In many countries, there is a huge stigma associated with having Hepatitis C.

The Hepatitis C Stigma

For reasons that still elude me, people with Hepatitis C are terribly stigmatized in many countries. For some reason, people with Hep C are made to feel ashamed of having this disease, as if they had committed some terrible sin.

Yes, some people contracted Hep C through drug use, through sharing unsterilized needles but many have contracted Hep C through blood transfusions, dental work, and many other sources that were no fault at all of the infected people.

Such attitudes are really bizarre given that Hep C is not a sexually transmitted disease and a large proportion of people with Hep C have become infected with the virus as the result of faulty medical or dental practices, through absolutely no fault of their own.

Because of this stigma associated with Hep C, many people keep their Hep C infection hidden, which greatly reduces their chances of getting assistance.

The social outcasting that occurs in many societies when it becomes known that a person has Hep C is truly terrible because the person has to deal with the double trauma of learning that they have a potentially fatal disease as well as the trauma of being ostracized by family and friends.

If this happens in a low income situation, where the chance of being able to access treatment to cure the Hep C is almost zero the situation for the patient is even worse because they can see no light at the end of the tunnel. All they see is continued social isolation and a gradual deterioration of their health until eventual death.

In this post, I share some of the often devastating experiences people with Hep C have had as a result of the stigma associated with Hep C.

The Philippines

Sir Greg, thank you for all your help. I’m sorry if I had to ask you about my medication for my illness. You see, when they knew that I have hepa C, all of my relatives rejected me. They loathe me. And I cannot afford all medication needed because I only work in the construction company.

Hep C Stigma USA

BH

I stupidly told someone i thought was a friend at work that i have hep c. Within 2 days of me telling her she called our corporate office to try and get me fired for being a health hazard as she put it. I didnt get fired and she quit that day. That was thw worst time.

DZL

I’m sure I got hepatitis C in 1982 when I was hospitalized after a horrific car accident. I was given three pints of blood while in surgery. I immediately started having digestive issues but since nothing was known about hepatitis C and there was nothing like it diagnosed I just thought my body is changing because of the car accident and the time I had spent in the hospital. In 1985 I got horribly ill. Couldn’t figure out what was wrong with me and when they did blood work they told me I had mono because my liver enzymes were elevated. I know now it was hepatitis C which in 1985 did not have a name. For years I suffered with many illnesses. In 1990 half of my thyroid was removed because my thyroid was giving me issues and they took half of it. I now realize it was the hepatitis C. I was finally diagnosed in 1999 but I told no one because there was a stigma attached to hepatitis C people thought you were a drug addict if you got it. Over the years I may have told a total of 10 people that I had hep c. I finally did treatment with Mavyret in July August of this year. I am undetected. The end of November it would have been 12 weeks since I finished treatment and still undetected. And another week I get tested again per Doctors orders and I should still be undetected. I still even now that I’m cured have a hard time telling people that I had hepatitis C. I did not do drugs I did have a blood transfusion that was to save my life but it ended up almost taking my life. I want to educate people with what I have learned over the years. Doesn’t matter how you get it but please get treatment. I have cirrhosis and I will have to deal with that the rest of my life. I’m 66. But I will not die from hepatitis C. I now have hope

SHB

This seems to be what several people in the medical industry I’ve talked to want to know, and they seem to want me to “confess” to some drug or alcohol problem since they keep asking! Not all of them by any means, but a few (three to be exact) have really kinda grilled me over it. I’m retired now, but I was a cop for a decade and touched probably hundreds, literally, of bleeding people even though I was always careful and used gloves, scenes could be dirty and chaotic. I also have a few piercings and a couple of tattoos, so those were also potential exposures, and several medical incidents where blood was “shed” or I was poked with needles and scalpels, including my last dentist who seemed a little shady and who has since retired! If I knew where I got it, I’d tell them, but there’s just no way for me to ever, ever know. However, I do know damn sure where I didn’t get it but, sadly, that doesn’t seem to be the answer they are fishing for!

