Hepatitis C Community
shame?
About This Community:

This forum is for questions about medical issues and research aspects of Hepatitis C such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis. If you would like to communicate with other people who have been touched by Hepatitis, please visit our new Hepatitis Social/Living with Hepatitis forum

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

shame?

i have just been diagnosed with hep c and have read that some people fell shame at having this. I do not feel shame and no one eles should either. it is not like we asked for this to happen and not like we purposely went out and got it. so PlEASE do not feel shame.

Related Discussions
29 Comments Post a Comment
Blank
146021_tn?1237208487
I'm trying to work through the whole embarrassment issue of having this disease. I don't know how I got this, there are certainly many ways I qualify for exposure and some are nothing to be proud of.
Blank
Avatar_f_tn
Its like the smoker who gets cancer.
There is not alot of sympathy, or understanding, for this disease. Doesnt matter how you get it, there is a stereotype that exists, and most cannot get past that.
Think of when AIDs first hit the scene. Even if you contracted it from your cheating spouse, nobody heard that, they only hear that you have AIDs. Its sad.
I regret I ever told my job "why" I was treating. Their "look" always made me feel ashamed. I will not do that again.
Now I live in another state, and it will stay a family secret.
Blank
Avatar_n_tn
I have only told a my best freinds and they were pretty cool about it. But thats it no one else.
I would not tell my family, they could not handle it.
I am the only non-alcoholic sibling and they for years have said drinking relaxes you and helps you live longer and therefore because I did not drink I would probably die from some weird disease, can you just imagine how they would respond to this? No thanks, I hope I get rid of this and no one will ever know.
  
Blank
Avatar_f_tn
Yeah, Im still kinda yellow. The stomach pains are gone though. So, I guess Im not gonna worry about it
My hubby told me he noticed it a long time ago (months)
I guess I didnt notice until standing next to them in a mirror. Oh well, as long as Im not having any other symptoms, I am not gonna worry about it.
How have you been doing lately?
Blank
146021_tn?1237208487
How are you feeling? Are you still yellow? You had me really worried.
I have switched jobs 3 time since deciding to tx, and I never told anyone the truth. I am usually too trusting but this involves too much trust. I would never want it to fall back on my kids shoulders. Does that make sense? Mykids know I'm treating but I don't want them to have any repurcussions from me having hep c.
Take care
Blank
Avatar_n_tn
amen deb. i never could understant shame from hcv? 4 million have it in the usa. most all will run into someone today who is infected. why would anyone want a friend who judges them on it?
Blank
146021_tn?1237208487
Judge me all you want but I live in a small town and don't want my family to be drug into small town mentality/judgement.
Blank
Avatar_m_tn
I suffered no shame because I hardly told anyone I had it :) Disclosing your status is really an individual decision, no right or wrong here.
Blank
188500_tn?1207368551
It's not that I feel shame, It's more like...'Why the heck did I do that horrible thing to myself ONE TIME' I beat myself up b/c I was stupid and now I have to finally deal w/it after 33 yrs. I know 24 weeks isn't a long time, but the unknown is worse then anything.
Blank
Avatar_f_tn
I disclose my status to everybody, and I tell them that I never had a transfusion or shot drugs, and that they should be tested too, because anybody can get hcv.  I don't tell them about the other drugs I took (smoked or swallowed) because that doesn't pertain.  And for those here who did inject, how do they know they got the virus from a needle?  Maybe it came from the manicurist.  
Blank
Avatar_m_tn
I still haven't told the majority of my family, and will definitely not tell anyone at work.  I don't know how I got it, but because I'm gay, the consensus seems to be that I must've gotten it sexually (even from my doctor).  To complicate matters, I don't have "intercourse," and the CDC says that transmission through oral sex is not documented.  But, no matter how I got it, I still think many would say, "Well, you're gay, so there you go."
Blank
173930_tn?1196341998
Down here in Indonesia there is a lack of awareness about hep c, though seven million people have contracted this disease. I presume this applies to the rest of Asia

So when I inform anyone I have hep c I get a "duh" and then I spend 15 minutes explaining about it!

surprised and sad to know that there is a stigma attached to hep c since there are any number of ways you could get it



Blank
163305_tn?1333672171
I'll tell anyone except my mother who at 89 can't remember things and doesn't need to worry about one more thing she doesn't remember.
    I have yet to tell anyone here who hasn't responded by telling me about someone they know who has or had it. But in Thailand my dentist looked at me like I was speaking Martian. Honestly Asia is a time bomb of HCV waiting to explode.
   I took care of a friend with AIDS back in the 80's and people would tell me not to eat from the same plates! I was appalled. This was my best friend!
    LB nobody is judging you just because they chose to do things differently. We all do what is best for us, indivisually. Don't be so sensitive, sweetie:)
Blank
179856_tn?1333550962
Unfortunately - for some, there is shame.

