Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: C-FIGHTER on March 21, 2015, 02:05:55 pm
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Yesterday I started taking Harvoni. I will take it for 12 weeks. After being diagnosed in 2011 with Hep C, I just now started to tell my grown children. It was not easy, and I am so worried that one of them may also have Hep. I understand the odds of passing through childbirth are about 5 per cent. They will now go and be tested themselves in the coming weeks.
I am not sure if I should share this with friends. Due to the stigma attached.
Any thoughts out there? Thanks for listening.
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Hi Cfighter ,
If you don't want to share it with others don't! That's your decision and it's fine .
We are fighting an enemy of our body trying to kill us, you need support, emotional, spiritual, physical and all the REAL Friends you have to stand with you, if they don't know your sick, chances are they are not going to be sympathetic to your condition,
Also there is a freedom that comes when your vulnerable and ask for help!
Being strong for 40'years, like many on this forum have is difficult, ask them, they will tell you, having emotional support is very important when your struggling to do the daily things that many healthy people take for granted!
Warrior friend...
Glad your getting treatment...
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Thank you Bubba
My friends would be supportive, I know they would. I guess its really me, my issue.
more than anything though I am sad about my children, I pray they will not have to deal with this. And as much as I hated to give them this news, you are right I did feel free. They have been very supportive and are more worried about me than themselves.
I see you just started Harvoni too, wonderful! I am glad you are getting treatment also. Before you know it we will be done, and put this all behind us.
Thank you for answering fellow warrior, we will slay this dragon.
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Like Bubba said, you tell who you want to tell. It's your body and your life.
I told some family and close friends. They're the ones I need support from. And being on Harvoni is an important part of my life right now. I want them to be part of my cure. I want them to celebrate with me.
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Good luck C-Fighter with your children. I bet they're virus free.
When I was diagnosed in 2007, my very first thought was whether I had somehow infected my wife. I shave in the shower and leave my razor there. Of course, I know that like most wives, the temptation to use my razor was too great! Thank God, she remains free of HCV.
Just keep in mind it's not your fault you got HCV, you didn't ask to be infected, and certainly didn't deserve it. Your children will understand that. I'm sure their first emotion upon learning your "secret" will be relief that their mother is on her way to better health.
Bob
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Like Bubba said, you tell who you want to tell. It's your body and your life.
I told some family and close friends. They're the ones I need support from. And being on Harvoni is an important part of my life right now. I want them to be part of my cure. I want them to celebrate with me
Ruthie,
thank you and you are so right. I am going to share with some close friends real soon. Because I want to and have wanted to for a while now. I believe they would want to support me and celebrate when that day does come.
I wish you well and speedy SVR
Janice
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Bob,
Thank you for your soothing words. I appreciate what you had to say, and I know everything you said was right on the money. I am sure you can relate as you worried about your wife. Thank God she is ok.
I believe I read you had some good news recently, I am sure that will continue and you will be home free very soon. I wish you Godspeed.
Janice
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When I first found out I told my family because I was concerned that I may have passed the virus on to them. I had all my children tested along with my husband and was relieved that everyone was OK. Next I told my closest friend who was very supportive. As time went on I told a few more friends who I knew would not judge me.
I think it is up to us who we decide to tell.
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Interesting topic. I told my wife when we first met. I told my kids when they were old enough to understand and not be scared or confused. I've been infected most of my life (since I was 17; I'm 63) and HeP C at times really set me back. They suffered as a result, though I've managed this as well as I could. I told my dentist and dental hygienist. I told a couple of acquaintances once at a party--I'd had Hep C so long, most of my life, that it had become so much of who I was. Somewhat regret telling them. Six weeks ago, I mentioned my then-impending treatment to coworkers who might be affected if I became incapacitated but didn't mention Hep C or Harvoni. Still haven't told my boss, because he uses that kind of info vindictively. So mostly kept it to myself. Believe, I wept when I was told that Harvoni had been approved (had to fight for it). There truly is a stigma attached to this disease and I greatly appreciate this forum and everyone who shares on it.
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I've told nobody. I didn't even have to tell my wife as she was with me in the doctors office when he told me. Besides the stigma, from comments people have made, a lot of people seem to think you can get it just being around someone with it.
