I hear the word stigma being used a lot by people who have the Hepatitis C virus. Are You Ashamed of Being Judged for Having Hepatitis C ? We need to look at ways to deal with it head on. I have been thinking about it a lot. See, I have NO experience with stigma. If it is there, I do not know about it. But then, I live in a world where I think we can all just be nice and show love. Leave me in my ignorance. Yet I know many of you have had some painful experiences with stigma.
Some things we can change. Some things we can’t. We have got to know the difference as it relates to stigma, shame, and disgrace with Hepatitis C. Let’s play school. I’ll be the teacher. Come on.. it’ll be fun!
Let me tell you a story. There was a little old man who lived in a wooden house at the end of a dirt road. It was peaceful and quiet. One day he heard a truck driving through his gate and walked outside to see who it was.
A big burly man parked his truck in the yard and began unloading large bags of trash along the sidewalk. The little old man ran out and asked him to stop. The man continued unloading trash. The little old man felt confused and helpless. The big burly man seemed much more powerful than he was. So he stood quietly and stopped protesting.
Soon the truck was empty and the big burly man drove away. The little old man went inside and called the police and gave them the license plate number of the truck. In a few days the big burly man came back. He yelled that he had been forced to pay a big fine to the police. Then he loaded all of the trash back into his truck and left.
The little old man went inside. He knew that his property was not a trash dump site. He did not fight or scream or lose any sleep. He simply refused to allow anyone to dump trash in his yard.
Mrs. Hoyt talking now: The dictionary defines stigma as a mark of shame, or disgrace. Some synonyms are cheap, dirty, nasty, and grubby. By the way, it is also the part of the flower that receives the pollen. Yes, I get sidetracked in the classroom. Anyway..
Being marked by shame – Sometimes people use the word guilt and shame like they mean the same thing. They do not. Guilt is usually associated with something you have done. Shame is connected with who you are. In other words, we can cast off guilt by asking forgiveness or making amends when it is called for. If you have made a mistake, you may experience guilt. The only way to cast that off is to recognize your actions were painful or harmful to another and ask forgiveness. Do you need to be forgiven for having Hepatitis C? Nope. Get the guilt off this page and let’s look at shame.
Are you ashamed of having Hepatitis C? I hope your answer is no. If your answer is yes, then hunnyo, we need to talk. There is nothing to be ashamed of for having a virus. You are not the virus. You are a human being who was created to live a meaningful life. The diagnosis of Hepatitis C does not define you. It is a virus. You may have some beliefs about yourself that are holding you back as far as HCV goes. They can hold you back in other areas too.
Is having Hepatitis C a disgrace? A ha! Now we are digging in to the heart of the matter. Disgrace means to strongly disapprove of, or a loss of honor. It is usually expressed by someone in a superior position. A person in authority like a doctor, nurse, or health care worker can look on you with disgrace. The pharmacist, a friend, or your family may think of you as being disgraced because of Hepatitis C. I am beginning to see now. It is taking some time for me to understand stigma. It is about feeling judged for having Hepatitis C.
I Know Two Things That Are True:
1. You can feel a sense of shame.
2. Someone can try to impose an attitude of disgrace on you.
Shame – If you have feelings of shame, they can soak into every area of your life. Some of those thoughts can ramble on and goes like this: I am a bad person who was born in a bad family, in a bad town, in a bad state, in a bad country, on a bad planet, at a bad day in a bad life. You can exchange the word bad for poor, mean, crazy, dirty, ugly or any adjective. That is what happens when we allow shame to take hold. We never really take it to the extreme with a sentence like that one. But it is easy to see how quickly shame can take over. Everyone battles it in some areas. It takes time to let go of feeling ashamed. It will require some work.
Disgrace – If someone is saying things to disgrace you, does that mean they are right? Are you following me here? And what do we do when someone tries to impose their thoughts on us? We make a choice to accept or reject them. It is really that simple. Like anything worthwhile, it will take some practice.
