Loved Ones' Reactions

[eztagger]

How do I tell a family member (in my case, my grown daughter) that I have HCV (I just learned of it) when said family member is married to a controlling person who is afraid of catching anything from anyone. I'm very much afraid I will never see my daughter or my grandson again.

Has anyone else had this problem? If so, how did you deal with it?

Thanks for your consideration.

[Califia]

EZ,   my first practical question is where are you?  If you are already referred to a liver specialist & have an appointment pending very soon, I would say you have good conventional medical resources.  But are they enough?   The dilemna for liver disease people in general, not just those with Hep-C,  is that the patient has to be in charge AND has to have access to the best resources (minds).   Liver disease is serious and expensive to treat and in an early stage of research.  It is looked at and approached moralistically in many quarters, which has slowed down the science.   Bush administration support for stopping the HCV pandemic and the suffering of millions?  Not bloody likely, I say, but I would love to be surprised.   So medical treatment right now is  a very mixed bag.   If you have Hep-C there's 75% **** floating around out there,  whether conventional or alternative.  Now I know you already figured that out.  You've read enough, looked at the odds overall and said, treatment's not worth it.   In your case maybe that's true, but maybe not.   You need well-trained eyes to  look you over medically.   How's your personal physician?   HCV will ferret out any weakness in your system and gnaw a  hole through it.  Its street name is "the Dragon" and everybody knows you can't turn your back on one.   You're in crisis now, woman.   And you get to decide whether you're worth it, not anyone else.

Anna is so right.  Nobody can go through this for you or even with you as profoundly as you do.   The anger  you're feeling about  your ex and this last gift from him is that old primal anger that you can't ever rely on him or anyone else for protection, especially at times like this.   But try to pass through this anger and blame stage quickly, or just keep in mind that it's a phase.  Ultimately it doesn't matter how you got it, you know.  It's how you live with it.  Can you protect  and nourish yourself the way you would your own child?      

BTW, I'm at 6 months of treatment, looking at 18 months.  Beat up, but sane, thank you very much.   Diagnosed with this disease in 1990.  Done a lot of thinking about it.  Have never turned my back on it.

And yes, we hear you.  You do have a community.      

[cuteus]

maybe you do NOT have hcv, if the only test done was for antibodies, that will always come back positive, even if you cleared the virus. Have they done a viral load? that is the only way to know whether your body got rid of the virus on its own. then if you have no viral load, you are not lying when you say that you are not infected with hcv.

[cuteus]

maybe you do NOT have hcv, if the only test done was for antibodies, that will always come back positive, even if you cleared the virus. Have they done a viral load? that is the only way to know whether your body got rid of the virus on its own. then if you have no viral load, you are not lying when you say that you are not infected with hcv7

[eztagger]

Thanks, annainitaly, for your thoughtfulness and words. Daughter asked this morning if maybe I should get ANOTHER testing to ensure I really don't have HCV. I heard her husband's words coming from her mouth.

I told her the first testing was a false positive, the second testing was negative and I'm sticking to that dishonest story.

[annainitaly]

You don

[the witness]

This is personal decision that only you can make. When my husband found out he had Hep C we began our search to find out all we could about it. It was not until a year later that he wanted to start treatment and tell who he felt needed to know. I think if we told "everyone" right from the beginning without us knowing what we had learned throughout the year, we would not have been able to explain to our frieds, family, etc how it is spread and what could happen to him if he did not seek treatment. His co workers, friends and our church family all have continued to support him and his decision to start treatment. (He is currently on week 14 of peginterfon/ribavarin) He told his older brother and his family, very understanding and supporting. Told his older sister and she was devastated and told him do not tell her three daughters (all of whom are over 20) His sis was afraid that her daughters would not want their children to be around their uncle. What a misfortune. I agree with many of the previous threads. Education is the key to this. If we had not, and we still do, learn all that we can about this we would not have been prepared to tell anyone. I am married to this man and have never once thought that I could "catch it" from him. We never gave it a second thought when we told our three children. We have a 7 yr old grandson and 4 year old granddaughter and have not ever been told that grandpa could not see them. We do not know how my husband contracted this, and the doctor told us he has probably had it for 20 plus years. It doesn't matter. He did not ask to get it, he did nothing wrong to have had this happen to him either. Once you accept or come to grips with the dx you learn, research and find out all that you can about it. Once you yourself are ready tell who you want to tell. Let them also come to grips with it. Remeber you had to. I will close with this, we have found that we are now surrounded by a group of people who are genuinely concerned and pray for complete healing for my husband. I know that this would not have happened had we chosen not to tell anyone. Ultimately the decision is yours. Pray for guidance and acceptance by those you love. May God truly bless you and your family in the days ahead.

