What to tell people?

[Greta2012]

I've chosen not to tell anyone I'm going through treatment, except my husband and some close family.  I work and live in a little gossipy town so I really don't want anyone to know, but everyone keeps asking me what is wrong.  I've said the flu, but that excuse won't work for long.  Anyone have any good ideas??  I could go with the anemia since that is pretty true, but not sure how long that takes to fix usually.

[fighter300]

I am new to this too.  I just started out that I was going to be taking some treatments and that I would be tired and would probably loose weight.  They didn't ask, so I didn't divulge.  I think that people don't want to force you to share more than you want to.  My husband knows but I didn't tell my mom the truth.  I feel bad abput it but am unsure how people will react.  I am kinda afraid it would effect my kids so I am going to be quiet about it.  Maybe I am niave to it all and will learn how much as I go through this.

[orphanedhawk]

If the man you are referring to is who I think he is,  who claimed  he was infected by his wife via sexual transmission going into graphic detail.

I mentioned the air-jet gun innoculations which spread hep C to countless Vietnam vets. He replied, "O, I remember them, blood running down our arms." And I pointed out that it was much more likely he got hep C from that and not from trying to impregnate his first wife.
He actually woke up, and agreed.

Congrats on UND!

[Tekelcat]

If you need to be right, that's fine with me. And I am the first to admit I should have disclosed. But I am also a professional researcher, currently tx HCV and writing a book about HCV and its history. To me the data about sexual transmission is much more complicated than the CDC public feed allows. First there is no research showing men have been infected by their female sexual partners, though there is one forum member here who claims that's what happened to him, but the circumstances were most unusual. Second there appears to be no evidence at all of sexual transmission between monogamous heterosexual couples who do not have other risk factors, and there is absolutely no data suggesting sexual transmission between lesbian partners at all. I recall my hepatologist's advice to me perfectly and there was no proviso. Indeed, I just called him and given the nature of my usual sexual activities, he still says  "no risk." And he's a research hepatologist who leads the science on HIV/HCV confection. I don't mind taking a shot for not being honest, but I do mind being told that the science shows that in my case HCV could have been transmitted sexually. It's certainly not a one rule fits all scenario. If it were, HCV would be listed as an STD. It's not. Why, do you imagine?

PS: Just heard I am still UND at W12 of SOC and GD9451/GS5885

[orphanedhawk]

Loved your ski lift story.
Way to go, James !

[FaithforHealing]

(woops, I guess certain keyboard symbols do not work well. I'll try to repost)

Re: "Sex"?: yes  Dentist: yes  .... what other activities do you suggest should be in this group?  Tennis?"

That one is for sure snarky, lol. I did not suggest, mention, or allude to any specific activities other than those per the CDC, and certainly nothing as ridiculous as tennis. I simply said, "activities".  If one is not clear on what those "activities" are, one should attempt to educate oneself and the CDC website is a good place to start. No need for anyone to perpetuate old wives' tales with an example of  tennis; to do so is simply inflammatory discourse.

Re: "I discussed disclosure with my hepatologist and the advice was that there was no risk to her as long as I kept my toothbrush, etc, separate and we didn't engage in sexual intercourse when either of us was menstruating."

Really? "No risk"? If you listen carefully, what he/she is saying is "no risk except for..."  with "except for" being the operative concept. The "except fors" are the potential risks and given his/her examples they are those that pose possible blood to blood contact/sharing, no? Again, as much as one would like to say "no risk" or "0 risk" it is simply sticking one's head in the sand to do so. The CDC says, "low and present risk"....one cannot rationalize or wish that away. Blood exposure can occur in many ways other than toothbrushes or menses. There is a risk of this blood exposure during sex even when the partners are incapable of menses.

Re: "I disclose now with romantic interests because I want them to know who I am and have a choice about the freight I bring into a relationship, not because it's a matter of risking transmission of the virus to them."
If one chooses, for whatever reason, to incorrectly comprehend/interpret doctors' and the CDC's words as "no or 0 risk", I guess one has that option. In all fairness, one should let potential partners read the CDC info and interpret it for themselves. As infinitesimal as the risk may be, a risk still exists. Like it or not, infinitesimal is not equal to 0, but is greater than 0.

Re: "I'm really wondering here ----"

Anyone left wondering about HCV facts should go to http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm.

