Who do we tell?/Why/Why not/Reactions

[Lucky Lou]

I was diagnosed about one month ago. Since then I have only allowed three people to know I am HEPC positive. My SO, my closet friend, and my sister. I have not started Tx. My question is this: Who did you tell and why? Who did you not tell and why? To go further, when you started TX, I suppose you found it necessary to inform more people. Who and why? What was the reasoning behind your decisions? Also, what kind of reaction can I expect from others? What kind of reactions did you experiance?I am sure between everyone here almost every reaction has been covered. I believe this will be extremely helpful to know what you guys did and why, and what occurred after.

LOU

[britgirl]

"noches" are feminine, not masculine! (Tenga una buena noche) Where did you learn your Spanish??? (LOL)

[Astrolady]

Ahhh Prometheus, we should all be so lucky to have our liver grow back.  Who to tell??  I haven't started TX yet I'm going to tell my kids 18 & 22 because they need to be tested, however I'm not sure I'm going to tell them how I acquired it.  As far as co-workers and supervisors I am going to pass, because I'm in a hostile situation with my immediate supervisor and I'm looking for a new job with good benefits.  I'm hoping the SX won't be that bad, 24 weeks with my Genotype.  I'll play it by ear, maybe I won't have to tell my new employer.  I really don't want to subject my self to any unnecessary judgment and ridicule

[Ella Mackenzie]

Well I 've known I have had it for 11 years now. In the beginning, I told only those close to me, friends and some family members. I also told all doctors, facialists and my dentist.  I live in San Francisco and many people talk openly about HCV and HIV because of how badly we were hit with the AIDS crisis in the 80s., well and now.  I have had several rommmates and have told them all. Not one responeded with fear or disgust. I think its important to tell them because i don't want them to accidendtly, without thought, use a razor or tweezer of mine. I have some family members I don't tell because I just don't want them to know.

When my boyfriend, (who has hepc) and I split up, I  began dating again, At a certain point, it would have to come out. I have tons of pamphlets, etc but kind of ruins the moment!!! That has been an entirely differnet story for me and contributed to my decision to do treatment. Lots of men were very interested until they found out about the hep c. It is interesting because I have several male friends who have it and are dating like crazy and the woman they meet don't give a damn about it. Could it be that woman are more understanding?? The comes purely from my own  anecdotal studies but I have seen it over and over.  I had several rotten and very hurtful experiences. So I stopped dating.

When I went on treatment, I told my immediate boss but there is no way I would tell any of my other co-workers.  But so many people out side of work know and it is great because some have it and others have friends or family members who are positive and  many are watching me go through treatment, curious for thier own possible recovery and I am happy to talk to anyone about it who asks.

[Petey7]

This is week 44 for me and no one except my wife and several medical people know of my HCV. This is not because I dont have more people I COULD tell but quite the opposite. I am part of a huge extended family and I am not the type of person who wants hundreds of people knowing my business or more especially TALKING about my business. To each his own I guess. Best wishes to all.

[nolee]

I elected to tell everyone I could (that I thought could handle the info)to educate others and bring this disease to the forefront. When HIV first came out, there was more info and news on the cause than the disease itself. I personally believe this slowed down the research due to moral and political implications of speaking out for a cure thus delaying the dollars from coming in. I find this also true with this disease but in a more Corporate setting than political. Face it the longer we go without a cure, the more $ is made. Until politics gets heavily involved with this issue, I'm afraid Corp. America will do what it does best; make $$$. That is why a grassroots effort must be launched to put the pressure on Politicians who in turn can allocate bucks for research. Afterall, we don't have an actual cure yet but only a chance for a chemical remission. That is why I personally decided to tell almost anyone who would listen.

[Califia]

No one has ever been judgemental or overtly hostile.  It's been more a case of trivializing of what I've just shared with them, and this is due not only to total ignorance about Hep-C and the real devastation it causes, but about chronic illness in general, I think.   Unless people have been dealing with something comparable, they just don't get it.   And in this culture we like to sweep illness under the rug.  If you can't compete like a honcho in the big rat race, then you just cease to exist.

People have had a hard time getting that I get tired, or weak--very much like silvermoon described the other day.   But I'm very self-protective, especially right now, and part of self-protection can be telling people what's going on.   My first week of treatment (yuk!) I was in the subway and this total idiot lit up a cigarette next to me.  Of course this set off a wave of terrible nausea.  Suddenly I heard my voice ripping out of my chest.  "Hey!   I'm on chemo and that smoke is making me sick to my stomach.  Thanks a lot!"   I was like a mother bear defending her own cub.  The guy snuffed out his cigarette and apologized, and then disappeared as fast as he could.