[eztagger]

Wow! Thanks for all of your comments. I'm very glad I found this forum because people here are opinionated (a good attribute, IMO) and are not afraid to verbalize their thoughts. This is very refreshing!!

Before I go any further, y'all please take a look at the following site:

http://www.hcvets.com/

A little about me: I am a 62 year-old woman who, until I donated blood a few weeks ago, thought I was made of steel and invulnerable. The letter from the blood center quickly made me a pool of weakness, during which time I informed my daughter in an almost hysterical way. I begged her to promise not to tell anyone but she, as I stated previously, allows control by her husband. She, btw, is in a weakened state due to bouts of clinical depression (probably caused by her controlling father, whom I divorced in 1990, because of said control freakiness and by her controlling husband). Therefore, I should have never told her.

Anyway... I am an "at risk" person due to receiving two units of blood in the mid 60's when I almost died from loss of blood during a stillbirth. Later, in 1992 and in 1997, respectively, I had two tattoos placed on my person by reputable artists, and since 1990, have had more than one sexual partner. I have been celebate (my choice) since 1999.

HOWEVER, after finding http://www.hcvets.com/ I realized that being married to a Viet Nam vet for 26 years is probably the real cause of my current condition. Since I hate the ignorant idiot, I will not ask him to be tested for HCV. He wouldn't anyway, even if I asked nicely because he is a Texas Mystique male.

Since I am 62 and since I feel wonderful, I don't plan on doing treatment; I don't care what the liver specialist (whom I have not seen yet) says. I don't care to live the probable, relatively few years I have left fighting side affects of meds. I don't like meds of any kind and am not on any for anything.

I've already begun taking steps to simplify my life so that I can continue being as independent as possible.

Again, thank you all and know that I will continue reading this forum. If any of you are interested and are open to differing life philosophies, please see my personal web site.

http://www.gloria-donniegarland.com/

[jonihs]

I just wanted to comment that tx. only takes from 6 months to a year and that there are not "years" of meds. I treated for 6 months, and 6 months after completing treatment(tx) I am hepatitis free. So are many others on this forum.

[Xenigma]

No, I would not tell them.
You are under no obligation to tell anyone except
for your doctors.  It's really no ones business but yours.
Until people become more educated about hepatitis
it's best to just not tell. Of course each person and each circumstance is different.  Telling will not change the course of the disease but it sounds like it will change your relationship with family. It will be "devastating" as you put.
You have enough on your plate right now...
Maybe in time you will be able to tell, but for now,
just take care of yourself.
Good luck
enigma

[eztagger]

Please see the site, http://www.hcvets.com/ Causes are not of a sexual nature.

[new-sojourn]

Oh for heaven sakes tell them, esp when you are on treatment.  It's a virus. i got it thru transfused blood products in 1967.  If you don't treat the virus, you'll continue to get worse, iller and I'm sure they will notice that.

This hep c is a virus, not the wrath of God.  Or just tell your daughter and let her make the decision to tell her husband.  Don't worry what he has to say.  Chances are he will just leave her later on anyway.  Those controll freaks do.

And I think its stupid to take a bunch of people to the doctors.  Take someone who is interested and can remember to ask the right questions and remember the answers later.

This is a progressive, chronic disease that ends in cirrhosis, coma, liver failure and death.  The only one that's sick, gonna suffer and die is you.  It's your recovery.  not your daughter's or his.  just yours.  so own it.