So the first step is to admit that we feel ashamed about having Hepatitis C.
Here is your homework assignment: Take a negative thought that you have about Hepatitis C and write it in a positive way.
Example: If you think that you deserve Hepatitis C because of something or other, then WRITE the opposite – It is not a shame to have Hepatitis C.
Now take that statement and put it in your wallet, on the bathroom mirror, on the dashboard of your car, heck pin it to your shirt! The point is to let that sentence dominate your thoughts about yourself and the Hepatitis C Virus.
The second step is to deal with disgrace. You can choose to reject other people’s opinion of you. I do not care if the nurse or doctor refuses to touch you without gloves and mask. Do NOT allow their judgmental attitude to soak into your sense of self. They can look you square in the eye with an attitude of superiority all they want. Shut them down. Repeat the sentence that you have written to yourself and do not allow them to make you feel disgraced for a single minute.
The little old man in the story is a good example of knowing how to deal with people who try and put their trashy judging opinions in our head. We may have to deal with them without asserting our rights. That is not what matters. All that counts is that we keep their trash off of our property. 
I heard this story years ago and it has helped shape the way that I think. If someone tries to put trash (words) in my yard (head) I will try and correct the situation. If that is not possible, I just smile. I know who I am. Nobody can make me feel shame or guilt for very long. I have good words inside of me. I say them to myself all the time.
I am saying them to you. Because you will always run across someone who will judge you and try to make you feel ashamed or disgraced. Tell me where they are. I’m all over this one. Cause I love you like that. xoxo Karen:)
P.S. Don’t forget your homework! (said in a sing song school teachery voice)
If you have been judged or feel ashamed of having Hepatitis C – please let me know how you are dealing with it.
Pics via mdjunction, carformance.com, reeseinthailand,
17 thoughts on “Are You Ashamed of Being Judged for Having Hepatitis C”
I am not their problem, they are not my problem. If I am their problem, then THEY have a problem. Thanks Karen – great blogs
I love your mind set! Once we figure out that it is their problem, we can choose to reject their trash, right?
Thanks so much. I get so passionate when writing about issues that have the potential to hurt me or any of my best friends.
I’m glad you’re one of them. xo Karen:)
I am not ashamed, but they should be. I have been a nurse, most of my life; helping others. I had a sick patient, and was exposed to a huge blood splash, later contracted HCV and HBV. I have had family members, not want me in their homes, didn’t want me to use their dishes, utensils, bathroom, hand towels, or their bar soap!! They became germaphobes, and kept lots of Clorox, on hand. I just cut them out of my life, I have more than enough stress, I don’t need more. Pure ignorance!
Bonnie, You are amazing. By choosing to serve those who are sick, you contracted 2 viruses. I’m sure that you didn’t make your patients feel dirty when they were ill.
Out of “pure ignorance” is right. You can come over to my house anytime.
Thanks so much for the comment. By choosing to reject somebody’s wrong opinion of you, it may give courage to others who are reading this right now and facing discrimination because of Hepatitis C.
xo Karen:)
Fortunately, I am in a job position where having Hep C affects no one, physically or mentally. But I see a parents ignorant worries, or a patients fear with an infected healthcare worker, (again, uneducated or ignorant). And I’m old enough without any grand aspirations that would be affected by “slander”. And being a child of the sixties, it is pretty much shrugged off, or even joked about. Of course, that’s from my perspective, I’m sure many people are so totally alien to the idea of intravenous drug use, (and rightfully so, as it was a bad digression). But that was then, and I’m living now.
I believe in confidentiality, but I’ve never made a secret of it. Although, I am careful who I tell when I go to the YMCA for swimming. Who knows how some people react.
And when you’re on treatment you just want to tell everyone why you are as you are. Mostly I just say I’m on meds for a liver condition.
Thanks for stopping by. “Who knows how some people react” is a key point. I said that I don’t feel stigma. But there was always that question laying out there that made me wonder too.
