Aa
Aa
A
A
A
Close
663420 tn?1248677385

Talking about Hepatitis - To tel or not to tell?

I wanted to write this post because I have not seen this issue come up. It may have been talked about before I just haven't seen it. I was diagnosed with Hep C back almost a year ago. I just started a clinical trial last week. The issue I want to talk about is whether or not you should tell your friends, acquaintances that you have Hepatitis. I find the issue a little difficult to talk about really. All my family members know I have Hep C.

This forum is an easy place to talk about Hepatitis because that's what's it's for and the people who participate are most often diagnosed with Hepatitis. We don't have anything to hide here. Most of us on this forum have one thing in common, which is what leads us to this forum. There's no discrimination here. But in the real world trying to explain to someone you have Hepatitis is like a whole different issue. They don't really understand what Hepatitis is or how it works. They have preconceived notions that it can be contagious threw physical contact. There are a whole host of issues that the general public does not understand about this virus.

I have a friend ( It's really a group of friends)of mine that I told I had Hepatitis. I typically see this friend 6 or 7 times a year but since I have told him I have Hepatitis I have not seen him one time. I'm usually invited to party's and other events and not one time in the last year have I been invited to any events. It's like once this group of friends found out I had Hepatitis they just want to stay clear of me. I get the feeling that they seem to think if I come around that somehow they can be infected by me. So I still talk with them over the phone and stuff. I just haven't seen them in person. I also am a member of a club and I have been able to participate in club meetings up to this point but now that I am being treated for Hep C. The drugs are having a significant impact on my health and therefore may not be able to participate in club meeting as I would normally do. How do I explain this to them? I'm afraid that if I tell them I have Hepatitis that I would be discriminated against by at least some members. I could get kick out of the club altogether. I feel like some people will just look down on me and not want anything to do with me anymore. I've thought about telling them I have cancer instead of Hep C. I think they would be more sympathetic to the situation but then I would be living a lie which is something I don't like. I'm going to have to tell them something and I just don't like the idea of telling them I have Hep C. So I find this whole situation a bit difficult. Should I tell or shouldn't I? I know I can't be alone in this situation. I just wanted some feedback about how some of you handle this situation. I think it's a good topic to talk about and I think I would find it interesting to see what other forum members have to say about this subject.
Peace!
Keith
71 Responses
Sort by: Helpful Oldest Newest
Avatar universal
"I have not seen this issue come up" Rest assured, it has come up before! (g)...I really is a personal decision you'll have to make for yourself. For myself, I told no one except my immediate family..I was my choice...I will say, I have told one friend since I svr'd...read into that as you may..;^)  I'm sure you will get many varied responses, from sign carrying advocates to closet heppers...;^)....that said, it is my firm believe that one has to tell anyone who may be put in a position of infection..ie, other docs, dentists etc.-it is the right thing to do, regardless of any normal precautions they might take during there normal course of business
Pro
Helpful - 0
476246 tn?1418870914
I'm very open about it and have only had positive feedback from people, no matter who I have told.

Marcia
Helpful - 0
577132 tn?1314266526
First of all, if those friends have really stopped seeing you because you have Hepatitis then they're not really friends, are they?  

You have 2 options there, forget about them, or sit down and educate them.  People are quite misinformed and if we want that to change we have to do something about it.  Also, there are so many types of Hep (A, B, C, D) do they know which one you have or are they just guessing?  It depends if you want to go that deep with them, and if you don't then are they friends or just social acquaintances?

Secondly, telling people is indeed up to you and only you will know what feels comfortable.  At first I told only my close friends and my close work colleagues and my boss.  I felt I had to tell them as I knew I was going to experience some changes and I wanted those people around to be well informed. I keep them updated all the time.  

Up until recently, those were the only people that knew at work.  For some rash reason I decided to tell two others work and here is the amazing thing: neither of them had noticed any changes in me!!  I guessed that was cos I was keeping a low
profile but they hadn't even noticed that either!!  Most people are so self absorbed they don't really notice others!

I have tried the vague I'm on medication mumble when people have asked why I don't want a drink or why I have a bandanna on and they immediately assume cancer and then start becoming very caring and concerned and then I feel like a fraud so I have ended up having to tell.

I have found the "blood disorder" approach the best, deliberately not naming the virus.  That usually satisfies folks without divulging too much of yourself...

Sometimes we think our response or situation is much more visible than it actually is, in reality some people may not even notice a thing so long as you keep a smile and good attitude.

On the days you can't manage that, you can have any number of ailments that are understandable to most but have no stigma attached: ie: migraine, gastroenteritis, flu, hay fever, anemia...  The list is endless!

All the best :)
Helpful - 0
476246 tn?1418870914
Sorry, am not well at the moment and did not answer your question properly.

