Hep C Discussion Forum

jimbob · Senior Member

RE: Question About Disclosing HCV Status to Others

wmlj1960 · Moderator

jimbob wrote:
"Follow not truth to near thy heels, lest it dash out thy teeth."

-George Herbert

Wise words, and I also have not respected this phrase enough in the past, and that has cost me much regret.

wmlj1960 · Moderator

Huey wrote:
Mikes Supermike commit reminds me of a song,
"Woke up this morning
started to sneeze
had a cigarette
and a cup of tea
CHORIS Supper man
              supper man
             wish I could fly
             like suppermike. lol

Now all we need is video/audio editing software and we'll be ready to go on tour! LOL biggrin

The Kinks

Huey · Guru

Mikes Supermike commit reminds me of a song,

"Woke up this morning

started to sneeze

had a cigarette

and a cup of tea

CHORIS Supper man

supper man

wish I could fly

like suppermike. lol

jimbob · Senior Member

"Follow not truth to near thy heels, lest it dash out thy teeth."

-George Herbert

Unfortunately, I have not respected this phrase enough in the past. Obviously, there are situations when it should be disclosed - but mostly not (IMO)! It tends to spread like wildfire....And for all the reasons listed below, and more.

-- Edited by jimbob on Wednesday 27th of August 2014 02:50:58 AM

wmlj1960 · Moderator

Isiscat2011 wrote:
Alas, we are all only human.

Indeed we are. ALL of us.

Your post reminds me of a phrase given to people in the situation you described. "Fair Weather Friends" but I don't ever really recall hearing the phrase "Fair Weather Family". But the way I see it, if the shoe fits - wear it...

And I've even been a shining example of "A Fair Weather Son" when my beloved mother died from cancer in 94. I wasn't there for her the way I would have liked to have been due to my inability to mentally deal with the issue within myself. That's the biggest regret of my life, but as my mom would say, "It's Water Under the Bridge Now".

So yes, even SUPERMIKE is human. smile

Isiscat2011 · Guru

wmlj1960 wrote:
So true, even sometimes with family and close friends.

Human beings are funny creatures. I just read there is a petition circulating to rename the Waldo tunnel after Robin Williams. It reminded me that sometimes people are kinder to complete strangers (especially celebrities) than they are to their own family members.

When I was diagnosed with HCV I told about a half a dozen family members right away. This news sparked an outpouring of tears, concern, and most notably promises. Promises to do whatever I wanted or needed them to during treatment and thereafter (essentially forever) if need be. Fortunately, I don't need that much, but it was interesting to see a few of them completely forget about my health problems, in a relatively short period of time. The sudden onset of amnesia I suppose. lol

You really do learn peoples' priorities in a situation like this. I think we are very fortunate if we have even 1 or 2 people in our lives who actually would place our needs above their own wants or needs during difficult times. Difficult times will make some relationships closer and create distance in others. Alas, we are all only human.

Huey · Guru

I pushed that LIKE button,

wmlj1960 · Moderator

Isiscat2011 wrote:
We can't expect to change deeply ingrained cultural values and fears in everyone we meet or know.

So true, even sometimes with family and close friends. In the early 90's after I was Dx'd HIV+, I got educated about the illness and found out that others have much less chance of being infected by me than I have of catching a common, usually harmless to the healthy individual, infection from them (eg the common cold), which could easily prove fatal for me.

But try to explain that to them. I was going to educate them all - hence no more of my being shunned due to my condition. But that's like arguing with a stop sign or In one ear - out the other...

And I'm sad to say that I fit this mold to the tee before I started getting these HCV, HIV etc diagnosis, hence getting educated about the facts. And I even removed myself from an otherwise healthy situation based on my opinion on occasions. Ignorance is not necessarily an individuals fault. Taking action based on that ignorance as being fact is an entirely different story. IMO smile

Isiscat2011 · Guru

Most healthy people are simply not comfortable with illness. Even if they are sympathetic they don't know what to say or how to cope with another's illness. We live in a culture that fears illness and death rather than considering these things a natural process in the cycle of life. The discomfort is even greater when the illness is infectious because that makes others fearful of their own mortality in a very tangible rather than abstract way.

The only people I know who are comfortable with illness/death are healthcare professionals and caregivers and even they can be fearful of infectious diseases. Healthcare professionals are able to cope by maintaining some emotional distance and objectivity.