This disease is predominantely known as a drug addict disease. Many people who have never in their lives done ANY drugs get it and feel horror that others might think they have.

Many addicts are recovering and are worried that someone might find out their "secret" from their "past".

I don't think it's the DISEASE itself that people are ashamed of...I think it's the reputation OF the disease.

The public needs to have AWARENESS and be educated about HepC before this can change unfortunately.

I do understand WHY people are feeling like they do. It's just an unfortunate thing.
Blank
Avatar_f_tn
Thank you Cindy for making me laugh today.  I know that your story is not really funny but it just appealed to my sense of the absurd.  

For what it's worth, I am in hiding and haven't told a soul either.
Dointime.    
Blank
146021_tn?1237208487
"LB nobody is judging you just because they chose to do things differently. We all do what is best for us, indivisually. Don't be so sensitive, sweetie:)"
that part made me laugh!
Next, I moved very rapidly to a new subject: I have told a few people here in my hometown that I'm being txed for hep c. Am I imagining it or are they being a little cool to me now???HMMMMM.....And would you want your health care worker to have an infectious disease if you were uneducated about the disease?
Next,I am going to raise hepc awareness kinda like the breast cancer race for the cure, but mine will be more like a crawl! So are you in on the plan to storm Washington by relay? JK!
Blank
Avatar_m_tn
I really don't care who has HCV (celebrities and the like) or how anyone got it. If people care about how I got it that is their problem. I do not think it is helpful for any of us to indulge in self recrimination about any ill advised behavior which resulted in HCV infection. Self recrimination should stop once we have made a commitment never to repeat any unhealthy behavior like that again. Once that's done we can expend all of our energy and intellect to get well and to help others make the right choices about life, HCV and treatment. I know a guy who is ashamed to have diabetes. He'll eat a donut if offered just to maintain the charade. I know a guy who would go to parties after he was diagnosed with HCV and accept a drink because he always had and he didn't want people to know he had HCV or that anything was different. He did treat and early in treatment he did accept a couple of drinks on a couple of occasions in order to maintain his secret. I think he's SVR now but that's extraneous to the point I am struggling to make. We live and we learn and it seems that most of the truly valuable lessons come from hardship and struggle. I am not suggesting that I'm proud to have or to have had HCV but I have learned a lot about myself and life and disease because of it and I cannot take the time or energy to entertain any shame or remorse. It's done and I cannot turn back the clock - if I could I'd be a doctor who got HCV. Good luck to all of you and I respect all of you who are fighting to get well regardless of how you contracted this disease. It just doesn't make any difference at all to me. Mike
Blank
Avatar_n_tn
dointime - It is ironically funny!


Mike - You've got a great attitude, I admire it!
Blank
Avatar_m_tn
I pretty much agree with Mike.  The past is done and can not be undone.  What can be changed is the present.  What could be changed is the future.