Sometimes I told my story, other times I mumbled something about a chemo type of treatment. Then people could draw their own conclusion.
Honestly, when you are sick or treating – who wants to mess with somebody’s opinions? You are just doing your best to survive.
Sounds like you are doing just that. Thanks for the comment. xo Karen:)
Very good article Karen. I am going to “pass it forward” and hope that it brings some of the “closet dwellers” out of their closets. I have never felt guilt or ashamed of a virus that I didn’t even know existed when I probably picked it up in the late 60’s while working in hospitals. That is why I have continued educating and advocating to try to get everyone to Get Tested for Hep C and vaccinated for Hepatitis A and B and to get rid of the “drug use” stigma. While that is still the best way to pass hep C, it is certainly not the only way to pick it up and many don’t even have any idea where they got it. Bah humbug to the people trying to stigmatize “us”. Kelly of “Kelly’s Lot” did an excellent video on this many years ago. I will have to look for it and share it on Facebook. Thanks for continuing to educate and advocate! Great job on the article!
I really enjoyed spending time on your site last night. You’ve been a big advocate for many years! I can see that you have helped others in the area of stigma and in general support. I didn’t know… I would love to see Kelly’s video.
It is a different world today for those of us who have dealt with HCV thanks to individuals like yourself – The personal stories are the ones that kept being told over and over. Now there are large organizations like World Health and Center for Disease Control that are changing how the world views Hep C.
LOL. Bah humbug indeed. xoxo I’m proud to have you as a best friend in the battle. xoxo Karen:)
Hi Karen,
Nice to be over at your blog too 🙂
Well, I don’t know of anyone who has Hepatitis, but my Mom had it when she was diagnosed with Lung cancer a few years back. She was in her initial stage when she got it while at the hospital, and the doctors wouldn’t go ahead with the biopsy because they felt it wouldn’t be right.
There as no share or disgrace, or perhaps we all were just too shocked that she had cancer that this felt like a rather small thing that time. All this is 10 years back as I lost my mother that time, but she is all I know who had it, though had she had it without cancer too, I think she would have fought it out as bravely as she did – cancer.
Nice story and exercise too, great read indeed 🙂
Thanks for sharing. Have a nice weekend 🙂
I love reading your blog Harleena. Your way of breaking down tough issues (like your recent blog on divorce) really help to change people’s thinking. Knowing that you have struggled with your mom’s illness and continue to write about positive ways to make life changes makes sense now.
Usually the people who have been through a personal struggle – and come out triumphant – are the ones who point the way toward healing.
Your mother would be so proud of the way you manage to turn loss into hope.
I’m glad that we connected. Who knew we had the HCV connection?
Thanks for stopping by my blog. I hope your weekend is awesome. Karen:)
What a wonderful post Karen, great job.
I have two friends with Hepatitis C, three now, and four friends with Aids. I love them anyway and I don’t judge them either. None of them contracted these diseases because they were doing anything wrong. It’s not their fault so all I needed to do was educate myself on them so that I could help them if I could. One of my friends is gone now but it wasn’t because of the disease.
I love one of the sayings that a friend of mine always reminds me of. What people think of me is none of my business. They don’t define who I am as a person.
Although I have no serious illness I can’t imagine having to deal with the way people treat the ones that do. All I can say is shame on them.
~Adrienne
Adrienne, What a caring friend you are. I consider you one of mine now!
We all need to live without fear of judgement. I like the way your friend put it. Someone else’s opinion does NOT define us.
Although.. your opinion of my blog DID make me smile. Thank you so much for stopping by and your lovely comment.
xo Karen:)
Hi Karen,
Very heartfelt post 🙂
I can’t say that I’m aware of anyone in my immediate circle with Hep C – but I do know this…
the notion that anyone is deserving of judgment or shame for any reason is an illusion created by societal conditioning.
