confidentiality

[CARUU]

Please send your opinions regarding hepc and workplace confidentiality.  I'm struggling with the decision to talk to my manager about going on tx.  On the one hand, my business it my business and I know I don't have to tell anyone.  On the other, if it impacts my ability to do my job, what do I do?  I'm really taking things one day at a time right now.  Thanks, caruu

[JDB1964]

I have informed my workplace regarding my status. I may have experienced some discrimination(a move) but I choose to make the best of it! I am working much closer to home now. I personnally experienced some shamed based feelings when diagnosed but made a concious desicion to not buy the YUCk stereotype, to be open. I have had many experiences when sharing this of people also with this disease tell me of the shame and horror thay carry . Often to the point of not accepting or even trying to treat this disease!I make a point to share this in hopes of helping others and when helping others I help myself!

[jpinthekeys]

Hi Rob and welcome,
   I am a relatively new member, Starting triple treatment in a couple of days.
      There are many members here that may have better information to offer. This is a really old string of posts so you might want to start a new thread with some additional information.

I assume you are Hep C positive ?
Need your biopsy result.
Need information on blood work such as viral load,
genotype.?
any abnormalities in your blood work?
What triple treatment are you talking about, Telapriver or bocepriver?
        There are possible side effects for sure with both treatments but some people do and continue to work while treating.
         There is no shame in having this disease. The decision to tell your employer would have to be up to you but these days some bosses can be very understanding.
          Hep C can be and is a cronic condition just like cancer but fortunatly can be treated with very good results with the new meds. In a few years there will be even better all oral meds on the market so there is much hope that in 2014 or so the new meds will have less side effects and taken for a shorter period.
          So if you can give us more info and some of the more experienced members will have the answers you need.
            Good Luck
      

[1fish2fish]

I"ve always been one to say it as it is. I don't know how I contracted hep C but I do, so what.... I'll treat it and move on. I told everyone work, family, friends because if I get crazy from tx people will understand, that's just me. On the brighter side I haven't skipped a beat with my life 8 wks into tx.

[rob1010]

ok don,t know any thing on the samples of my biopsy.don,t know what the out come of my liver is going to be,but ,can any one tell me what kind of sides affect are we talking about .on taking the meds .i drive a tow boat for a living .am i going to be able to to this and take my meds ??? im not telling any one where i work, and if i have to tell them any thing ,im going to lie and say it cancer.screw them.

[imblessed]

If my ranking is affected by tx than I will be all over someones butt. I rank somewhat high and have been with my company for 15yrs. I think the laws protect us from that kind of discrimination. Dont get me wrong, I dont want to start anything but if I were backed into a corner I think I would have alot of money.

[Revenire]

I work on telecommunications equipment, switches to be exact. This stuff is complicated and one thing I worried about was being able to do the job with the brain fog. I've had some close calls but muddled my way through 9 months of tx and kept working. You can do it too.

[CARUU]

Thanks for the vote of confidence!  I'm going to give it my best shot (did I say shot:~).

I got my scripts for tx today.  I've been advised to get an eye exam, order the medicine a week to 10 days before I plan to start and make an appt. with the nurse for a 1 hour orientation that will include being taught how to give myself the injections.  Because of a prior commitment to a big project, I won't start until after 10/12.  Probably the following Friday night.  Also got my second hepb vaccination today.  I'm sure glad to have all of you to talk to about this!  caruu

[CARUU]

Imblessed, You mention that you knew tx would effect your performance and I have a follow on question.  If tx does impact your performance, do you think that will, in turn, effect your ranking?  I'm currently a highly ranked employee with over 25 years of service.  I hate to think that tx will cause my ranking to go down.