[Califia]

Nolee, you put this in exactly the right political perspective and said it so well.  Thank you.

New-sojourn, you've been through so much.  I am truly sorry for your loss.

[new-sojourn]

I'm amazed @the # of people who know someone or are related to someone w/hep c.  I've learned alot and almost always have had a poitive reaction.  I often start by saying I have a blood disease requiring chemo-which is what it is-and decide from there.

My stepbro's 1st wife died of hep c waiting for a transplant-and they're the rednecks!  So, you may be amazed @ the # of people you will find who have experience w/hep c.

I don't tell the paperboy or the box boy or the mailman-no he know something from all the bills and meds being shipped.  I do tell my hairdresser, dentist office, leg waxer-any one I use for Personal services, in case they would have qualms. Usually, I'm overrun w/q's.

Also, I use it for an excuse to get out of things I really don't want to do.  Makin' the hep c work for me for a change!

[derail]

I told everyone and anyone  It behooves us to educate the moronic moral minority The only real way to beat this scourge to the ground is by informing the JOHN.Q PUBLIC bandwagon and to hell with their misconcieved ideas about who gets hcv and how.****, the virus is like a plague ready to emerge at any time. secrecy is our worst enemy re.hcv and I hammer the point home. those morons who back away when they hear the bad word Hep.c I really like to rattle and tell them it's too late cause iwas in the same room and now they gonna get it and make sure to turn 3 times around clockwise before you use toilet or you can get the new strain.
when their jaw hits the floor and I wet my pants laughing they finally clue in a little.
BTW I always have printed info sheets that dispel some of the myths and tell them to Read  or they might catch it on the bus

and if it pi**es someone off too bad. and if they have a bro' screw them too

[britgirl]

Why should it matter how you got it? You say that we should say "contaminated blood products" if we got it through IV drug use, but I disagree. While I am not PROUD of what I did in my twenties, it is a part of me and I don't see why doctors, nurses, friends and family should not know. Employers are a bit different, I agree, especially if you work in education, as I do, but basically we will never change people's prejudices towrds drugs and drug users if we all lie.

[Fubarcat]

I had originally decided only to tell my immediate family and one or two friends.  I did not want to tell anyone at work.  However, I ended up having to tell our office administrator as the work I do is billed hourly and I was not billing the amount of hours that I usually do and it was quite noticeable.  When I finally told him, he was very sympathetic and advised his daughter also had Hep C.  My immediate boss also knows and she has been very supportive.  I have been allowed to keep my own hours and they have been extremely generous regarding various absences.  So, I lucked out there.  

After being on this Forum for a while, I started to agree with some people and decided that I was not going to hide it.  I started to tell other people and so far, I haven't had anyone be ugly about it.  I don't go out of my way to announce it to the general public, but if I am in a situation where I believe someone needs to know about my disease, I will tell them and I am not the least bit ashamed.  Of course, everyone always asks "How did you get it?"  That used to bother me, but the fact of the matter is, I don't know for certain (although I have a pretty good clue).  So, I just tell them there are numerous ways of contracting the disease and I don't know which one applies to me.  

I think most people just don't know the long term consequences of the disease, or in fact, very much about the disease at all.  I think they think I will just take medicine and get better and then that will be that.  Quite frankly, if I didn't have it, I wouldn't know very much about it either!

[Califia]

Lying about past drug use seems to be the rule in the highest office of THIS land....  Hope your Mr. Blair is an exception!

[Lucky Lou]

This subject is something I have been thinking over like everyone does at this point I guess. In my sick mind I always ask

[Califia]

Aw, sweetie.   The bottom line for me is always stay within your comfort zone.  You're processing so much heavy stuff at the speed of light right now -- ya basta!   Maybe that's more than enough.  And when we're all on the SVR bus together we can plot the world's greatest public awareness campaign.   Until then,  just keeping body and soul together is a very big job.   What, we gotta run for Senate now, too?

[Lucky Lou]

Hello!
What were/are the reactions of the people you tell?
Lou

[Ella Mackenzie]

Yea I agree with Califa. We have so much to deal with just having the disease it is often too much to deal with others B****S****.
I think as time goes on and the longer we have it it is easier to figure out what works best for each of us personally, sometimes by trial and error.

