Hep C - The Stigma - How to talk to others about this condition

Question

I would really like your views and experiences on how you handle the "Hep C" topic with others.  I find that the diagnosis has such a stigma, it is difficult to discuss the diagnosis with others.  
If I was to say I had cancer and going through treatment, people would understand and there may even be some sympathy for the situation. 
If I say, Hep C, Cirrosis, or Liver Disease...I immediatly feel a sense of judgement or shame.  The persons expression changes and seems to want to know the genesis of my virus.   Hmmm. drug user, eh?  No one thinks, " hmmm... blood transfusion, eh?  The truth is... who cares how I got the virus... it is what it is... and it could cost me my life if I don't get treatment.  
Granted, my immediate family does know of the diagnoses. I guess I am curious to how others handle the conversation with people  outside the family.  If I am down and out from treatment, how do I explain that to someone?  
Let me know of your ideas ...Thanks :) Sending healing peace and positive energy to all of you!

annieCinMD · Answer

I tend to feel people out with that situation. I've told a few people that aren't in my closest circle, and haven't gotten any bad reactions yet. One of my former high school classmates posted on Facebook that she just came off chemo around the same time I finished tx. I sent her a PM and told her I was sorry to hear she had to go through that and how I could relate because of what I had just gone through myself. I told her I wasnt' quite ready to post that little tidbit on Facebook because of the stigma. I didn't hear back for a couple days, and was thinking "oh, no, TMI!" for someone I haven't seen in 30 years. Well, she wrote back and said her husband is a GI with a specialty in liver disease and she said she was assuming I just finished interferon. Also, that lack of education was the reason for all the stigma, which I totally know is true. I was glad I told her! I've only had negative reactions when it comes to dating. Even some of those people that react out of fear usually eventually come around. I consider it a gauge of whether the guy is good enough for me. I just started seeing someone new, and since my treatment failed, I guess my gauge may get put to the test again soon!

Marcia2202 · Answer

I have been very open about it since I was diagnosed. I never had one weird look or any negativity. I must say that most people were quite inquisitive and actually wanted to know more about the disease, infection and treatment. I've only had positive reactions.
Just wanted to add that I live in Denmark.

ccld · Answer

Sharing that you have HCV is a personal decision.  However, similiar to HIV most people are afraid of contracting the disease due to ignorance about the condition.  Providing facts about HCV will help them better understand.  However, it does that guarantee how they will respond to you later. My husband has had HCV over twenty-five years. He received the Peg Interferon treatment in 2002 and the virus did not respond after 5 months and we ended the treatment.  

He was apprehensive in telling our children and other family members about his condition. We decided to tell them, so I gave them all a presentation with pictures explaining the progression of liver damage and potential treatments. Now that they all know my husband was expecting them to be more supportive. Unforunately, they do not know what to do or say so they stay away from him, which has increased his sadness and isolation when he is hurting. I pray for him often and comfort him will he is going through severe pain. He is in stage 4, yet still functioning very well by the GRACE of GOD.  I make sure he eats well, drink water and gets rest.

On a positive note he decided to go public with his condition in hopes to education and help others.  He has access to State and National forums to advocate for education on methods of transmission, treatment and Updated prevention messages.

There are millions of people with the condition.  Like you said, it does not matter how you got the disease, everyone still needs love and compassion.

justme53 · Answer

I don't broadcast my dx, but if someone asks about my health, I tell them I'm undergoing treatment for liver disease. I've worked for a small company for 17 years and I've been up front with them from the start. Now that I'm into the thick of things at 40 weeks, I would find it really challenging to hide it. The people that take it the hardest are my parents, but they would have picked up on it sooner or later. It's actually brought us closer together and more open in conversations. 

JennyPenny - that letter is spot on...........

Isobella · Answer

I only told my immediate family and a friend whose daughter has it.  And my docs.  I told everyone else I was having problems with anemia and that accounted for my fatigue and various other sx.

I hate going to the dentist now....here I am-UND for 57 weeks, and my chart has HCV on it in big red letters.  But I use that as an opportunity to educate them.  Every chance I get and in no uncertain terms.

IMstacie · Answer

Only my husband knows.  I did not tell ANYONE else.  I told them I was ill and undergoing treatment, period.

jelise · Answer

I told my family, friends, boss, and a couple of trustworthy co-workers that I was starting treatment for HepC.  I have gotten nothing but curiosity, support and understanding.  I did not tell most of my co-workers, just the ones I knew very well.  I figure it may get out at work eventually, especially if I start getting very ill, but I don't really care what people think.  If they are so close-minded that they will hold it against me, who needs their company anyway.  I have enough friends.  As long as I cannot get fired for having it, I don't care who knows :)

JennyPenny · Answer

Here is a letter some people have found helpful:

TO WHOM IT MAY CONCERN
Having hepatitis C virus, as with any invisible chronic illness means that your life as you once knew it is changed. Just because you can't see those changes doesn't mean they are not there and felt by us.

Most people don't understand hepatitis C and cannot imagine what living with a chronic illness means. With the hope that there are some who wish to understand, these are some of the things I'd like you to know about us.

Please understand that being sick doesn't mean we are not still human with all the same emotions that healthy people experience. Some of us must spend our time carefully so that we conserve what little energy we possess. If you visit we may not be much fun, but we still love and appreciate company. Some of us worry about our jobs, schooling and families. Most of the time we'd like to hear what is going on in your life as well as sharing our lives.