[FaithforHealing]

Whoa! Hey fellow comrades in the fight against HCV, don't kill the messenger with sarcasm, lol.

My comments were not meant to be personal attacks, but evidently my words ruffled a few feathers. (Maybe tone is misinterpreted in writing?) My concern is information and misinformation on which people base their decisions. I'm just going with what every doctor has ever told me and maybe more importantly with what the CDC puts out to educate the public and health professionals (i.e., doctors).  http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm:
1.Patients should be informed about the low but present risk for transmission with sex partners.
2.Sharing personal items that might have blood on them, such as toothbrushes or razors, can pose a risk to others.
3.Cuts and sores on the skin should be covered to keep from spreading infectious blood or secretions.
4.Donating blood, organs, tissue, or semen can spread HCV to others.

Re: "Of course, if as you think, to have HCV and have sex with someone is putting them at a health risk, then HCV must be considered a "threat to the public" surely?"
<<Pretty snarky, but I'll respond in case you are serious. According to the CDC, not to "if as you think",  there is a definite "low but present risk" which is clearly (as much as one might like to imagine otherwise) not the same as "no risk" or "0 risk". So per the CDC, yes, if one is having sex with "the public" (as you say) they would/could be a threat to the health of "the public" (again, according to the CDC, not me). The CDC literature does not become null and void (i.e., "low but present risk" does not become false) if one is having sex with "the public". It is not "if as you think" but "as what is written" by the CDC.
Re: "Sex"?: yes  Dentist: yes  .... what other activities do you suggest should be in this group?  Tennis?"
<>>

Re: "I discussed disclosure with my hepatologist and the advice was that there was no risk to her as long as I kept my toothbrush, etc, separate and we didn't engage in sexual intercourse when either of us was menstruating."
<>>

Re: "I disclose now with romantic interests because I want them to know who I am and have a choice about the freight I bring into a relationship, not because it's a matter of risking transmission of the virus to them."
<<>>

Re: "I'm really wondering here ----"
<<>>

It is interesting and ironic to me that possibly those who advocate disclosure for the purpose of "educating society" may themselves be perpetuating misinformation. "Buyer beware" (i.e., advocate for yourself).

[James10500]

I'm not ashamed I had HCV, I treated it, and I beat it.  There was just an article in all major newspapers about HCV killing more people than AIDS and people still won't talk about it.  To each there own! But if we can create a dialog in this country about HCV we might encourage testing even saving some lives.  

True story I was riding a chairlift with two guys earlier this winter.  I explained why I wasn't at work last winter.  I talked about what HCV is, the treatment for it and what it was like. I also told them I was SVR. After we got off one of them thanked me because he has HCV and he is afraid to talk about it.

I'm on a mission to when ever appropriate talk about HCV and inform people.

[Tekelcat]

"It surprises me that the one time you definitely, without question, should have disclosed, you didn't. I can see how that could be a deal breaker, not just because of lying, but by putting someone's health at risk.

As far as co-workers, in-laws, etc. go, I don't see the point. An HCV carrier is not considered a threat to the public otherwise there would be a reporting system."

Of course, if as you think, to have HCV and have sex with someone is putting them at a health risk, then HCV must be considered a "threat to the public" surely? This, at least, is the basis for legal cases where a person with HIV has knowingly had sex with a person without disclosing.

I'm really wondering here ----

[Tekelcat]

Look, if there is a moral obligation to disclose when sexual conduct is involved then given the data on sexual transmission of HCV when there are no other behavioral variables, such as IVDU, extreme forms of sexual conduct, needle sticks, etc, going on, then the moral obligation to disclose is surely about honesty and transparency rather than about risk? I have probably had HCV for about 40 years. Two husbands, a same sex marriage, and a couple of serious partners later, and a lot of delightful hanky panky with all of them, nobody has been infected by me, and I know, I've checked. HCV is not an STD. I disclose now with romantic interests because I want them to know who I am and have a choice about the freight I bring into a relationship, not because it's a matter of risking transmission of the virus to them.

[Kristina538]

I'm wondering activities you believe 'the moral obligation' pertains to?   Everyone, these days, is aware of HIV, Hep A,B,C, plus many other more contagious diseases,and everyone has a moral obligation to look after themselves against other who aren't aware they carry a disease.   Sex?: yes  Dentist: yes  .... what other activities do you suggest should be in this group?  Tennis?