The first couple of years were so difficult emotionally for me. Now it is different.
Good luck to you Lucky

[silvermoon]

When I was Dx,  in 2000, it was still rather new.. so my doc sent me to an infectious disease spec.  He was very informative as to exactly what hepC is and how is it different from the other heps.. I was in shock, devastated.. I read what I could find, didn't have a computer at the time..  after a couple weks of it setting in, I called my kids and told them they need to come over so we could talk.. I told them, told them what I knew.. they cried... I told a couple of close friends. and they asked questions, and told me to do what I had to do to get better.. Finding out explained alot of symptoms that had been ignored before!
In March this year,  I found out that another friend, who has a bad habit of opening her mouth without thinking.. had told some other people with whom I had worked.. acquaintances, NOT friends.. I found out becuase one of them made an ugly comment to me in front of a couple other people.  The conversation was about cooking and baking, which I happen to have a talent for, and people were asking me to start cooking meals and goodies to bring to the workplace as I had done a few times before.
This person looked at me and said that no one would buy food from me.. I asked why she would say that.. she said "because you have hepatitis and we might catch it from you in the food."
  Well,as it so happens, I have never cared for this peron, becuase of the type of mean-spirited person she is and how she treats everyone... and  that was the WRONG thing to say to me, especially THAT day!! ..so I set HER and everyone around who heard her, STRAIGHT in a NY minute! and told them that IF ANYONE had anything to say about me, or any questions,,they should come to ME, not spread malicious rumors, because it just made them look IGNORANT!.  
I have told a couple of guys with whom I had developed close friendships, nothing physical, but had the possibility of going that way.. I was straight up with them.. they had never heard of HepC.. I am amazed at how many people, intelligent, professional people, have NO CLUE.   They were very understanding and caring, and did not turn their back on me.
MOST folks have NO IDEA what the liver does and how big a part it plays in the body, and what happens to you when it isn't in good shape!
I look at it this way... If I am honest with someone and they don't care enough to stand by me, to learn more, to be educated about it, to try to be there for me and help me thru this.. then they really don't care enough to be a part of my life! I don't need FALSE friends!  I give 100% to those I care about..I deserve the same! I understand that they are confused and scared, but so am I.  They also tend to think that i you aren't in the hosptial bed, then you must not be all that sick! I guess it's a " you have to be there" kinda thing..???
You can give others information, the truth.. what they do with it after it is offered, is totally on them!
I told my landlady right off the bat.. filled her in, she's been very understanding.
When I tell someone, I tell them what I have, and give them some basic info about HCV and briefly tell them what it has done to me, how I feel and what Tx is going to be like. and amswer whatever questions they have.. But I don't tell just anyone and everyone.
As some have said already ....EDUCATION about this disease is VITAL to everyone. because it IS an EQUAL opportunity disease!!  All it takes is a drop of blood, whether blood to blood or on an instrument. and people need to know the facts and that it can be prevented, and that they could already have it for years and not know it!  That is WHY we are all here!
Educating other causes them to think, which may in turn, cause them to be more caring amd compassionate towards others in general. The only thing to fear is fear itself!  (and ingnorance)!

[Sam Hall]

When i was first diagnosed i told anyone i soke to for longer than 5 mins. I don't think i have any real regrets but i would say that once said it can't be unsaid. This may seem a wierd thing to say but there is a little part of me that is proud to be who i am and that must by definiton iclude this whole crazy battle with this virus. I am not ashamed.
Sam Hall

[Califia]

Prometheans, unite!  We have nothing to lose but . . . . our viral loads. (Hate to admit this, but my sense of humor was sick even before HCV.)

[honey1616]

Lou,,,,I like you also come from a family that we don't discuss out business out in public.  That is the way I was raised and no need to cause worry to others right?  Everyone keeps bringing up the awareness which yes,,,people do need to be aware but this like you said,,,needs to be done on a much bigger scale. Me telling my next door neighbor, acquaintance etc...is not going to do that. I did talk to someone on tx and we both talked about aches and pains but other then that,,,I also don't see the point. The whole drug thing,,,I'm also getting tired of,,,Why does it matter if we got it from drugs, blood transfusion,,,toothbrush, razor,,or the toilet???  Shouldn't people be compassionate at the disease instead of the cause???