Hep C Stigma in China

Greg, I read that you are asking everyone to share their experience so you can include in the blog about the stigma associated with Hep C.

My sister lives in China and does not know exactly how she contracted Hep C. She never uses drugs.

She had two C-sections in the mid-80s and one surgery in the early 90s. It’s unclear if she contracted the virus because the surgical tools weren’t properly sterilized or had a blood transfusion (not sure if she did) during surgery.

When people in her society learned she had Hepatitis C she was generally shunned and made to feel ashamed.

Now she was cured for four years ago, thanks to you for introducing me to Parag in India, but her liver remains cirrhotic.

Her hepatologist conducts an ultrasound every three months. I also know another woman living in the same town as my sister, who also gave birth via c-section in the mid-80s. She, too, contracted Hep C. Unfortunately, she developed liver cancer and passed away before the oral medicine was available. Other than the c-section, the woman had no other surgery, so it was clear that she contracted the virus from surgical tools.

Like my sister this woman was made to feel shame of having Hep C even though it was not from any fault of hers. She died carrying this shame.

Thank you, Greg, for your continual services to the Hep C community. My sister and I have been and will forever indebted to you.

S. Han. 

Hep C in Mexico

Hola, yo recibí el diagnóstico hace tres años aproximadamente, terrible noticia. Igual no tenía ídea de por qué yo. Aquí en México aún hay un tabú sobre el virus hep c, cirrosis y me daban poco tiempo de vida. Pero siempre me pregunté por qué Yo? No tomaba bebidas embriagantes, tatuajes no tengo, no consumo ninguna droga y sólo una pareja. Recordando quizá en una cirugia de apéndice hace ya más de 18 años, es un camino muy largo y pesado. Gracias a que pude contactar al Sr. Greg Jefferys tuve esperanza, Dios tiene caminos misteriosos. Hoy hace dos años que tomé mi tratamiento he podido mejorar algunos estados de salud. Saludos desde Iguala Guerrero, México. Bendiciones.

Hello, I received the diagnosis approximately three years ago, terrible news. I still had no idea why me.
 Here in Mexico there is still a taboo on the hep c virus, cirrhosis and they gave me a short time to live. To have Hepatitis C in Mexico is like to have leprosy.
But I always wondered why me?
 I didn't drink intoxicating drinks, I don't have tattoos, I don't use any drugs and only one partner. 
Remembering perhaps in an appendix surgery more than 18 years ago, it is a very long and hard road. 
Thanks to being able to contact Mr. Greg Jefferys, I had hope, God has mysterious ways. Today, two years ago that I took my treatment,
I have been able to improve some health conditions. Greetings from Iguala Guerrero, Mexico. Blessings.

The International Hep C Stigma

DP

Thank you for addressing this topic. I’m going through treatment without much support due to the stigma associated with hepc. Most people I’ve confided in seem overly focused on how I became exposed in the first place.

EE

So many people have it and have no clue how they got it . Should not be any stigma . I say my dad had it and got treated without shame . What is there to be ashamed about ? My dad is an IT developer working in professional jobs all his life . This virus he must have cought years ago in the hospital while living in the Soviet Union . I dont feel any shames

DC

The stigma was so deep within myself that I isolated from everyone whenever possible. Naturally, I had to work. That was the one thing that kept me feeling like I was alive. But the stress of living with it and worrying about who I may have infected or could infect kept me in isolation outside of work. I was ashamed that I could of got it through the few poor choices I made in the 70’s but in reality it could have come from a dentist or a couple of tattoos, who knows. After getting my mind right through the treatment and a healthy diet I am leaning towards the smallpox shot that was administered with the shared gun. I developed anemia shortly after that and I could never run for an extended period of time without shortness of breath and an explosion of pain in my lower rib, upper abdomen area. The same area that the pain appeared in later on in life when I found out I had it. How I got it doesn’t matter to me anymore, and caring about what others perceive the infection doesn’t either.