"I hope everyone out there realizes that while they do have the option not to disclose in some situations, in others they do not. If you are engaging in activities, whether they be through work or relationships, that could endanger someone's health, you have a moral obligation to either disclose or to cease the activity. At least I hope everyone will exercise that moral obligation."

[Bovary73]

" I think I am the elephant in the room sometimes but it is what it is. ."

well said...lol...just how I feel these days...trying to avoid attention ;) lol

[Tekelcat]

Hmm, well my non-disclosure to my partner was before I came to terms with my HVC and learned to be honest about it. I am still appalled by my behavior, but mostly in terms of m lack of honesty. I discussed disclosure with my hepatologist and the advice was that there was no risk to her as long as I kept my toothbrush, etc, separate and we didn't engage in sexual intercourse when either of us was menstruating.

[ceanothus]

I also remember a similar discussion here just a couple of months ago. I'm one of the
"open with anyone" group, and I've never had any cause to regret that choice, but as I read all these varying responses it is finally occurring to me that the responses we get are surely much affected by where we live and what our community is like. I'm in California, in the SF Bay area, and I suspect that people here may be a bit more accepting of differences than in some parts of the country. I do want to suggest that if you are afraid of being ostracized as a drug user, well it is pretty simple to invent a more sympathetic story. I had a transfusion in 1984, and that is all I mention, even though I did also do a tiny bit with IV drugs in the late 1960's. I told my hepatologist about that, but personally I  believe I got it from the 1984 transfusion anyway and he doesn't argue with that. I just want to "give permission" to all to use my story as your own if it makes it easier to share the hardship of tx. I can't even imagine going through all this while keeping it all secret - my friends and family help keep me going!

[FaithforHealing]

I hope everyone out there realizes that while they do have the option not to disclose in some situations, in others they do not. If you are engaging in activities, whether they be through work or relationships, that could endanger someone's health, you have a moral obligation to either disclose or to cease the activity. At least I hope everyone will exercise that moral obligation.

Wow, the pharmacist story is over the top! Along with the loss of a job opportunity, you win the prize in horror stories for disclosure. It's amazing that you remain steadfast in your belief that it is wrong not to disclose. You are definitely a tower of strength in standing for your convictions. On the other hand, your experiences may have just convinced some people to definitely keep it to themselves.

It surprises me that the one time you definitely, without question, should have disclosed, you didn't. I can see how that could be a deal breaker, not just because of lying, but by putting someone's health at risk.

As far as co-workers, in-laws, etc. go, I don't see the point. An HCV carrier is not considered a threat to the public otherwise there would be a reporting system. Teachers have to be drug and TB tested (in some states) and fingerprinted, but not HCV tested.

I think it all comes down to one's own personal need to disclose or to not  disclose. I can really relate to not wanting the sympathy/pity thing, that would drive me crazy. And as someone else said, we don't report our hemorrhoids to others (although there are people who do and that drives me crazy, too). If people aren't aware of the numbers of cases out there and the recent news imploring all baby boomers to be tested, they really don't have much interest in following social or health issues to begin with.

[lapis]

The reactions of others made me feel ashamed of having this disease, although I did not know how I became infected.  My PCP told me that it was a sexually transmitted disease (implying that I brought it on myself), and he told me it was incurable.  He was wrong on both counts.  If some doctors are so uninformed about this disease, no wonder the general public has such misconceptions!

I talked to colleagues in the hospital where I worked, believing that I was educating them, sharing my story and hoping to help prevent someone else from becoming infected.  I was shunned after that.  No one wanted to know about Hep C, or to believe it could happen to them.  This was 15 years ago.

Now I am cured, and I am speaking out about this disease.  After so many years of being afraid and feeling ashamed, I have finally found my voice.  I do not want anyone else to have to feel the stigma, and I wish that no one else had to become cirrhotic or develop ESLD.  I hesitated at first, questioning whether I wanted to be "the face of Hep C," whether I wanted to go public and be known because of this, but now I feel empowered, and I hope to help others to feel the same.  I am one of many who are now speaking out.  It may take some time, just as it did with HIV, but eventually the public will be educated.  They will learn that many, many people have been unknowingly infected.  It is so unfortunate but true.  

