based tx stopped after 7 weeksX2
Started Harvoni for 12 weeks monotherapy-June 13, 2015 Added Ribavirin June 24th
Beginning AST 117 ALT 261 VL 932876

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: The stigma and shame of having Hep C
« Reply #3 on: June 25, 2015, 07:33:52 pm »
It's a standing offer. You write poetically, which is not something I see often on hep C posts.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Bituman

  • Member
  • Posts: 157
Re: The stigma and shame of having Hep C
« Reply #4 on: June 25, 2015, 09:34:23 pm »
So sorry you feel stigmatized Lola.  You shouldn't feel that.  NOBODY deserves to have an illness like HCV.  Because I feel that way, I took the opposite approach and told everybody.  This includes my family, friends, coworkers, wife's family, neighbors, my dogs.  In my job we receive training in bloodbourn pathogens.  During that class I informed the class (my coworkers) that my blood was toxic.  Same thing with my road bike group.  I have one of those Road ID bracelets that says on it "Hep C." 

For security I had my Harvoni delivered to my office.  The receptionist knew exactly what it was.  Her coment upon accepting the first delivery was something like, "I can't believe I'm holding in my hand a well appointed Honda Accord.  Everybody knew. 

People that think less of you because you have HCV are at best, uninformed, and at worst ignorant idiots.  Again, nothing you did was so bad that you deserve to have a potentially deadly illness.  The ultimate irony is that a few of those that look down on those of us with HCV are probably walking around with it themselves.  For their sake I hope not, but it's possible. 

Please give yourself a break and don't worry so much about what others think.  Congrats on getting your life together!  Now it's time for you to take the next step and eject that stigma from your soul. 

All the best,

Bob
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline lolacme

  • Member
  • Posts: 55
Re: The stigma and shame of having Hep C
« Reply #5 on: June 26, 2015, 09:24:34 am »
Thank you bituman for the beautiful words of encouragment.
diagnosed-early 2000's
F3 grade 2-as of Dec. 2012 genotype 1a
2 attempts at Inteferon based tx stopped after 7 weeksX2
Started Harvoni for 12 weeks monotherapy-June 13, 2015 Added Ribavirin June 24th
Beginning AST 117 ALT 261 VL 932876

Offline Mike

  • Member
  • Posts: 999
Re: The stigma and shame of having Hep C
« Reply #6 on: July 02, 2015, 02:29:05 pm »
My HCV status was a taboo topic - one I only shared with my family - and seldom talked about.

You see, I felt like "damaged goods," and that people would not accept me if my status came to light. I carried this burden for almost 2 decades. I felt a lot of internal shame and really had no outlet, until I found this forum.

I remember about 10 years ago, I got jumped at a bar, and had the crap kicked out of me. I was bruised and had several cuts on my face. My mother and father came over, and my mom (being a mom) rubbed my head and was trying to clean my wounds. I had to stop her from doing this, because of the potential blood exposure. That was, and still is, the toughest sting I can recall regarding my HCV infection.

Since I've been cured, the burden is gone and so is the stigma - but not the memories.

Best wishes, Mike

Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline seekir

  • Member
  • Posts: 32
    • Mikey's Island
Re: The stigma and shame of having Hep C
« Reply #7 on: July 03, 2015, 03:20:46 am »
I was a member of a HepC forum which is no longer active, and remember realizing after reading other members describing themselves as "heppers," that the moniker rhymed with "lepers." I've heard people who were unaware of my condition making jokes and expressing their feelings of disdainful amusement or disgust toward the hepatitis infected. I suppose this is only human nature, and I'm sorry to admit that I can't honestly claim that I'd never been guilty of this sort of thinking before learning of my own infection. Many of us have learned empathy the hard way. So, you may want to consider granting the people who've slighted you a little slack. They haven't had the benefit of the difficult enlightenment most of us here enjoy.

Shame? You've been sober for "over four years." I'm thinking you should be proud of that and look toward the future and the new course you've chosen.
« Last Edit: July 03, 2015, 10:31:58 pm by seekir »
61 yo male
Genotype 1a, treatment naive till 8/6/15 when Harvoni treatment was provided through Gilead's Support Path after health insurer (HMSA) denied Harvoni treatment and appeal due to moderate F1/F2 liver status. Sides very mild, virus "undetectable" at 28 days.

 


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