Even sick people can be unaccepting of and unreasonably fearful of their own illness and mortality.

We can't expect to change deeply ingrained cultural values and fears in everyone we meet or know. Cultural norms are changed over time and on a larger scale. This is why I discuss my HCV with others, outside of family and medical professionals, on a need to know basis.

-- Edited by Isiscat2011 on Tuesday 26th of August 2014 05:54:16 AM

Mugsy · Senior Member

I really wasn't upset and there was no bannishment from the group, just a feeling I got that they weren't very comfortable with my disclosure. And as I said before, I do understand their fears, but for the record, quilters use their own supplies, we do not share pins or needles and there really is not a massive loss of blood when you quilt, at least there isn't if you do it right! Again, I am not upset or hold hurt feelings against them, I just wish I had been able to help them correct their general ignorance.

Thom · Member

Mugsy wrote:
I will add that the quilting group I was hoping to join was rather stand-offish when I told them. Guess I can understand their fears. Haven't gone back ;)

Really I can understand their fears as I would imagine that this is an activity in which people semi regularly poke their fingers with needles. I'm sure that we all face some degree of anguish caused by general ignorance.

Mugsy · Senior Member

Ha! A chimp with mahvelous teeth! Must be all the bananas I eat??? My nickname as a kid was either mugsy or J-Fred because they thought I resembled J Fredrick Muggs from the Todays Show from the 50's. Think I'd get strange looks if I wore a pill head with a chimp body!

Huey · Guru

Tig56 wrote:
Sorry to hear about the narrow mindedness of that group Mary. Doesn't sound like a group you really want to spend quality time with anyway. I'd love to see some of your work when you get the chance to show off your talent!! By the way, the teeth of the chimp in your avatar are beautifully white, lol!! He/she has a nice smile!
Tig

And i thought having a pill shaped head for 6 months was bad,, What a strange side effect, you look just like a chimp

Tig · Admin

Sorry to hear about the narrow mindedness of that group Mary. Doesn't sound like a group you really want to spend quality time with anyway. I'd love to see some of your work when you get the chance to show off your talent!! By the way, the teeth of the chimp in your avatar are beautifully white, lol!! He/she has a nice smile!

Tig

Mugsy · Senior Member

I will add that the quilting group I was hoping to join was rather stand-offish when I told them. Guess I can understand their fears. Haven't gone back ;)

TazKat · Senior Member

I have been open about it, I am virus clear as of july. we will know in oct if I am svr.. but... my co workers have known about mine since 2001 when I started work. at first, no one seem to really care. I have been through 4 treatments. in the last few yrs some of them have been complete aholes. talking bout my health, which I know cause someone told me. got an email for proof of one. I can't quit, I will have no insurance. live alone. so I just shut my door at work & screw em. I have vented about this to all my friends here. it really helps & I thank them for listening to me.... so keep head up & just be you. & get well. that is the main thing. u take care of u!!!!!!!!!!!!!!! smile

Peace out

Taz

Anon4This · Member

Thanks for your thought. I'll be starting Sovaldi/ledipasvir sometime in October for 12 weeks, and I'll definitely keep up here and share my experience with others and support them in any way I can. Guess that is our lot in life, but it isn't such a bad one.

Sorry to hear about your similar experiences. It sucks when there isn't that "oh wow are you going to be ok", and instead you get "well how does this impact me me me me me always me me".

I think there is a lonely future ahead for this guy. He's lost the best friend a person could have.

Anon4This · Member

You know, that absolutely makes sense. If it were not this it would be something else. Some people just hunt for things. I'm not at any loss for friends but it is tough when people change a lot over the years and become paranoid, bitter and mean. I've already blocked them from calling me /texting me and will be letting a small inner circle in until I finish treatment.

I just weep for any and all of us who have had to endure this sort of stuff.

I have a saying: "Mean People Suck. You're Mean. You Suck".

Huey · Guru

Back to the root question concerning Disclosing Status, It seems that my efforts to educate my fellow workers of Hcv made it too clear and well known that I had this Disability, Without this, I would not have had grounds for the complaint. So in my case disclosing this to my employer helped me. Even though I was made an immediate target.

Huey · Guru

Anon4This wrote:
@ huey - wow, i hope you have a good lawyer. If you do not, and are in New England, i can give you a number of a great guy to call. People are so misinformed and ignorant- keep us posted and keep your chin up. That totally sucks.