[belle19]

it's no one's business how we got it, just that we have it.  no need to explain it to anyone.

[suezeeque]

I have no problem answering any questions with my hepatologist or any member of his team.

I was more referring to the walk-in jackass I saw to get some additional blood work...  Wondering how my hemoglobin, etc was doing and being 3 weeks away from my next visit to the hospital.  That moron has no valid reason to be asking asking me how I got HCV...  

[Tekelcat]

I might also add in response to an earlier part of this thread in which medical staff asking how we got the virus was discussed, that there are some good medical reasons for such questions, e.g., working out how long we may have carried HCV, and defining extra hepatic sx since research shows that those of us who got it through IVDU have worse extra-hepatic sx than those who contracted via other vectors. But, only doctors should be asking such questions.

[Tekelcat]

Disclosure at work and disclosure with family and friends are two completely different matters. My policy is not to lie or avoid in either space, but I don't volunteer the information at work. Friends and family are a different matter, and I have to confess I am horrified when I hear that people haven't told their partners or their in-laws and so forth. I did not disclose with my last partner until we were about 10 months in and it was getting serious. My failure to disclose ruined the relationship, not the fact that I had HCV, but that I did not trust her enough to disclose. I've had some friends turn away, for sure. And recently a pharmacist asked why I was taking Oxycodone and without thinking I replied, "Oh, I'm treating for HCV and have bad bone pain as a side-effect." He looked at me in the middle of the drugstore and said, "What, are you a junkie?" I reported him to his professional association and he lost his job. I've had people act like I am going to infect them with Ebola, and I'm pretty sure I failed to get a professional gig, not so much because of the HCV, but because they felt I might not be strong enough to do the work effectively, thanks to the sometimes very obvious effects of tx. Without a doubt, people must make their own decisions about disclosure, but also without a doubt, HCV is not simply a private matter as many suggest. HCV is very much a social, cultural, economic and political matter, like every pandemic disease. In my view, if you can't own up to your place in this matter, you're doing yourself, your HCV peers and the future generation a disservice. It's not about educating, it's about being honest when a question or an opportunity gives you a choice between prevarication and the truth.

[orphanedhawk]

They do them in Arizona, or at least they did when I was there:)

My only experience in Texas was on my way to N.O on Amtrak.
The train hit a truck outside El Paso~true story.

One thing I'll say for Texas. . . it is a BIG state.

[stormy456]

I can tell you that they do NOT do drumming circles in Texas, OH.  We live on a different planet ;)

[orphanedhawk]

So true bean.
We do live in different realities.

Although I forget sometimes, especially when I get off into my riba rants, I'm very thankful to live the life I'm living and know how different it is in other places. My daughter's in Arizona, just across the border but a world apart.

( Prayer circles? Is that anything like drumming circles?  lol )

Wishing you peace and SVR,
OH

[frijole]

I guess it was greta that I was referring to on the original question, not faithforhealing.   This is a good informative thread with lots of opinions on both sides.

[frijole]

I live in an extremely conservative town and I have an equally conservative job.  I am the boss.  My choice to not tell anyone but my business partner at work was sound and discussed between the two of us.  I could convievably lose clients if the word got out.  It is not just the particular disease itself but that I have seen people bail from their accountants before when they got sick.

This is such a long treatment - at least for me. I think flcyclist spoke the closest to my feelings.  I don't like sympathy.  I don't like being put on prayer lists without requesting permission.  I had a business associate email me and ask me if I was sick a couple of months ago because I was on the prayer list of a certain church.  I have no idea who put me on the list but I do consider it invasive.   I don't want my employees asking how I feel every day, and I certainly don't want them to have to discuss with clients why I look bad.  It is not their responsibility.

In response to your original question, faithforhealing, I have begun to tell people I have anemia.  I get a lot of curious looks and they want to know if I am taking iron.  They really don't understand but that is okay.  When I got pneumonia on tx that was a good cover for far longer than it took for me to recover from it.

Orphanhawk.  I admire you but can't do it.  You are an artist in the bay area.  I am an accountant in Midland, Texas.  Believe me, there is a world of difference in our lives.  In my dreams I would like to be an HCV ambassador but that just does not seem to be my reality.  I think I am the elephant in the room sometimes but it is what it is.