I've almost for sure had it for forty years but I just found out two years ago. It's evidently not that easy to get as I've been married almost 38 years and my wife doesn't have any antibodies to it as of last week.
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Both my children are hep c negative. Dont fret too much, but they may need support to be tested, if that is the decision.
I've told quite a few people. My family knows, my friends know, my staff know, the majority of my work colleagues know, my boss knows. I don't tell everyone, but it's not really a secret.
I think I am a good person and if people choose to disengage from me because of this it speaks more of them than it does of me.
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Atomic Dog,
I appreciate your answer. It was interesting. I wanted to talk about it to others before I make a decision I regret. I did tell my supervisor because I felt I could trust this with her, and If when medication would arrive, ( Harvoni and I fought for it too) I might need to take some time from work. Having started it I think I will be ok as it turns out. :-) I did tell another co-worker ( friend) whom I trust. All this because of the stigma, I guess people with HIV go through this also.
Support and understanding is important, and most people have no idea about this disease. I guess its time for them to learn through us, one by one.
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Amy,
I too wanted to tell my kids right away. I was diagnosed in 2010, at that time the only way to eradicate this disease was through interferon and ribavirin, 60% success rate? that is not a cure! I was not going down that road, so how to tell my children at that point? I just couldn't do it then.
October 2013, Sovaldi, a year later Harvoni. This is when I decided it was time to get my life back. 2013 I found a new doctor and the long journey began, dr.visits, after a good fight with insurance company I have Harvoni in hand, March 20 took my first pill. I told my children; and they need to be tested now, ( they are grown adults). If they do test positive, they will be able to get Harvoni, and God knows I pray they test negative. Thanks for your input and I am glad everyone in your family is Hep C negative, those of us who do have it, also now have hope.
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I've told quite a few people. My family knows, my friends know, my staff know, the majority of my work colleagues know, my boss knows. I don't tell everyone, but it's not really a secret.
I think I am a good person and if people choose to disengage from me because of this it speaks more of them than it does of me.
This pretty much describes me. I don't keep my HCV a secret. Everybody knows I have HCV. I told all the people in my bike group that if I have a wreck, be careful because my blood is toxic. Every once in a while I tell someone and they respond they have HCV too. That happened to me about a month ago in a business meeting.
Philly you are so right about people that disengage. Telling our secret serves as an idiot detector.
Bob
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ignorance, people are ignorant. And those same people may very well have Hep themselves. I think I was waiting for the right moment, and it is here.
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Most people I know at all well know. I work in a machine shop and sometimes things happen and we get cut and bleed so I let my coworkers know.
I feel the best way to battle ignorance is with truth. Not advice for everyone just do what works for you :)
I remember hearing that even with cancer when you tell someone there is a tendency to recoil a bit. I think it is something built into the human animal if we see a sick animal we stay away basic part of our brains at work.
Also by being open I have friends refer other friends to me when they are newly diagnosed good to have someone to talk to when you get a new diagnosis of hep c.
Best to all
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To each his own, there's no right or wrong way of dealing with whether to tell others or not. I chose not to broadcast it, since I contracted Hep C as a teen junkie. That's not information many people know. I'm not ashamed of it, but most people aren't ready to hear that, it's pretty far outside of most people's understanding. I'm proud to know I was strong enough to kick heroin. I ended up with Hep C and all its attendant problems, but I've dealt with it, I've maintained a good marriage and raised great kids, I made it through college (not easy at the time, given the incessant panic attacks) and progressed to a high management position. But my health is my business--hard enough to protect that privacy in this day and age. I am open here about it because I have anonymity.
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Atomic dog, I'm very proud of you for kicking that addiction! I know that was a difficult battle. My husband fought with a cocaine addiction for years until it finally killed him. I know your wife and kids are glad to have you around.
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No one knows but my doctor, his nurses and my primary care physician, and my husband. So, I only told my husband. Can't keep secrets from him and also I wanted him to get tested - he is Hep C Free, thank God!
I can't tell anyone else because they won't understand, and will freak out, or judge me. It's sad.
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Unfortunately there is a stigma associated with Hep C, many dont understand what or how you contract it and in turen that is why so many dont even know they are + for it until something happens.