The complaint has to be validated, If They don't arbitrate or show up and leave, and the investigation see's it my way, then I get a Sue them letter. That is when i get the lawyer, I don't know who yet .

dragonfly · Senior Member

I can completely emphasise with this; as I am a full time lecturer my college would very much like to get rid of me. If you have a union get in it get involved. My union has helped me so much. There are Disability laws and HCV is counted as a disability in many countries. If you have to threaten them with Human rights laws because it will cost them more money than to keep you on.

Thom · Member

I have only been aware that I am HCV positive since I was tested while hospitalized for aeromonas last fall although I most likely have had it since the early 1970's. I started treatment 2 days ago.

When I first learned this and confided in a few people, I encountered some ignorant hurtful remarks that caused me to become secretive about it while I wrestled with the question of who to disclose this info to.

I eventually decided to just to disclose to anyone that I commonly encounter in my daily life that I am HCV positive and will be starting treatment that may make me sick for a few months and that I may not be coming around and that would be the reason why.

As far as anyone else, I don't talk about it unless a reason comes up that would make disclosure relevant.

As far as anyone who doesn't like it, they can go jump off a bridge.

wmlj1960 · Moderator

I'm well experienced with being on your end of this subject, especially with being co-infected. I've been treated as 'different' or as 'a threat' many times because of the lack of knowledge/mis-knowledge of others concerning the illnesses HCV, HSV and HIV. It has caused embarrassment, the end of friendships, and even cost me a job on occasions. I guess I'm fortunate these days to have friends who have known me a long time and know about my disease/diseases and accept me as is, and I'm fortunate to also have only limited situations at the present time where disclosure of my 'conditions' can cause a problem for me.

This happened to me: - How about someone that you have been in casual, non-sexual contact with finding out that you are HCV+, then they go get tested and the results are positive, then you get blamed for their infection. Maybe so...Probably not. There are various numbers, percentages etc. from several sources that suggest most people infected with HCV are unaware they have it and I agree. The #'s vary. 75% according to this article. And Anon4This, this could happen with your friend . And if so, I'll bet his past risky sexual behavior will not be given a moments consideration as the possible cause.

But ignorance is a fact of life we must live with, so I agree with what's already been said, and hopefully your situation with the guy who scraped his leg will take care of itself and you will be free of that obstacle. As HCV treatment goes, that deal is an obstacle you certainly don't need at a time when limited stressful life situations is very important.

I know how you feel. You told him and he doesn't remember = your the bad guy, the deceiver, the lier. You know the truth and would give a finger or 2 just to see the look on his face if/when he remembers you telling him. That probably won't happen but either way you have to give it less power over your personal serenity. That deal is so insignificant among the big picture. Let it go, and seek comfort in knowing the truth within your own heart.

So let it go and climb on board with us all as we trudge this road to happy destiny in SVR land. smile

Anon4This · Member

@ huey - wow, i hope you have a good lawyer. If you do not, and are in New England, i can give you a number of a great guy to call. People are so misinformed and ignorant- keep us posted and keep your chin up. That totally sucks.

Anon4This · Member

Yeah, the point I am making is that I know I told this person about it, and we discussed the risks and now they are claiming I never told them about it. Now they are claiming I should have disclosed it, calling me a liar, etc. I think a real friend would have said hey lets talk about it, but instead they went to CDC and slammed me about something I had already told them about, and I offered to get them a letter from my doctor. Instead it was " let's make this all about me". Selfish and cruel. Nobody deserves this ****.

beingsassy · Senior Member

I too am sorry that you were treated so poorly, especially by a friend. Welcome to the forum and I do hope you stay around and give updates on your treatment once you begin. As for who to tell it's a personal decision. I only tell those with a need to know like my partner or close friends that I totally trust to keep my confidence. I also do not share personal items and cover any open wounds.

Ask yourself how much you trust a person before disclosing your status as well as does this person have a need to know and is he or she compassionate in this type of situation. Your health care is your business and unless you choose to disclose is none of their business.

i did have a weird experience when I went to get a TB test this year. I had to ask the tester to wear gloves. I also spoke with the head of the nurses there and disclosed why I requested gloves and asked her why it wasn't done automatically. She said that TB tests have minimal risk for contracting which blew me away. This was the local Drot. Of Health and I couldn't believe that they weren't wearing gloves. I'll keep asking them or anyone injecting me to wear them but I was so upset By that experience, not so much for me but for the nurses. Anyway, that was my weird experience.

gigi

Huey · Guru

After being employed by DHL for 5 years it seem i have too many "restrictions" on the Dr note to go back to work, Now that they got the bill for the meds I just finished taking, It's like ""Get Rid of Him, He Cost Too much"" And i know it is because i have hep c I tell people about it, and encourage testing. I have a discrimination charge now agents them.

