Hep C Discussion Forum

Loopy Lisa · Guru

RE: What to tell people??

Dillo · Senior Member

I have been open about it to family. Some (my ex) did not want me telling some of her family for her own reasons...which I respected. My family hasn't really said a lot about it but my daughters and others have been supportive. I have told a few other friends and have even had one close friend tell me he was exposed to it 15 years ago. He did not say how he knew but he didn't to want to be re-tested to see if he still did had it because "they will always find something wrong". His choice. I would rather know. I have told any medical professional I had to see for treatment that I have it. I feel they need to know. That has been greeted by mixed responses, good ones and bad ones.

Everyone else is on a need to know basis especially at work.

I feel like it is a choice each of us have to make on our own and I respect everyones choices.

Tig · Admin

Kellie wrote:
I know it's totally a personal decision what to tell folks. I believe though, that the more people continue to hide it, the longer the stigma will continue. What would have happened if the folks with HIV had kept quiet?

Kellie, I asked my nephew about this, he has it and he had a quick response to it. He said, "The reason we couldn't keep quiet when it was first discovered and diagnosed was because there weren't any treatments available and we were quickly dying by the thousands. It was impossible to keep it quiet." I remember those days and I recall him telling me that he wished nobody knew about his disease, because people treated him differently, treated him like a leper. They didn't realize the difference between HIV and AIDS then. Many with HIV today prefer to keep that part of their life quiet and I've witnessed why. Stigma can destroy. Our disease takes decades to progress and may never progress to anything. I continue to believe that your business is your business and nobody else's. If you choose to reveal your personal health issues to anyone, you make that choice knowing it is now (potentially) in the public arena. I support everyone's right to choose, but they make that choice knowing they can't un-ring the bell, that's all I'm saying.

Karen · Senior Member

From day one...I have been an open book about my illness. I was very transparent for some of the same reasons that Tig56"s nephew and Kellie stated. What I have found...most people had no clue therefore, treated me no different. In fact, many times when I was struggling I had to remind people I was having a bad day due to Hep C, that I needed a break. I sometimes still do.

The other day I was thinking about how others see people with Hep C and those going through treatment. For me it has been comparable to a person who has been verbally abused by an other. Because there are no obvious bruises, black eyes or broken bones-it is much harder for some to understand what I am going through. With newer treatments our hair is not falling out, we do not have an IV bag of poison going through are veins, and we can still function to some degree. Because Hep C is silent (sort of) and the side effects of treatment are not always visible, many have treated me like someone who just got over a round of antibiotics for a sinus infection. To be honest, sometimes I am the one that is hardest to convince otherwise. It made we start to wonder how do we change this image and "lovely" demand the respect from others, including ourselves.

Whether you choose to share or be silent...I believe people see what they want to see-it is all based on their own fears and ability to handle what is in front of them. My guess, we will need to continue to be the warriors of this illness for a long time to come.

-- Edited by Karen on Monday 7th of October 2013 03:17:52 PM

Kellie · Senior Member

I know it's totally a personal decision what to tell folks. I believe though, that the more people continue to hide it, the longer the stigma will continue. What would have happened if the folks with HIV had kept quiet?

Considering the fact that 5 to 6 million people have it in the U.S. and don't know it, I think it's important to get the word out there and take the surprise/shock factor out of it. In the end the silence will kill people that have this disease because of the "secretiveness" factor and will maybe keep them from being tested and also treated. Just sayin - - -

We are on the front lines of a new day for this disease and I'm willing to speak about my experience in hopes of changing the attitudes even if people say things behind my back and I'm painted in a not so favorable light. If it helps someone else not have to go through the emotional pain, disappointment and exclusion that I've been through, then wonderful. It's worth it. Hiding it no more...I do understand I have an advantage in the U.S. as in other countries, like Do said, the stigma is worse. But we have to start somewhere, with one person, taking one action.....