Please understand that one can be happy but not healthy. When you have the flu you feel fairly miserable, but we've been ill for years. We can't be miserable all the time, in fact most of us work hard at not being miserable. So when you speak with us and we sound happy, it means we are happy. That's all. It doesn't mean we are not sick, in pain and extremely fatigued, or that a miracle cure has been found and we are all healthy once again. Please don't say, "Oh you're sounding better!" We are not sounding better, we are sounding happy. Feel free to remark about our happiness. Just don't assume that it means we are better.

Please understand that being able to stand up and participate in an activity for 15 or 20 minutes, doesn't necessarily mean that we can participate for 30 minutes or an hour. It's quite likely that doing that 15 minutes has exhausted our resources and we may need time to recover. Remember the last time you played a swift game of tennis or softball. You couldn't repeat that feat over and over again. This applies to every thing we do.

Please understand that chronic illness is variable. It's quite possible that one day we are able to walk to the park, or shop in the mall, while the next day we may have no energy at all. Please don't say, "But you did it yesterday." If you want us to do something, just ask and we will tell you if we are able. If it is necessary to cancel an appointment with you at the last moment , please don't take it personally. There are days when we feel great and all of a sudden that changes and the fatigue is overwhelming.

Please don't ask us how we got this disease. There are many ways to acquire hepatitis C. Some of us made a foolish choice to experiment with IV drugs when we were young and invincible. Some of us were born with hemophilia and need to use blood products to stay alive. Some of us were given blood transfusions before 1992. Some of us are veterans who fought proudly for our country and some of us are kidney dialysis patients as well. Many of us have no risk factors at all and do not know where we got hepatitis C. If we wish to share our medical history with you, we will. Please don't be afraid to hug us, kiss us or hold us. You cannot "catch" hepatitis C from us unless there was a mixing of our blood with yours.

Please understand if we tell you that we have to sit down, lie down or take our meds, that we have to do it now. Chronic illness doesn't wait for a convenient time. It does not feel good to have to stop what we are doing to tend to our health. Remember that we didn't ask for this. We mourn for our lives before illness, when we were free to pursue all our dreams and hopes. We hope you understand.

newleaf09 · Answer

I told only my husband, children and mother and siblings, primarily so they would not be freaked out when I melted down during TX and sure enough I was very sick.  I told only one co-worker who I trusted.  I told my boss I had advanced liver disease and he was very supportive and recommended my extended sick leave.  I work with huge groups of people and I told a few that I was on chemo, so it migrated to the whole group.  This was all the truth and I am forever glad that I did not tell any but my most trusted family that I had hepatitis C.  My health is MY business and others will not die if their curiosity is not satisfied.  It's my life not theirs.

Strangers do not know that you are not always pale or breathless or that your hair is a little thin.  They are not even curious so information about your health is not necessary.

jonney4141 · Answer

my life is an open book- and i feel that there is a reason for contacting this disease, and the reason is to warn, educate, and share this with others who may be at risk, alot of young kids with these tatoos? alot of drug addicts, alot of alcoholics who do things when they are not in their right minds? health care workers who don't wear gloves or have holes in gloves while taking blood? nurses, doctors, ems etc.etc. no i do not go around in public shouting hey i have hepc, but if i see the right opportunity to share with someone who may be at risk or who asks or has family member or loved on than yes i will share, at this point i don't care anymore and dare someone to try to judge me with this. They have no clue unless they have gone thru it. I hope i have not offended anyone with my opionions.

GSDgirl · Answer

I absolutely agree with orphanedhawk.  I told whoever and got a lot of the same kinds of stories.  I knew someone, or someones brother, and so on.

Good luck

Denise

orphanedhawk · Answer

I guess it depends somewhat on where you live.

Almost everyone I've told responds with a story about someone they know who's had it or has it. 
I've heard the gamut from so and so's brother died from it, to so and so had it, did the treatment and is doing great.

The truth is if more people talked about it, we might all be overwhelmed by how many people actually are infected.

As far as ideas, why don't you gather some information about how wide spread it is, different ways its spread etc.( Then let me know!)
YOU talk about it.Show that you aren't uncomfortable and they might even start asking questions or admitting that they know others with it.

Sometimes I like to say, "gee, few people realize that HCV was spread by dentists prior to their wearing masks and gloves." Or, "did you know some people have gotten it from manicures even though its rare?"
Educate them in a kind, nonjudgmental, chit-chatty way.

You can even complain about how few people know that most people with hepatitis are average Joes and not the stereotypical drug users.

And yes, here's to sending healing peace and positive energy to everyone.
OH

Kathy73 · Answer

I really kept the information to a few select individuals. These are people that I felt would be supportive and helpful. I told two people at work who knew how to keep their mouths closed, my husband (who is supremely supportive), and three long-time friends. They have all been wonderful and no-one has spilled the beans. I did not tell my family because my parents are elderly and that would have put too much stress on them. I did not tell my children (age 23 and 21) because their father is battling Lou Gehrig's disease and they have too much to worry about as it is. And I did not tell my brothers because they live far away, are judgmental and wouldn't have been supportive. If I had it to do over again I would do it the same way except the people at work because it could have gotten out and could have caused issues. BTW, I only missed one day of work 47/47, you can do it too!

FlGuy · Answer

You can take the approach that it's nobody's stinkin' business.  If you are thinking about having such a conversation ask yourself the question "what benefit is it to me to tell this person something that they have no right to know'.  And beyond anything, utter not a word to anyone in anyway connected with your employment.

Sorry if I sound kinda wishy-washy in my response.