Anon4This · Member

Thank you so much for your comments. I am posting from my phone so pardon me if I am screwing it up. You all have confirmed exactly why I think people are reluctant to discuss it openly. The funny thing about this is that I did tell this person about it and even mentioned it when we planned this trip. This person is now saying that I lied by omission when in fact. I reminded them of this in a conversation we had last year. This person has narcolepsy and didn't tell me about it and I had to spend 20 days dealing with someone falling asleep suddenly. This same individual had a severe cold that was so bad that I had to constantly remind them to wipe their nose because copious amounts of angry green snot was dripping from it. I ended up getting it too and was sick for 3 days. Thank God I had Cipro that my doctor gave me in case I got travelers diahrrea. I am so glad that this new treatment is coming out for Hep C and I hope you all pursue it. And I am so grateful to have this forum and people like you to share with. You guys are awesome!

dragonfly · Senior Member

I am open with everybody about my HCV especially at work because of having treatment. Some people avoid me but that is their problem. I have asked for our Health and Safety policy to make sure that I don't cause a risk and although it doesn't cover my condition I have asked for advice from HR. There is a spectacular lack of information which is why people get paranoid. If anyone has questions refer them to the Hep C trust in the UK - their website is comprehensive and nonscary. Good luck. Dragonfly

longld · Senior Member

Get rid of this friend - if not HepC, it will be something else - you don't need this as you start treatment - sorry to be blunt but your health is too important!

I DO disclose to all lab personnel taking blood from me - yes, they should already be protected but I want them ready if something worse happens - those of you that have undergone dialysis know what I mean...

and yes I disclose even though I am supposedly cured......

lee

Anon4This · Member

yawn

-- Edited by Anon4This on Sunday 17th of August 2014 07:13:30 PM

Mugsy · Senior Member

I am so sorry he chose to bash you over something he is ignorant about. It sucks to have clueless people think you are 'unclean' and a risk to society. Well, let me tell you that I have had this for over 40 years, have had two husbands and birthed and nursed three beautiful children and not a one has HepC. I was tested before my first child was born( 1981 before there was a test for HepC) and it came back negative so for over 30 years I had lived thinking I had cleared all on my own. I took no precautions; never giving it a second thought until I got sick in 2000 and my metabolic panel showed something wasn't right . Maybe I was just lucky, but I don't think casual contact will infect anyone. It takes blood to blood exposure to infect another person. Hold your head up high, get rid of fair weather friends and join the rest of us who are waiting for treatment in October. Again, I am really sorry some uneducated turd brain attacked you for no reason.

Tig · Admin

Hello and welcome to the forum! If I could talk to your friend, I'd tell him to relax and cut you a break. I'd also tell him his chance of contracting HCV from you, due to your wound care, is probably about as likely as him catching Ebola after driving past Emory University. It's not going to happen unless you had blood to blood contact at some point during your care. Something tells me that's unlikely to have happened.

We have all had to deal with the question of whom to discuss this disease with. It sounds to me like you have a good understanding of the disease and how it's transmitted. You have the benefit of an informed medical background, so you're ahead of the game in that respect. Unless there is a reason to discuss it with an individual, outside of the reasons you've already mentioned, there really is no point in disclosing it. There is a stigma involved and fortunately the improvements in treatment are reducing the negative views many people had, but they still exist. We have talked about this several times here on the forum. If you use the search function and search the threads on "Stigma", you'll get a bit of insight into it.

It comes down to how you feel about it and how the people you're with will react. Basically its up to you. I discussed it on a case by case basis. Unless there is a need to share your health history with someone else, then there is no need to discuss it at all. Just be prepared with facts anytime you decide to share your history. Good luck!

Tig

Anon4This · Member

I have a general question about what and who to disclose one's HCV status to.