Everyone has a journey here…and in these journeys, experiences happen. Sometimes they’re positive, sometimes they come on the form of adversity. Either way, no one will ever understand what another goes through because we aren’t capable of seeing the world through another’s perspective.
And when that’s understood – judging makes absolutely no sense!
Welcome to Best Friend’s World Dana!
Your gentle attitude of acceptance without judgement is so.. YOU!
It is an illusion based on external situations. When we can love ourselves, then we can love each other more fully.
I always remember that the haters are probably judging themselves all the time too.
Thank you for stopping by!
Karen:)
omg, I love this. You know I am on Inspire. I live in a smaller SE NM town. I have been diagnosed and working up hill ever sense. My first dr. and nurse in Albuquerque’s ICU were more than slightly disrespectful. That only happened once.
I have read and researched both these diseases of HepC and cirrhosis since diagnosis. Monday or Tuesday I noticed the MyCommunities on WebMD. Highly underused, but a better group of people for active support is on Inspire.
I believe that there must of been a reason I didn’t find any online support groups in a year. I spent a year on FB playing Bedazzled. Another new Inspire member joined just two hours prior to me and she lives in the same town! We PM’d a few times that day and she told me more of her story, then gave me her #. I called her right away.
This lady, kind sounding and well spoken, had not addressed the HepC diagnosis. I don’t think she has cirrhosis and if she does it is not alcohol induced. I understand avoiding a problem, close your eyes and it just may disappear theory. Won’t happen with this this. I inquired if she had insurance and it was a problem with them, no it isn’t. We actually have the same insurance and PCP here. Then why haven’t you sought treatment or at least relief? She simply responded that she thought people would see her as unworthy due to a past she was not proud of it. I told her she just made me smirk, that how did she think I got into this situation? Sure not everyone was a wild child in their 20’s but some of us were………….Doesn’t matter what your walk in life is, being an astronaut or a parking lot sweeper the disease doesn’t care, just wants a human to infect.
So, she went to the hospital today, I had asked her if she could bring one or both of her adult children. Yes, I realize we are virtual strangers but instantly bonded with compassion. I told her I would not be instrusive, would merely sit and listen and if one of her kids would take notes for her then we could sit and discuss. I learned the way through Roswell to UNM Hospital the hard way. Trial and error. She went early and just texted me from the hospital, last word I had was diagnosis of broken bones no xrays. I will go back with her and help her however I can assist.
The people reading this mostly are not the judgers of the world. We have no business even after walking a mile in someone elses shoes. Just thank that person and return the shoes when you are done.
Holly,
I love your ending. We are all just traveling this life and find ourselves connected in many ways. I think that those who connect of medical sites have a special bond. We meet at a crisis time in our lives. I am writing a blog on that somewhere. My hand inhibits typing much. Gotta get that ergonomic keyboard!
Inspire was one of the first groups I found. I was so scared. Thought I was dying. Then I lost my log in. Those were rough rough days. I always hated reading posts from people who felt judged. I don’t always respond to posts, but I think about it and then after I finished tx, I came on and blogged. A lot! haha.
Isn’t it cool to think that YOUR words and actions can help someone you never met before. So much healing comes when we get behind each other, get outside of our own messes, and just be there for a fellow human being. You are an angel. Your compassion and lack of judgement is so very healing. Your action and words may not change someone overnight, but gradually – love always wins in the end. We could all use more of that.
I feel your love today and rejoice in your caring friendship. xoxoxo Karen:)
Hi, I wanted to repeat your words to you as they are so true of you, hope it is ok 🙂
Isn’t it cool to think that YOUR words and actions can help someone you never met before. So much healing comes when we get behind each other, get outside of our own messes, and just be there for a fellow human being. You are an angel. Your compassion and lack of judgement is so very healing. Your action and words may not change someone overnight, but gradually – love always wins in the end. We could all use more of that.
I feel your love today and rejoice in your caring friendship
Love
Dorene
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