[Steve']

Hi there ... long story short, I go to a monthly meeting organised at my local hospital its a Hep-c support group & very good for us in lots of ways ... Anyway they talked extensively about discrimination, should I tell or shouldn't I tell etc ..
The whole outcome of the meeting last night by about 30 people in attendance was, <b>Do Not Tell</b> unless you have to for some reason. I heard some horror stories from some of the poor people there last night.... Situations where a guy worked for years at the same company & thought he'd come clean & tell the bosses about his HCV, bad move he said because from that moment on things were very different even from so called work buddies, the gossip etc was so bad a the discrimination was so apparent after he "came clean"...  Eventualy they gave him the sad story which boiled down to he got the sack... You think after a few years you build up some kind of work place security.. but remember this no one is irreplaceable..... sad but true.
I wouldn't tell anyone that is outside your close knit family & friends, even most friends don't have to know about your HCV, only your very closest friends need to know. Good Luck

[Revenire]

My company is also big on legal issues and know I could sue them for a tidy sum if they mess with me. They also know I will too.

I have power of attorney, for health care and everything else, over my mother and I have a hard time finding out things from the doctors about her. My co-worker's daughter is in college and the new privacy laws prevent him from getting her grades even though he is paying for it!

[imblessed]

I have recently faced the same issue at my work place. Legally you are not required to tell anyone. I chose to tell my manager because I knew tx would affect my job performance. I also filled out FMLA papers in case I needed to call in sick, which I have, once since starting tx. I think that if you can trust your employer than you should let them know whats going on. The company I work for is really big on issues and legalities so I am confident that they will tell no-one. I hope this helps.

[AK - Hepper]

I'm not strong, just poor. And trying to hold on to my insurance any way I can. It sure was a drag being at work feeling like **** all day, luckily things got slow and they sent me home again about a week ago.
That foreman was a big dummy, I think they educated him up pretty quick, though; and he turned out ok after that first freak-out.

[Revenire]

Contagious as hell? HA HA HAHA HA HA

Tell your boss that my wife of 18 years doesn't have it and neither do my kids.

It's a-holes like that that really drive my RIBA-RAGE into overdrive.

You're strong; I could not imagine working that many hours at this point. Hat's off to you!!

[AK - Hepper]

You can never predict how people will react to news like this. Before I started tx they were pressuring me to work 7/12s and I kept trying to stall them off without telling what the problem was. Finally my foreman told me I needed to work more overtime and just stared at me trying to bluff me out. So I told him:
" Well, I'd like to but this hepatitis is kicking my ass pretty good right now."
He jumped back about 6 feet and hollered really loud: " YOU GOT HEPATITIS?????" So I said, "Yeah, but it's not contagious." Then he says, "Bullshit, That's contagious as hell!!!" So I told him about the blood to blood deal and he just looked skeptical and took off for the office. Well, he came back in about 15 minutes and says, "We still need you to work 6 days a week at least...", so,I managed to get one day off, anyway.
Well, after all that everything has been ok, haven't had any discrimination of any kind, even been laid off and called back a couple of times since. When I started tx I told them I could only work 50 hours a week and they haven't hassled me at all, the big boss has a friend that went thru tx when it was 3 shots a week, so he knows all about the sides, even told me to pace myself. I told him, don't worry I have been!!!

[CARUU]

Wow, this is an amazing amount of experience, perspecitve, and caring.  Thanks!  Like I said, I'm taking it one day at a time for now and your posts have helped me learn and not feel that I HAVE to tell anyone (even though I've already shared this with some close family and friends).  I think seeing how things go with treatment might be the way to go for now.  I go to the doc tomorrow to talk about starting.  I'm ready for whatever it takes to get rid of the dragon!  caruu

[Revenire]

I know everyone's decision is different.

I work for a huge company, in a union and protected by FMLA. As I understand it, by law, the company can not tell anyone about my condition or discriminate against me for advances ... although I am certain that happens.

I've had to take maybe 10 days off, over my 35 weeks into tx. All of those have been protected by FMLA. If the company ever gave me a hard time I'd sue the pants off of them in a heartbeat.

I felt ashamed at first when I was diagnosed: how did I get it? Was it drug use? Will people think I am a "junkie" or some sort of degenerate? Then I realized I don't know how I got it and what's the difference? I used IV drugs once or twice back in the late 1970s but also shared razzors and had a roomate who had hepatitis too. The degree of damage I have -- Stage 3 -- suggests that I have had this for a long time.