Great topic. Thanks for everybody's opinion. I'm open to it all.

hrsetrdr · Guru

Matt Chris wrote:
ios9 wrote:
So, the best is too keep discret, your life is yours, you do not have to share your secrets with others, except may be your husband.
Do, your word "discrete" I think this is a good approach. Being careful to whom you inform Is very wise, most people whether their friends, family or others do not have any insight on HCV so we cannot expect them to understand correctly. If they truly have a loving attitude toward you then that might allow you to explain about HCV.
Best course is to choose wisely whom you inform.
Matt

+1 this is it, in a nutshell. IMO, the less co-workers and and casual acquaintances know about your condition, the less they have to talk about. I personally decided that I just didn't care what anyone thought, but I was still 'discrete'. I did tell my immediate supervisor at work, was surprised to hear that his daughter had HCV ; was actually surprised by his candidness as well.

Matt Chris · Guru

ios9 wrote:
So, the best is too keep discret, your life is yours, you do not have to share your secrets with others, except may be your husband.

Do, your word "discrete" I think this is a good approach. Being careful to whom you inform Is very wise, most people whether their friends, family or others do not have any insight on HCV so we cannot expect them to understand correctly. If they truly have a loving attitude toward you then that might allow you to explain about HCV.

Best course is to choose wisely whom you inform.

Matt

ios9 · Senior Member

You'r right Terry !

The other day, I wrote on Facebook a private message to a lady I do not know physically but we do speek openly by phone from time to time (she breeds Peterbald cats) she wanted to know how I was going after the lost of my little pet a year ago. Then I told her the truth, then...she said she has hepatitis B and has been taking Ribavirine for two years but never told any body excepted her husband ! just unbeleivable. And she asked me lot of questions, I could understand she has been feeling all alone all this time.

Any way : I 'm not that sure it's good to tell people you have been a drugaddict, because they might not react well, not every body has a strong mind to take this gently. As Malcom said, there is still a stigma with HVC. Here in France, when one met an hepato for the first time after one has been detected positive , you are first ask :

- do you takes drugs ?

- do you drink ?

- did you have a blood transfusion ? and that question comes the last. It shows even the medical corporation feels if you have HVC must be first because you'r acting wrongly.

So, the best is too keep discret, your life is yours, you do not have to share your secrets with others, except may be your husband. By the way : my ex husband does not know I am ill, my children did not tell him, and I feel it's better that way by now.

Cheers

Do

Terry · Senior Member

If you look at most of the people on here a lot got it from different sources. So how you got it is your business and you don't need to share that unless you want to. Some over inquiring minds one time were asking me about how you could end up getting this and when

I explained that up until 1992 they didn't even have a way to test for it and if you were given blood for some reason you could have got the virus. Well after that conversation it looked like they all wanted to go out and get tested..lol Since I told a few friends that I had it almost every week I have been asked to send out information because they have a friend or family member with it. So more then you think have it and just keep it quiet. Good Luck !

Loopy Lisa · Guru

I have to say that telling people that matter is liberating. I feel I don't have to shoulder all the worry alone. I admire people people that make a mistake, take responsibility and change it around. You are not an action, you are you, and if people love you they still will warts and all. x

TeddyTrout · Senior Member

The very best thing that happened to you is that you lived to love life for another day. I'm sure that should you finish this treatment you would never consider doing hard drugs ever again, regardless how bad things seem to get you down. You will never ever want to go back on this treatment again. Good luck and may the gods bless you.

HilLaryOus · Member

You know I actually told a main boss at my work too, I kinda had to so she could approve my part time schedule and she told me her husband went thru recent treatment and she did treatment on just the interferon like 20 years ago! She was recently told it came back and she needs the triple therapy too! But I just felt so relieved that this person I Had to tell could completely understand- I needed that. I haven't really had anyone that understood before that- and now I have this forum so it's a great feeling to not be a black sheep! I still feel weird with people that don't know- like my boyfriends family or daughter. But my family all knows bc they were there for me in my darkest time and helped me and they are all supportive so it's a great feeling. And I've kinda realized people that don't know just don't have to?! I may stick with the liver or kidney issue.