JSw

After being diagnosed in January 2019 with Hepatitis C. I found this group of loving misfits online and they nursed me back to health… Mind, Body, and Spirit… One day at a time.

With my Hep C I had high blood pressure, brain fog, anxiety, depression, diabetes type II, heart disease, and my glucose levels were sky high and not very manageable.

On top of it all, I was weak and losing weight without trying. I was full of fear about the virus and the stigma it held over me.  I felt terribly alone with no-one I felt I could share what I was going through.

I did not how I was going to pay for the sky high treatment costs.

To say I was desperate was an understatement. I had heavy suicidal thoughts. My mind was messed up. Well, long story short, I started the process of recovery and found a caring Gastro Doctor that understood what I was going thru. I was prescribed Epclusa but did not have the money to pay for it. I ended up getting help thru a Co-Pay program.

I took the 84 day treatment one day at a time, all the while I was messaging and posting notes to members of this group… my life line was this group… I was home alone fighting the virus but had connections here that got me through all the emotional and physical trauma associated with this virus. I may have gotten the Epclusa treatment from another source but it was this online group, family, and a few close friends that held my hand through all the tears and fears. I sincerely thank Greg Jefferys and his group for my recovery. Currently, I live a life in full recovery… I have to say… What I thought was my greatest liability has turned into my greatest asset. It has changed my whole way of life. I eat nutritious foods, exercise every day, pray and meditate, and I can laugh again… loudly… the life I had was burnt down to the ground along with the virus but a new life rose from the ashes. I am CURED and officially a DRAGON SLAYER. Sometimes, you just have to “EMBRACE THE SUCK” and keep pushing forward with the plan and TRUST THE PROCESS of the people that have gone before you. There are too many people to thank here individually, you know who you are. My beacons of light and hope. Thank you for your support…. I’m alive because of you. This much I am sure

NW

Two years after being cured of Hep C I had an apt with an orthopedic surgeon regarding my knee. He saw I had Hep C from my notes (not updated with cure) and asked me about Hep C. He challenged my saying I was now cured and didn’t believe it. He asked me how I got it I said by accident. I said I am here about my knee and nothing else and walked out slamming the door as I left. Should have lodged a complaint but didn’t.

VH

I have been around co workers talking about Hep C being a dirty needle disease and make sure not to share anything with themdirty drug addicts !! I never told anyone there I had it as I wasn’t strong enough to defend myself from nasty comments or treatment. I’ve always presumed I contracted Hep c whilst aged between 18 to 21 when I experimented with recreational drugs with a few different friends , maybe 15 times over that 3 year period. I found out I had it when I fainted a few times in my early 30’s and a doctor took it on herself to get my blood tested for Hep c even though my liver was functioning reasonably well only slightly raised enzymes and my health and fitness where great. I never had any symptoms at all right up to clearing the virus in a medical trial by Gilead in 2015 here in Christchurch NZ.

I think I got over any stigma attached to having Hep C when my husband and I moved from Australia to Nz 10 years ago to the small town of Picton and I just became very comfortable with all the people I met and just had finally become comfortable with telling people about it and to get tested for it and then heard about the new drugs that came out and wondered how I’d ever get the money for them. Then a year or so later they brought a small fibroscan to Picton and my doctor suggested I have one and I got the shock of my life that it came out at 19, stage 4 cirrhosis of the liver. So I talked to people on line and hunted out any medical trials and found one eventually in Christchurch so I fitted the criteria but had to live in Christchurch so we packed up and moved to Christchurch ( 5 hours south of Picton) and I’m cured and my last fibroscan was 6.8 , my liver is still cirrotic by ultrasound but functions well on my plant based diet and healthy lifestyle, I’m very grateful to all involved on my journey from my teens to my late 50’slife is real good

KB

Hepatitis C Stigma, Hepatitis C Stigma And Cure, Stigma And Hepatitis C Treatment, Stigma In Hepatitis C, Stigma Of Hepatitis C

• Post Categories
• Uncategorized