I have been forgiven by the One who really matters, am accepted by and cared for as best possible by those who matter most to me (wife and children), do not need to be concerned with what anyone else thinks as they are accountable for themselves, and need only be concerned with learning what I can from what I am afflicted with and how I can be a better person in spite of it.
Blank
146021_tn?1237208487
You make me laugh! I am getting to the point where I have said something to a few people and now I wonder if I'm imagining it or they don't like me anymore! You know me pretty good, I do feel sensitive that I lack the courage to be honest about this. But, here's another excuse, (I have many)don't you think that having an infectious disease and working in health care could be a conflict of interest to some? I keep thinking that when this is all behind me I'm going to be a hep c activist and have the hep c awareness walks for life. (But instead of a 3 day, mine will be a 3 minute relay and pass the stick to the next person with hcv, till we gewt to Washington!) So, are you with me??:)
Bug
Blank
146021_tn?1237208487
Glad you're doing better. No other symptoms fron the yellow skin? That's kind of symptom in itself, hope everything's ok.
Bug
Blank
146021_tn?1237208487
Congratulations! Two days after St. Paddy's day, I'll try to remember that. That's a long time, lots of committment, you did well for a little martian guy!
Blank
173975_tn?1216261375
Ya gonna celebrate on Uranus?
Blank
163305_tn?1333672171
Bug: Somehow I got lost on this one. Brain fog. I'm glad I made you laugh.  
Martain: I think its great you aren't blaming anyone on anything. Can you slip some of that in the drinking water?
Blank
Avatar_n_tn
I LIVE IN A SEMI SMALL TOWN. I HOPE PEOPLE IN A SMALL TOWN ARE AS NICE, Caring and understanding as a big town. i am not judjing anyone i just do not understand?
hcv is a disease from blood and many other causes. i got it from heroin and still do not care. i read an article a year ago talking how many judges,doctors,business men and prominent people just found they have it from a choice made when they were 18 yo. wwjd?
Blank
163305_tn?1333672171
Sure, I'll storm Washington with you. I'll even make posters, once I'm off tx. I'd like to see a campaign showing HCV people as we are, everyday people, not only Viet vets in need of a shave and drug users.
  BTW: I didn't know you worked in health care. And on second thought, I can think of situations where I'd prefer people didn't know I have hep. I sometimes forget that the rest of the U.S. isn't my  corner of the planet. I've  gone into hybernation of sorts so I don't have to talk about it to everyone or feel like I'm on the spot when people ask, How are you?  
Blank
173975_tn?1216261375
Sounds like fun.  Have a great time.  :-)
Blank
146021_tn?1237208487
Good today, on my way out to go to my son's soccer game. It's almost hot here. Actually it is hot! 85!
How are you? I need to check community then I'm out of here.
Take care,
Bug
Blank
Avatar_m_tn
I found this thread very interesting in that I have kept my little secret to myself until the last few months.  I feel like I'm "coming out of the closet".  None of my family nor close friends knew until then.  My boss still doesn't know what the disability payments through his company are for, what condition.

LadyBug, I wondered how old your children are.  That has always been my primary reason for keeping quiet, is because I was afraid their friends' parents wouldn't let them play with mine anymore.  My daughters are now grown and have begun telling me they've told some of their friends about my HepC for their own sake, for support and comfort for themselves, which I was okay with.  I was just watching this unfold.

What gave me the greatest comfort and confidence in telling people I have HepC is that eight years ago I moved to an area of the country that is very progressive, open-minded and accepting.  My secret was still a secret, though, until a good friend accompanying me for ankle surgery was present when an anesthesiologist blurted out right in front of my good friend, "So tell me, how long have you had HepC?"  I looked at my friend and was utterly mortified.  I was certain that after she drove me home after surgery, she would never speak to me again.  She has been no different toward me, but instead offered to (and has) driven me to HCV doctor's office, etc.  I did report the anesthesiologist to the hospital because I felt this was very unprofessional on her part.

My daughters are grown now, I'm in this wonderful community who, the more people I tell, the more people I have lay a comforting hand on my shoulder and ask how I'm feeling, when does the clinical trial start, call them if I need anything.  Wow!!  My spouse was the biggest component in my healing in that he was truly confused as to why I was ashamed of having HepC.  I had told him that I think I got it from a tattoo I got in '76 to evidence my eternal love for a boyfriend who had committed suicide the year before.  My spouse said I had gotten this disease out of the kind of love most people never get to experience and that everyone should be so fortunate as to have loved someone that much.  Again, wow!

I've only had one person look reassuringly at me with comforting eyes and then say, "Well, at least you didn't get it from shooting up!"  I then can't resist saying, "Oh, but I did!  I did shoot up!"  Maybe I'm a little out of control!  Comes from holding it in so long?  I'm 52 now, too old for this bullsh*t.  I have to say, though, that it's a relief to finally be married and not constantly be haunted with how or if to tell a guy I'm dating that I have HepC.  That was rough.  I'm still withholding it from certain people.  It's a very individual choice.  Personally, it would be nice if these celebrities would do more to raise public awareness by this, and I'll be happy to engage in any demonstration or marathon I can if someone starts one!  (after treatment, please!)
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Hepatitis C Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
How to Silence Your Inner Critic an...
Apr 16 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eaters: How to Silence Yo...
Mar 26 by Roger Gould, M.D.Blank
1344197_tn?1392822771
Blank
Vaginal vs. Laparoscopic Hysterecto...
Feb 19 by J. Kyle Mathews, MD, DVMBlank
Top Hepatitis Answerers
446474_tn?1385271190
Blank
HectorSF
CA
Avatar_m_tn
Blank
can-do-man
IN
1747881_tn?1358189534
Blank
hrsepwrguy
Greeley, CO
1815939_tn?1377995399
Blank
pooh55811
317787_tn?1373214989
Blank
Dee1956
DC
96938_tn?1189803458
Blank
FlGuy
South, FL