Ive had it since 1975 contarcted through a blood transfusion associated with a long hospital stay. Then it was called non A non B Hep and they did not do anything else. it was not until about 2000 when I tried to give blood that I was dx. Sine then Ive also waited for tx with a better cure rate and fewer side effects.
I told my wife immediately and had her tested since we had been married for 10 years at that time. Ive told my sons when they were old enough to understand so they could be safe and know to be careful if dad had blood-cut-etc. And as needed i tell anyone that might come in contact with my blood to be extra safe, dentist, hygienist, any lab workers and if I cut myself and there was someone else around Id warn them if needed. I dont want to announce it to everyone Im in contact with but I do want to be responsible and not endanger anyone.
Thankfully we have Harvoni now Im 17 days in and only 67 days to be rid of this!!!
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Atomic Dog, I lost friends to that drug. many moons ago. I know someone right now whose son is back in jail. he's been through rehab but succumbed once again to heroin, hurts my heart. To read what you did, and how you beat it, married, raised a family, successful in your rite, and now on your way to ridding your body of this horrible disease. getting rid of the hep, will be your next win.
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My personal opinion is that the longer you let things stay in shadows the greater stigma. Myself, I'm an open book. Throw up the blinds and let the stigma a fear whither in the light! Again, that's just me.
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Atomic Dog, I lost friends to that drug. many moons ago. I know someone right now whose son is back in jail. he's been through rehab but succumbed once again to heroin, hurts my heart. To read what you did, and how you beat it, married, raised a family, successful in your rite, and now on your way to ridding your body of this horrible disease. getting rid of the hep, will be your next win.
Thanks, bro, that warms my heart.
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My personal opinion is that the longer you let things stay in shadows the greater stigma. Myself, I'm an open book. Throw up the blinds and let the stigma a fear whither in the light! Again, that's just me.
I've had doctors sneer at me when I told them I contracted HCV as an addict--literally sneer. I had to fight tooth and nail with Kaiser to get Harvoni because the GI guy in charge had a similar attitude. The stigma is real and people are paying a price for this kind of bias by people in charge of their healthcare.
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I learned of my infection 10 years ago. I obviously informed my wife and our son, both tested negative. I did confide with 2 other close friends, but no one else. And that's the way I've kept it. I think if my employer knew about it, there would be negative consequences.
All of my Health Care Providers have been very supportive over the years. I want to give a shout out here the folks at CVS. Everyone I've spoken with there present themselves as top notch professionals. CVS has a RN check in with me every 2 weeks just to see how I'm doing. Great people there!
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I've had doctors sneer at me when I told them I contracted HCV as an addict--literally sneer. I had to fight tooth and nail with Kaiser to get Harvoni because the GI guy in charge had a similar attitude. The stigma is real and people are paying a price for this kind of bias by people in charge of their healthcare.
Atomic,
Your right about the stigma. I've known dozens and dozens of people with HCV and everyone one got it the same way. Almost all in the 60's or 70's. I think that's why most people either say they don't know or it was from a bad dentist etc etc. The fact is that most of them are good people and have good jobs. People change and youth do stupid things because of peer pressure and think they are invincible. Wishing you a speedy cure.
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Yesterday I started taking Harvoni. I will take it for 12 weeks. After being diagnosed in 2011 with Hep C, I just now started to tell my grown children. It was not easy, and I am so worried that one of them may also have Hep. I understand the odds of passing through childbirth are about 5 per cent. They will now go and be tested themselves in the coming weeks.
I am not sure if I should share this with friends. Due to the stigma attached.
Any thoughts out there? Thanks for listening.
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I understand your worry I have had this probably since my 20's. I'm 63 now and yes there is a stigma I tell no one at work except for a very few close friends. Many are phobic and I can do without the stress. My family knows and that's ok, tells those whom you feel comfortable with, it has nothing to do with shame. I'm ok with it I have lived with it and have excepted the fact that not everyone is open minded even in these times. It is unfortunate but while you are on treament you need to be stress free, so just play it out by ear. This is my second try and I am hoping my last. Hang in there you will be fine.
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thanks Ripples and welcome to the forum.
I wish you good luck with SVR second time around. I'm sure you will get that good news. May I ask what your are treating with this second time around, and for how long?