Who do you tell?

[sunflowersmakemesmile]

How many people know in your life? Do you just tell those close to you, those potentially exposed to the risk? Since its not contagious some dont feel like telling anyone they dont absolutely have to tell. Who have you decided to tell?

[RobertBeWell]

Unless they have a chance of getting into my blood, absolutely no one.

[ClippedWings]

I personally elected to tell anyone who asked.  All my friends, family, co-workers, subordinates and supervisors know.  My position was that this disease is shrouded in a cloud of ignorance and only by educating people will we be able to get Hep C the attention it deserves as a killer of tens of thousands of people a year.  A large number of people infected don't know how they got it.  People my age (I'm 48) were exposed to numerous medical procedures and practices that could have led to the development of the disease.  Like I tell everyone even the addict who contracted the disease from dirty needles was not likely looking to die, he or she was trying to get high and shouldn't pay the ultimate price for that.  What about the people infected at the large endoscopy clinics around the country?  There is no need to be ashamed or embarrassed by testing positive.  It happens and thankfully since 1990 the blood supply is clean and the rate of infection has slowed down to fraction of what it was pre-1989.
  As for me, I didn't find out I had Hep C until I was already symptomatic with cirrhosis of the liver in 2007.  I was unsuccessful at clearing the virus with Interferon and Ribavirin and my condition steadily decayed.  By January of this year I was in and out of the hospital with bouts of Hepatic Encephalopathy, Hyponatrimia, and even an episode of bleeding esophageal varicies.  Fortunately I received a great gift in the form of a new liver in July and I am feeling better than I have in years.  I have been an infrequent poster to these boards over the past three years but have been a continual lurker and I learned much from the people here.  If anyone ever has any questions on End Stage Liver Disease and the transplant process from a patient perspective, drop me a line.  I have spent 20+ hours a week since 2007 studying everything I could get my hands on with regard to liver disease and I highly encourage all newly diagnosed people to educate themselves on the progression and treatment of this disease.  You expect the general public to be ignorant about a disease like Hepatitis C.  What will amaze you is how little most doctors know about the liver and liver disease.  Like most on this site I recommend, dump your family doc and get a Hepatologist or Hep C experienced gastroenterologist.

Bill  

[Kristina538]

Way back in 1991 my specialist said to tell no-one.  It was good advise, but I did tell my brother and my cousin.... it couldn't help but alter my relationships with them, although they have both been very supportive.  And, of course, I told my current partner when I met him in 1995, and my son before I went on tx in 2008.
I kept it, especially, from my bank and my work collegues.   I'm the type of person who would've read it into any interraction i was having with them, and didn't want my bank to think I was suddenly getting sick (especially with my good credit rating :-).  It's worked for me, but wasn't always easy.

[pj1881]

I randomly tell people.. Im not ashamed... What are they gonna do? Stop eating my lunch?? Pride... I am who I am... Maybe we can help inform the world of our disease so that people will know how much of an epidemic it has become...

[adamben101]

I told my last 3 girlfriends so they could get tested (all negative).  They are very supportive and wouldn't tell others.  I told 3 of my closest friends just to have someone to talk to and take me to certain appointments if necessary.  For now, my family doesn't know.  They live far away and telling them would just make them worry.  They couldn't help me so why bother them?  I may tell my mom and sister this month.  The way I look at it, I already try to see them and dote on them as much as I can, and I'm taking all the necessary steps to confront and treat this disease.  They wouldn't be helping me do any more than I'm doing now.

[tjrusert]

I started out just telling my family and coworkers.  I felt like they needed to know if I started missing work because I felt bad.  They were very supportive.  In fact, I have to remind them that I have hepC periodically.  My husband is a Minister.  So I had to decide if I would tell the members of our church.  Eventually, my husband did tell ppl because while I was taking my tx, I didnt feel like going to Church as often or to church related functions.  The church has been very supportive too.  I have truly been blessed.  One day the church ladies group came by and gave me one of there hand made quilts.  But I also understand that not all ppl react this way, so I would be very careful not to tell anyone that you dont trust completely or you dont have a good reason to tell.  I got so sick on tx that there was no denying that something was wrong.  The church has to trust my husband with their darkest secrets so I guess they appreciated the fact that we would share this with them.

[jazzy578]

I was diagnoised 12/08 and at first I told only my immmediate family.  Then a year later, when I knew I was getting ready for treatment, I told my aids (I am a special ed teacher) and one of them told me not to tell anyone else because her sister had disclosed her Hep C and most of their family pushed her aside in fear.  So, when I went out on a leave of absence from work, I did not disclose, but since then, I have had a very rough time with sx and after now doing shot 23/48, I  am so over what anyone thinks and I have told everyone.  Suprisingly, I have had no one speak or act negatively toward me at all.  Everyone has been very supportive and understanding.  I too, live in a town of approx. 40,000, which I think is fairly small to where everyone knows someone who knows someone, if you know what I mean.  People all still treat me the same as they did before and all wish me well.

I think where the conflict can come in is when people ask, "How did you get that?"  I tell them the list of how you can get it, blood transfusions, tattoos, drug use, poor sanitation back in the 50's & 60's in health care, then go on to  tell them that a % of people don't really know how they got it for sure. Then I break into the different types of Hep C and the cure rates and try to  give them a quick education to  satisify their curiosity.  Then I tell them  which one I have and how long I need to treat and my outcome stats. and everyone is statisfied.  That takes about 2 minutes and we are done.  