I have had genotype 1 Hep C since 1980. I got it in a blood transfusion back in the days when it was called "Non-A Non-B". I've been really good about following medically for it, and currently see a fantastic doctor at a top tier medical center. I was excited to learn Friday that there is a new drug which will probably be approved in September which can be used in combination with Sovaldi - according to my doctor it is called Ledipasvir, and will be an oral medication I can take with Sovaldi and that is about 95% effective for genotype 1 when the two drugs are taken together. So naturally I am happy and excited to be able to finally take something that has a good chance of being effective. Prior to this my doctor had not wanted me to undergo drug therapy because he didn't feel it would be beneficial, and because I am in very good health otherwise. I am 59 and female.

I have always been very conscientious about my status, and having been in the medical profession, I have had long discussions with my treatment team about what to disclose to others - i.e. family, employers, etc. The rules I was given have consistently been that I could work in any hospital setting that was not surgical (where I could hypothetically nick myself and bleed and transmit it to a patient), that I should of course disclose this to immediate family who I live with, and of course anyone I would be intimate with. I also was told I should of course never exchange blood in any way (i.e. share razors, nail clippers, toothbrushes, etc). I am pretty compulsive about this - if I share food with someone, I always allow them to take a bit before I touch it - i.e. in restaurants, etc). I don't share towels or toothbrushes and I am very conscientious about not passing this. Several of my employers have known that I have am a carrier and I have always been told that I can pass medications, give injections, and do dressing changes, treatments, etc.

I recently took a 20 day trip with a male friend (platonic). This is someone who I have known for many years and who I have talked about my Hep C about. During this trip, my friend, who is a male friend in his 60's, got a bad scrape on his leg and asked me to help him clean it and dress it. We went to a drug store and got peroxide and bacitracin and betadine and dressing materials and each day I would help him clean and dress it, but I was always cautious not to touch it, and I would assist him in cleaning it, painting it with beta dine and covering the wound with bacitracin and a light dressing. It healed up well from what I have been told, as he lives in another city.

Today this person texted me about something unrelated and I mentioned that I would be in treatment for 12 weeks beginning in October. Apparently he forgot that I had already told him I had this many years ago, and that I also mentioned it a few months ago when we planned this trip. He asked me what kind of treatment it was and I told him "you know, the Hep C I have had for 30 years" and was kind of shocked that he did not remember it. He has a lot going on in his own life which I believe distracts him from remembering things, and I won't get into that other than to say he has a ****load of other issues.

Before I could finish telling him how happy I was about getting treatment I got slammed with "why didn't you tell me that you had this...now I have to get tested...I just Googled this and CDC says you can get it from razors and toothbrushes...now I have to be worried about getting this...". Of course we didn't share toothbrushes or razors and I and careful to the point where I made it a point to rinse dishes in bleach and exercised extreme caution in everything I did. Before I helped him with his wound I would wash my hands, use hand sanitizer, etc etc.

So I got screamed at about how he was at risk because I helped him with this wound and told what a horrible person I am and how dishonest and terrible I am and how he was so upset he could not even talk to me about it and how his entire life is now turned around. Before I had a chance to talk about the reality of things; how HCV is transmitted through exchange of blood products, how in a small number of cases it can be transmitted through sexual contact and razors and toothbrushes, how you can't get it through food or dishes or silverware or anything like that...I just got yelled at and told how horrible I supposedly never disposed this...yet I am positive that we talked about it several times.

I'm pissed off because I know this person knew about it and now I'm getting the brunt of probably some other issues, and I can absolutely understand why people don't share this with others, because with all the misinformation out there we get treated like pariahs.

I just wondered if anyone else has had this sort of experience. I recall talking about this issue with this same person several times, and even as we planned this trip. Apparently they don't remember it now, or chose to ignore it because they wanted to take this trip badly and didn't care at the time. But it just sucks that in my happiness to be finally going into treatment for this disorder, I have to have my ass handed to me by someone who wants to make something all about them.

Just and FYI - this is a man who has had many many many casual unprotected encounters with various women over the years and even went to a strange sex convention in Las Vegas where there was swapping, group sex, dom/sub stuff going on. Part of the reason I never got romantically involved with the person. Years ago he met some woman on a train and had unprotected sex with her an hour after meeting her.

As I said earlier, I have been up front about this, most of my friends and family know about it, I'd say anyone who knows me well I have told. The fact that this person conveniently forgot it, and turned it into something to be hysterical about upsets me. This probably will sound like a weird post to most of you, but hey I bet some of you can relate to it.

Any comments will be appreciated.

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