The issue with my boyfriends parents is that they know about drugs and his father lost several of his brothers to heroin use. And even now it affects a nephew of his parents and they of course know about hep c. I don't want them to worry I'd relapse or give it to their son or granddaughter- they think highly of me and I'm worried what theyd think if they knew my past. His dad used and has been clean for over 20 years but I just dont know if I should tell them. We talk about marriage and kids and our future so we are very serious. I just hate feeling like I have this secret monkey on my back- like I said it feels similar to how it is when your hiding a drug problem. I'd rather it was totally out in the open but obviously people have judgments or don't know enough about the disease or me. So maybe the me they do know now is all that matters? I'm not sure- I'm so back and fourth. And now I'm rambling.. Lol. confuse

KLG · Veteran Member

Hi Hillary, If I don't feel comfortable telling someone I am in treatment for hep c, I just tell them it's for liver disease. That way you are still telling the truth. Sometimes people will ask more detailed questions and then I say I am not comfortable talking about it or words to that effect. I kept it private at work although I told a few. It is interesting though that I've since discovered others at my office have gone through the same treatment

Tig · Admin

This topic was discussed this week in a separate thread and if you haven't read it i think you would benefit from the information. I'll repost it here:

This is an article previously shared on these pages and deals with the "stigma" we seem to be discussing. It's a well written article and points out the different yet identical concerns we all share.

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Stigma%20Guide.pdf

mallani · Guru

Hi Hillary,

This is often discussed. If you use the Search button, you will find what Members have said previously. As always, it's an individual decision. Here on the Forum, we don't care how it's acquired. As you have found out, there is a stigma attached to HCV, and even the Medical Profession often show marked bias and ignorance. Most people are very selective in talking about HCV and Rx. You need to be open and frank with your bf, but why tell his family? Hopefully your Sx will be minimal so work will not be a problem. Personally, I didn't care what people thought, and I really didn't have problems with stigma. Others have had different experiences and will probably share them with you. It's a difficult subject and really up to you. Good luck.

JoAnneh · Guru

Hilliary,
I discovered I had HCV at 32!
I found some people were scared
And it devastated me!
I felt like a leper!
At 53, I could personally care less what
People think! I even decided to be open
About past drug use and having this disease
To many people.
I am a hair dresser and at 32 I was scared
I would loose clients, at 53 I didn't care
If I lost clients. I had clients cry as they
We're sad I had to go thru treatment.

I never lost a client!
You are young and rejection is tough at your
Age. If your BF family loves you, I feel they
Will give you a lot of support. You don't have
To say how you got it...it's up to you!
I have been sober since age 27!
It's between you and your BF.
It isn't anyone business anyway,
Some people honestly don't know
How they got it. You will be off treatment soon
Anyway. Follow your heart

-- Edited by JoAnneh on Saturday 21st of September 2013 03:42:49 PM

HilLaryOus · Member

Hey everyone! My name is Hillary, I'm very new to treatment just had my 3rd shot today and I'm on the triple drug treatment with Victrelis(boceprevir). So far things are better than expected But my hugest dilemma is what to tell people I'm going thru? I'm not sure if most people get hep c the way I did.. Got mixed up with the wrong crowd and use iv drugs. Not a crowd actually it was my serious bf but anyways that's all over I've been clean over a year and a half and could never even imagine looking back. That said tho- I have this new boyfriend now that's absolutely amazing it's been 8 months and seems to me like he's really here for me. So I've foundered and more recently that people really judge me when they know my past. Or even a gyno made me feel horrible when I asked about contraception while on treatment- I'm 24 and he told me to take permanent measures and tie my tubes! I want children I want to be healthy for them, so that dr made me feel so horrible. So I'm not so open about what I've been thru anymore and just wonder what others tell people that they're going thru? My boyfriends entire family doesn't know any of my past. They adore me and I'm scared of changing their opinions of me? Do I tell people some of the truth or all of it? I'm scare to lie and get caught in a lie? If people visit I don't think I should have to hide my medication or paperwork or shots in the fridge bc this is my home but I jut don't know what to tell people? Friends or family- anyone been thru these feelings? It causes a lot of anxiety for me:( all input is so appreciated!

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