[britgirl]

I'm confused. I have looked at the site. I am not saying that your husband got it "sexually", but how on earth did you get it from him if not through sex? Am I missing something here?

[eztagger]

Thank you, christie2004, for your heartfelt thoughts. I am, indeed, concerned for my daughter and have been for several years. Please understand that her husband does not abuse her, either physically or emotionally, but he does manipulate her to the point that he could cause my never seeing my daughter or grandson again.

On that note, she came by today and asked me about the last testing and I told her the doctor had circled my cholesterol level but everything else was just fine; that the blood center's test resulted, apparently, in a false positive. I never knew I could lie so well but I'm glad I did after seeing the happy, relieved look on her beautiful face.

I even managed to continue my facade while she, my grandson and I went to Christmas on the Plaza in our little town.

Currently, I'm feeling pretty depressed. I guess because I feel so alone now. I know it will pass but I'm glad this forum is available. I'm sure I will need it after seeing the liver specialist next week and more testing is completed.

[honey1616]

Hi,,Welcome to the forum!  It is a tough choice at times to decide who to tell if any.  I chose only to tell a few as there were some that I knew wouldn't handle it well or be afraid of catching etc...Its too bad that some people choose to be ignorant or just wouldn't take the time to learn about a disease of a loved one.  This forum is great support and has gotten me through my treatment.  I'm glad you found us!

[eztagger]

I'm sorry. We've had a breakdown in communication - smile. According to the site referenced previously, the Viet Nam vets contracted HCV through unsanitary use of medical supplies, etc.

According to all of the sites I've researched discussing HCV, sexual relations is not a very friendly vehicle for transmission. But, there are a miriad of ways I could have gotten the disease from the ex husband while living intimately with him for 26 years. Home first aid after accidents - he was very clumsy - comes to mind.

I emailed the webmaster of the vet site and she said she'd contracted HCV from her vet husband through shared razors.

[eztagger]

Thank you very much, honey15637, for the welcome. I needed that right now.

[britgirl]

I would think that you are much more likely to have contracted HCV from the two units of blood you received than from your former partner. Sexual transmission does happen, but it is comparatively rare.

[Christie2004]

It's crazy the amount of incorrect information that is out there, even among healthcare workers.

I made no secret among my nurse co-workers when my husband was first diagnosed, and during his subsequent treatments.  Everyone at work knew when I was tested, and everyone knew I was negative.

However, I once brought some cookies in to work, and overheard one nurse tell another not to eat them, that I had "probably not worn gloves" when putting them into the container to take to work!  And that perhaps my husband had touched them.

I would be very concerned about your daughter if she is married to such a controlling person.  She may be suffering in ways you are not aware.
But if you truly feel you would be cut out of her life, I see no reason she has to know anything else.  Tell her the tests are now "normal".  That's not a lie--they ARE normal results for someone who has been infected with hepC.  

I wish you the best.  Perhaps you can use this event as a way to approach her about what is going on in her life.  To remain married to someone who thinks like that and controls everything his wife does is a big huge red flag that something is wrong somewhere.

[cuteus]

i only told my older daughter because I decided to treat and did not know how the sides would affect me and my ability to care for her younger sister.  As long as you take universal precautions to prevent infecting them, I don't see why they need to know. I only told my parents this year, almost a year into treatment. I did not see the need to worry them.

[eztagger]

Commenters - I wish it were that simple (i.e. to educate). The person about whom I speak, even though intelligent, is extremely superstitious. For example; if he sees a pet dog move his bowels, he thinks he will get a sty. This is not a joke.

My daughter, even though highly intelligent and understands the ramifications of the disease, has a husband who is controlling of her attention and time and she allows it. My daughter knows of the first positive testing and told her husband (unfortunately). But, I was retested Tuesday by my personal physician and I have not yet told her that again, the test result was positive.

I think I have just answered my own question. I will lie to her and tell her the last test was negative. I'm usually an honest person but the emotional problems that all of us will experience if they know the truth will be devastating to my daughter and to me.

Thank you for your comments.

[Tony-z]

You may want to have them go to the Dr with you so that all the question can be addressed by a professional.

               God Bless


                   TonyZ