Just tell people you are on chemotherapy and thus going through a hard time. You do not need to tell them what the chemo is for. You can just say that you prefer not to talk about it, as you have had hurting responses from people.
Helpful - 0
Avatar universal
I never even read you post yet...but i will...KEEP YOUR MOUTH SHUT......PLEASE
Helpful - 0
Avatar universal
I just read your post....i see what you mean...if some people see you not feeling well and its caused by the tx drugs....you feel you have to tell them its the drugs and not nessesarly the hepc...?..is this a concern you have also?...well  sorry for sounding so blunt....i will admit i told my mom...and brother...that was it....and telling your co.workers is like putting an ad in the front page of the new york times newspaper....work gossip is the worse gossip on earth
Helpful - 0
Avatar universal
It is a personal choice.  I've told my immediate family and that is it.  My family is supportive, but I don't expect them to treat me any differently or make a big deal out it because I really never have myself.  My coworkers do not know and I have a very high profile job.  My physical appearance has changed and I'm not quite as industrious at work as I used to be, but the people I work with have enough respect for me that they just don't ask.  I would bother me terribly for people to ask me everyday at work how I was feeling or if there was a problem to automatically blame it on my treatment.  I'm very independent and don't want sympathy from people because they think that's how they are supposed to react.  My work hasn't suffered because of treatment, my overall health has, but not my work.  I have great neighbors and when we get together I'm the same person as I was before tx.  They don't suspect anything and I have always lived by the don't ask, don't tell policy.  If someone were to ask me outright, yes, I would explain but only once and then I would expect it to be dropped.  I don't have the time or willingness to explain and educate everyone who knows me about hepc.  People will tell you they totally understand, but most people don't and the stigma doesn't go away as a rule.
We are changing insurance companies the first of the year so I had to disclose I am treating for hepc.  I told the insurance broker who came to collect the applications at my work that I did not want any of the upper management knowing about my condition.  She said by law, she can't tell.  However, when we started discussing hepc, she said she knew first hand how people were treated by others, even within the insurance companies.
I told her I currently did not have the active virus and she said well then if people at work did know they shouldn't be concerned about catching it because I could no longer transmit it through sharing utensils or coffee cups.  This is an insurance agent who deals with all types of infectious disease and has for years.  I just shook my head and politely ended the conversation.  
That's how I've handled this so far and it's working quite well.  Whatever you are comfortable with is what will work for you.
Trinity
Helpful - 0
439539 tn?1233465815
Remember this.Once you say words, you can't take them back.Once SVR will it matter?
Or tell everyone and educate as you go and maybe you could make people open their eyes and get to the Dr. to be tested.
This has to be your choice.Your the one living the life with the people you tell, or don't tell. Good luck with your decisions.
Tammy
Helpful - 0
374652 tn?1494811435
I told my immediate family and far away friends,  I even think I may have been fired for the hep c diagnosis.  I really dont trust anyone who holds my livelihood in their hands.  Its sad, but true.  i have not started tx. yet, but I would tell them its chemotherapy.  I've had cancer and that was alot easier to tell people about, because they know thats not contagious, even though hep c is blood to blood, I just dont trust to many people with my welfare.  I am just very careful with my interactions.  and really how many times do you bleed into somebody elses broken skin?  
i wish i worked somewhere where people really cared about each other.  
its all up to you what you want to do, but remember you cant take it back. you know who you can trust.  
Good luck with it all.   M4now
Helpful - 0
374652 tn?1494811435
"I told her I currently did not have the active virus and she said well then if people at work did know they shouldn't be concerned about catching it because I could no longer transmit it through sharing utensils or coffee cups.  This is an insurance agent who deals with all types of infectious disease and has for years.  I just shook my head and politely ended the conversation."

Since when could you ever get hep c from sharing utensils or coffee cups?  Unless it was a knife that cut you then the next person cut themselves with it.  .......
Helpful - 0
Avatar universal
I dont mean to sound rude or anything...but lets reverse the situation for a minute here...if you were "clean"...and someone told YOU they had a contagoius disease...would you invite them over for supper and play with  your kids...i bet you would not,,,be honest here...why would you?....i dont feel bad that people dont want o be around me...if i told them that is....its just human nature...so why put your self  in a akward situation by telling the all you" friends"

just my thoughts.
Helpful - 0
408795 tn?1324935675
I wouldn't tell anyone besides family and very close friends.  Rock is right about workplace gossip, ppl are like little kids when it comes to gossiping.  I work in the health related field and I feel that's even worse, I had to give my boss an excuse already, so he already knows that I'm on tx, but I didn't tell him what for.  I told him that I was sick and I didn't want to talk about it, and more important than that I don't want anyone to know.  It's easy enough to figure out it's from the Dept. of Heptology and all he's gotta do is look up the doctor's name.  That's ok, I didn't have a choice as I was already being documented for missing too much work.  Be very careful, who you tell as someone already said, once you say those words, you can't take them back.  good luck
Helpful - 0
Avatar universal
That's what I'm talking about Mary.  She didn't have clue.  I think before ending the conversation I said that hepc is transmitted blood to blood but she didn't really know what she was talking about and I didn't have the temperment at that point to go into it.  
You can educate people but they will form their own opinions whether it's right or wrong.
Personally, I don't care what people think but I do like my privacy and my life is not an open book to all.  I share many aspects of my life on this forum, but people get it here because they live with it everyday.  I have never expected the same understanding from the public because they don't know.  I can educate them until the cows come home and they may look me straight in the eye with all the understanding they can muster up.  Doesn't mean they will look any more favorably on me for sharing my illness but it would probably give them somthing to talk about around the water cooler when I'm not around. LOL
Trin
Helpful - 0
Avatar universal
OOPS, didn't phrase the properly.  Not sharing my illness, heaven forbid, sharing the fact I have hepc.
Helpful - 0
Avatar universal
I just want to say that Trinity said it so well for the way I see it.