When I first found out I had this disease,,,,I cried and was in so much shock,,,I chose at time to call my mom, few close family members of course and very close friend.  When I went to my friends house and told her,,,,I need to talk to you about something and told her.  Her reply was,,,Ohhh I thought maybe you had cancer or something,,,its not like you are going to die.  Well everyone knows,,,,probably true but you know how devastating it is to find out you have it.  My friend never asked me about anything after that except one day she asked if I ever started tx and I said yes.  My sister on the otherhand that I am very close to and lives in another state,,,immediately said Ok,,,calm down and let me do some research here and see about getting you the best dr etc....All through my tx,,,She has researched interferon and knows what symptoms are because She Cares!!  Of course there is no need to tell distant relatives that you may see every few years that you really aren't that close to...What would the point be?  To worry?  A boss should know only like Fubar said if after beginning tx,,,,you are not feeling par for full days but that should be in confidence also.  Other people that have found out,,,,really don't know what to say so therefore they say Nothing...Yep,,,I probably won't tell anymore either,,,Just doing my time here and praying it all works out...The forum is a God Send for me and that is exactly what is carrying me right now!!

[Califia]

Amen to that.   Communicating with others who are in the same boat is a comfort; dealing with people who don't get it is a real pain in the arse.  I definitely have to be feeling emotionally generous--and energetic--to take on the public relations role.  You know, over the years the question I have heard over and over again ad nauseum is, "So how did you get it?"    The gall!  What kind of question is that?   It's certainly one I would never ask, but people do it all the time.  Like it's any of their damn business.   So after a long while I finally fligured out to say, "The question is not how do we get it.  The question is how do we live with it?"     That usually causes a slight glimmer of thought ... but how far they get with it is beyond my control.

I think people are worried that it might be catching.  Like they might catch it from you. Like they might catch MORTALITY from you!   Everyone's walking around in a giant state of denial about, well, the giant state of impermanence we live in.   Nothing like liver disease to raise all the big questions.   So in this sense I think we have the moral advantage.   We are vulnerable and we know it.

[GulfCoast]

I guess I'm in the same boat as everyone else. I've told family members and close friends. I did not tell my coworkers and all I said to management was that I was under chemo treatment for a blood disorder.

Most people are so freaked out about mortality that they really didn't ask too many questions. It really is one of the last taboos.

I am torn, as many others here, about educating the public about this disease. I feel that I should but everything is still so new and raw that I haven't come to grips with the issue. It is something that I do think about quite a bit.
Peace

[Califia]

You're not a leper, but it sure is feeling a lot like the 12th century around here.   New Dark Ages, anyone?   Even in "enlightened" Northern California,  the DEA is making life miserable for a few folks:

http://sfgate.com/cgi-bin/article.cgi?f=/c/a/2004/08/19/BAG9O8AC6V1.DTL

[silvermoon]

I still say that people should be told and educated.  WHY should we have to be silent. Silence helps spread this disease!!!
.WHY should we feel any shame,,no matter HOW it was acquired..   Yes, If you were an IV drug user or snorter..you probably did get it that way..PROBABLY.. not positively! There's no proof!  You could just as easily have gotten it from an improperly sterilized dental instrument or surgical instrument, or a colonoscopy, or your best friends razor, or a manicure,or you were in the military and they forced you to get vaccines, or were hurt in battle and got tainted blood or they used dirty equipment to save your life.. or because 20 years ago a stranger fell on the street and was bleeding, and being the kind person you are, you helped them without gloves on and their blood got into the paper cut on your finger..or you gave a patient a shot and they flailed their arms and before you could cap the needle it jabbed into your hand., or you were hit by a drunk driver and needed blood during surgery..
No matter HOW we got it.. did we ASK for it or go out looking for it? NO...
  Are people who contract West Nile Virus treated with disgust because they got a virus from a mosquito??  or LYME disease form a tick..? why not.. If they had  put on bug repellant before they went out, they wouldn't have been bitten..
  Do we say to a 400 lb person, sorry you don't deserve health care because you made you blood pressure high or your heart go bad because you wouldn't stop eating too much..
Do we say to ANYONE.. that they don't deserve treatment because  they deserve what they got..
Didn't this world learn ANYTHING from Ryan White and the other children who got AIDS simply because they needed blood to live..???
  NO.. No matter how we got it or what we got..This is a disease.. and it takes a helluvalot to go thru treatment!... we all deserve respect and understanding as human beings,  and the best care and treatment available, as anyone who is sick does.
All we can do is tell our story, give the facts of the disease, and treatment and prevention.. and ask for and EXPECT compassion and support.  If people we know are too narrow minded to give us that.. SEE YA!!  we don't need them..
((( GAWD.. was it ever HARD to keep my political views to myself!!!)))
As for all ya'll on here!... You guys.. ROCK !!!