How have you experienced stigma while living with hepatitis C?
People living with hep C know that the stigma is very real. Studies have shown how social stigma can adversely impact both the emotional well-being and health outcomes of those with chronic infections like hep C. We know that stigma has real effects for our community users and patient advocates, and we're interested in hearing about how this has affected you. Below are some questions to consider:
How have you experienced stigma while living with hep C?Has stigma affected how often or how you see doctors or healthcare providers?Have you felt stigma for hep C in personal or close relationships?
Oh yes. Broadlawns in Des Moines Is was gonna let me die. They never told me I was in stage 4 and had been for awhile. They had me on so much depression meds Effexor and a bata blocker something to sleep at night. I got worse fast. I had hep c for 40 years. I finished marvel a year ago thanks to dr in Iowa city Iowa or I would have died. I got real sick for 2 months then I started feeling great for about 4 months lost all the water weight. Now in the last 2 months I’m feeling crappy again. I hope it’s not back. I need to go get checked but this virus makes it impossible to get anything done. I’m glad you all are hear cause I feel pretty alone like I’m not from earth. No one understands why I have changed. I’ve lost everything It’s pretty horrible. A lot of people have done me dirty. One thing though my mind is clear and I remember stuff now so I guess that is a. Start
Hi
, thank you for sharing so honestly with us. I'm sorry you are feeling alone, and want you to know that we are with you for support. Congratulations on being cured of hep C after living with it for four decades! I hope that with some more time you start to feel better and that your liver may heal. COVID-19 has made it so especially tough to stay connected with people, I at times also struggle with this aspect of the pandemic. Have you been able to connect with people digitally or over the phone? -Matt (Team Member)
That is so true what you said. I’m in UK but problems the same. People nosy, wanting to know how you caught it etc and it’s private. The problem with hep C is that it’s so associated with IV drug use, prostitution, homelessness and such. My doctor asked if I regularly saw prostitutes. It’s stigmatic. It’s blood and that never sits well with people
It seems to me that being stigmatized is one of the reasons I have never told anybody. Especially my daughter and I take care of her children. I'm afraid of a reaction and she does over react and she is mean at times. Plus the stigma of telling people and they instantly thank she's a drug addict which honestly I was so I have no fear of telling anybody that. But I was also married to a man for 18 years who had hepatitis C the whole time we were married. Do I know which one it was no. This is the reason why I have put off treatment for such a long time was because I never told anybody. And I have no symptoms now it's time to take care of it.
Hello there. I'm just seeing this. You are not alone. SO many people don't want to talk about Hep because they just don't want to tell that whole story or have to defend themself. I hope you will at least talk to a doctor you can trust. The treatment doesn't take long at all and you may be able to treat without anyone ever knowing. I just wrote a blog about being afraid to talk about Hep C and you can read it here. https://hepatitisc.net/living/concerns-treatment
I've been through this, and you can get past it. I have grandkids too and wanted to live a long time to watch them grow up. I'm sending you all best hugs right now and please keep us posted on what you're thinking about with treatment for Hep C.
Best xo, Karen (Moderator)I hope you are keeping up with the latest on treatments. They are fast acting and have few side effects. Your sentence touches my heart. I was able to treat and move on with my life even though my liver was damaged. I'm truly hoping that you will be able to talk to someone about treatment soon. Is there a medical provider you can trust? Do you have family members you can talk to?
Sending all Best, Karen (Moderator)
My experience was a little different. I had liver disease, but I didn’t have hepatitis C. A few years ago, I underwent heart and liver transplant evaluations. In the course of these evaluations, I was asked if I would willingly accept an organ with Hepatitis C. Being thoroughly informed, I signed the paperwork to receive a “high risk donor” with the possibility of the organ donor having Hep C. As an optimistic person, I looked on the brighter side of things, which was the possibility to spend more time with my family and friends. However by signing the paperwork, I received some “backlash” from my family and friends. They were unable to fathom my reasoning of going this route. My medical team was very positive and encouraging throughout the whole process and I never felt as if I was guilty for receiving a Hep C positive organ. My organ donor was a 29 year old female
intravenous drug user, who gave me the best gift. A second chance of life.