I've hardly told anyone except my immediate family, and even some of them I wish I hadn't. My boys just don't know what to make of it and treat me solicitously with kid gloves, which I hate.

It hasn't been hard for me to keep it to myself somehow (wk 27/48).  Even the odd professional (like my family doctor!) says such ignorant things about it that confirms to me the less said, the better. I do not want to be a spokesperson or educator during tx, which requires more energy than I have to expend.

My hepatologist told me a shocking story of ostracism among his hepatology nurses, who became leery around one of their colleagues who'd had a needle stick and contracted HCV. They wanted her to use disposable paper plates at work! That persuaded me to keep it under wraps. They should know, of all people and they either don't or are frightened despite the facts.

If I'm having a bad day, I lie straight-faced. I usually say my back is killing me and the painkillers are knocking me low. Since back pain is the most common complaint in the country, it seems to fly without anyone batting an eyelash. Sometimes I say I 'must have anemia'  because I'm dead tired.

I couldn't bring myself to say I'm on chemo, which precipitates a strain in the conversation and unknown consequences. Several people do highly endorse this 'chemo' sound bite, so you have to figure out what works for you.

Some people are comfy telling all and others are reserved, so it comes down to what kind of person you are.

If I may make a sexist comment (you're a guy), many men typically share little about their personal problems publicly, my husband included. He's very old school, stiff upper lip. Sometimes I wonder if he'd tell anyone at work if I died!  I'm not that stoical but I do tend to have a similar outlook.

Rocker, I'm with you on this one, like the transit of Venus. :)
Helpful - 0
Avatar universal
Another thing to ponder...what do you gain by telling anyone....?....most people dont give a rats a,ss anyway....if you live or die...i know them are tough words....but its true.
Helpful - 0
663420 tn?1248677385
Thanks to everyone who weighed in on this subject. I think it's an important subject to talk about and it's an ongoing problem we all face. It's sad to think that people can be so insensitive about a subject or illness that the people who have it cannot comfortably talk about it with openness and honesty. I have already seen with my own eyes the form of discrimination that comes from people who no very little about this virus and are simply over paranoid about it that they will alienate even close friends just to protect themselves when the simply fact of the matter is that those same people come in contact with other unknown infected people all the time, but because they don't know who they are it's okay. I guess you can't do anything about what you don't know.

My conclusions are you are better off not telling anyone who doesn't need to know. Unfortunately I find it difficult to bring awareness to the Hepatitis virus if you are not willing to talk about it. One good point I would like to make for all of us is that we have this forum to turn to when we have questions and I don't have to worry about being discriminated when doing so. So I thank you all for that!
Keith
Helpful - 0
Avatar universal
If you tell regular fok about the dangers of hep..they will do what they dio anyway..ya cant win....its like ryinhg to help peoople with cettian heal-th foods...ya cant beat a dead horse
Helpful - 0
148588 tn?1465778809
The people I work with and my friends learned more about pegylation, viral loads, and everything else related to tx than they cared to know. I understand not everyone is fortunate enough to be in that position, but those of us who are will make it that much easier for the next group of people who have to do tx.
Helpful - 0
148588 tn?1465778809
Beat on dude. Just don't push product. Use generic terms and don't get your panties in a bunch if someone wants to discuss something besides anecdotal evidence.
Helpful - 0
Avatar universal
you are on your own my friend...when it comes to tallking bout  health foods here...i rather have a root canal are 4 molar extractions....i was not pushing anything...and i dont ear womans panties.........at least i dont rember...i had some wild times in my life.........can you say....blue green algae.....is that geniric enuff....the horse is not moving still
Helpful - 0
498948 tn?1253055841
...and i don't ear womans panties......

was that eat or wear?  

You must have had some wild times if you don't remember......
Helpful - 0
Avatar universal
Icould write a novel about just my last 25 years...it would fly of the shelves....if im gonna wear em...i may as well eat em too.....opps.....have i said too much?....ill stop now
Helpful - 0
498948 tn?1253055841
The visual image of a big, biker-type of a guy wearing frilly, skimpy ladies panties is just too much!!!  LOL
Helpful - 0
Have an Answer?

You are reading content posted in the Hepatitis Social Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
Can I get HIV from surfaces, like toilet seats?