Now, imagine if my answer was, "Well I lived in SF in the late 60's, early 70's and shot drugs."  I don't think most people would  respond the same towards me or my illness.  It is all in the packaging, sort of like how our politicians do each time they give a speech.  Most people do not what to  hear that our economy is in trouble to where we may be headed for the most severe depression since 1930.  They want it sugar coated.  You're not out and out lying, only not disclosing all the facts.  And as one poster said, whose business is it anyway??

Take care,

jaz

[portann]

I've recently tried telling a few times, post-tx and SVR, thinking I could get it to work with the right approach,  getting the tone just right, acting matter-of-fact.

It's just never worked for me so far. Maybe it's the kind of people I tell but noone wants to hear about it or talk about it or think about it but then they remember that I had it and wonder if I still have it and how that affects them in terms of risk.

Anyway, it's plain easier for me to not tell,  if that makes sense, and thank goodness I only told on a need-to-know basis when I actually had HCV.


Some people tell all and it works for them but so far it hasn't for me. Even my kids are not comfy discussing it. My hubby is the only one I know who never had it who is entirely at ease with the topic.

[Anne1717]

I was terrified when I recently found out I had Hep C. After I am the "good girl"  with no compromising or addictive habits, or a past that would have made me at risk for HCV. Further more, I am 52 years old and know precisely a time frame for infection and KNOW that nothing happened in those particular 6 months that would have compromised my body. No one in my circle would understand that I have this disease.

Having said that, yes, I too thought that HCV was specifically a disease resulting from injection drug use and initially felt ashamed and embarrassed. So,  now I am ashamed and embarrassed to have had those feelings. I would walk into a store or go to a movie and was sure everyone knew or if they knew they would be disgusted with me.

So why does the "good girl" have it and how do I tell ANYONE?  Especially my group of the "perfect people."  

WHO can I tell?  Well, of course I told my family and closest friends who know my habits very well and whose support I will need should I have to treat.  And that is it. Those will be the only people I tell and not because of embarrassment.  My question to myself was, if it were cancer or diabetes, who would I tell?  It was those same people - and no one else.  What purpose would it serve?

My motives for telling anyone else would have been questionable.  Did I want sympathy?  Commiseration? Perpetuation of a drama?

So,  I only told those I love, those who would need and have needed me.  And now I need them.
That is how I came to that answer - it was about motives and who NEEDS to know and who SHOULD know

[working dog]

i don't hold back at all...i'm in a small town and will be looking for support while treating..looking back maybe it would have been easier hiding it...the stigma is a drag..i think at least i hope in the long run keeping open about my hep will pay off...i also have 7 kids and didn't want them to see me cover anything up...good luck...billy

[alb572]

Besides my brother I have told a couple of good (at least I consider them that) friends, and one person at work. Those are the people I though I could trust. All of them tried and still trying to help as much as possible. Hope it stays that way during Tx. Unless you endangering someone by not telling them of your diagnoses (dentist, GF/BF,..)It seems that you are the best judge in the decision of  question "To Tell, or Not to Tell"

[chuckles333]

I pretty well told all of my friends, co-workers and family. It's a pretty good way to separate the real friends from those that are not. I think "It's my problem. If others are closed minded or just bigoted against me because of stupidity or lack of knowledge...well too bad for them." I share a lot with people and i hope they share back. At work I dropped a lot of weight really quickly during my treatment and I would rather people know why than have them conjure up a bunch of false thoughts in their minds. If the truth is too much for them to accept, I don't care.

[copyman]

tell the least amount of people you can. unfortunately there is a stigma with HCV because of lack of knowledge about the disease.

i have said this before, if you do decide to disclose you will find out who your true friends are..... they will be the ones not backing up like you have the plague when talking face to face with them..

[tashka]

Nobody but medical professionals and our pastor, who is very trustworthy man, know about my husband's hepatitis.

I would second what Cindy says-be very careful who you tell. Remember that if you keep quiet about this issue, you can always change your mind and talk about it later. But once you said the words, you can not take them back. There is no risk for anyone around you. So you are not obligated to tell anybody.

What I especially resent is that if you disclose this information, you will be forever defined by this disease. People will talk about you as "this person with hepatitis C". And of course there is a stigma attached. For many people all hepatitis (A, B, or C) is the same stuff, and they think you can get it from eating at the same table or shaking hands. I think that information about diseases of any kind should be private and prefer not to share with others unless absolutely necessary.

[stalion]

hi ,i have told many people, i was a hairstylist for 30 years i may have exposed some people during that period, i hope not but i also live in a small town everyone knows everyones business. i really donot care what people think, i no longer do hair via a serious back injury 3 years ago. i am more concerned telling health professionals, they seem to pass jugdement more than everyday people. if i had known i had this disease i would have found some other line of work that didnot include using sharp immplements! my main concern is noone else has to go though what we are,or have gone through. stalion

[EyesofBlue55]

The only people that know for me is my immediate family and health care professionals..My boss doesnt know-my best friend doesnt know(not now anyway)I work with a bunch of gossipy people and also live in a small town.They would have a field day with me!!!Be careful who you tell for now.If you need to vent,we are here for you!!!Also if you tell you might not want anybody asking you questions(my case anyway)Who needs  to know anyway???Its up to you -just my opinion. cindy

[Trinity4]

:o)

[FlGuy]

My wife knows.  My dogs know. I hope I can trust the bicth.

[Trinity4]

If it's relevant to the situation such as medical procedures, then I disclose.  Only my immediate family knows I have hepc.  I'm married so that conversation never had to come up.  I think if you choose to become sexually active with someone they need to to be aware you have hepc.  People in long term committed relationships are not advised to change any of their sexual practices.

It's really not any one's business otherwise.

Trinity