I've told my family and my sister-in-law dismissed it by saying "Oh he got that from using drugs" like I should just die or something but I realize she knows little about the disease and has her own health issues to deal with.

13 weeks to go!! I am getting excited to be off these crazy life-saving drugs.

[doll face]

My last job was a bar mananger at a golf course. My boss and I were very close but soon after I told her she suggested that I leave instead of fighting about it I did leave. I had a second job at the time calibrating a  medical research tool and that boss also knew but he was fine with it. When I wasn't feeling well we rescheduled our appointments. When I moved to Tenn and found out I had to start treatments again I was afraid to tell my employer but knew I had to since I would have to travel to Michigan alot for check ups. They have been very good with working around my doctors appointments and since I do my shots on Sundays I work every weekend and take Monday and Tuesdays off it seems to work well for everyone. You might want to see how bad the sides are before you say anything. Good Luck .

[indyjo]

Hi all! I work in a mental health facility. The  majority of people we treat are indigent and homeless. HCV and HIV are common diagnoses.  When we staff these folks and it is shared that they have HCV, I see and hear the reactions of my highly educated colleages. Basically I think that they think YUCK. Well I don't want them to think YUCK every time they see me. I do not plan to tell co-workers. I will tell my boss only if my tx starts to affect my work. Of course this is a personal decision and should be based on individual work environments.

[whybabe]

If your sides are unmanageable you may consider FMLA (family medical  leave act)or disability.  In that cause you would have to let you HR director and or boss start the paperwork.  I chose to tell my employer, not for pitty, but because I wasn't sure if I would be able to work and I wanted the paperwork in order. It's a personal choice! I feel when I share my story I educate people at the same time.  Over 4 million people are infected (and may not it)in this country and I want those that are close to me to know how to prevent the spread if this virus.

Anyway only you can make that chioce...Good luck and God Bless!
Deb

[Merlin51]

I chose to keep my bosses out of the loop.  I work for a small subchapter S corp owned and operated by one guy.   It is a personal choice......

I believe in telluingfamily tho-

[Foreign girl]

I have not told anybody at work, also very few of my friends and family know about my disease and the treatment I am going through. I don't want people to feel sorry for me and I don't want to discuss my condition with everybody either. I also felt like telling my boss at work would harm my opportunities for advancement.

Foreign girl.

[layla]

I decides not to share my tx with any coworkers and it has worked out pretty well for me. Sure, when I am having a bad day I wish everyone knew but for me personally I think it's a private thing. I have a couple friends that share their HCv status totally and are very happy with that decision. I just don't feel that is the way for me and my job. I did end up telling just a couple people after months on tx but we are very close and room together at times when traveling. It's really a personal decision. My sides have ended up fairly mild most of the time so that makes it easier for me to handle it this way. By the way everyone I have told is supportive even if they don't understand it. Good luck to you. LL

[Revenire]

I told my manager right away, and him alone. I later have told quite a number of co-workers about it. I believe laws protect us from action such as dismissal for having HCV (although I can see a company using another excuse to do that).

I agree it is a personal decision. I just got to the point where I didn't care who knew.

[oldhippiechick67]

I have a write up about Americans With Disabilities Act, that addresses Hep C, if you feel you are discriminated against because of the diagnosis.  I am lucky I dont have to work, but I have told a few people, friends, relatives, neighbors and they seem understanding but surely dont come inside the house much!  (thats one way to get rid of those pesky inlaws LOL) but if anyone wants the write up plus the one about how to apply for SSI send me an email:   ***@****
I know how it feels to be discriminated against...like when you knock on someones door and they open it with fear in their eyes, and have that "Hurry, lock up the kids, that SICK women is coming!!" look.    Like Space said, get a note from your doctor, he knows a lot about Confidentiality...at least he should...and he could write it without saying exactly what you are being treated for but that you may have numerous symptoms that could affect your work, and to please be understanding.  My husband said to go to Human Resources for help with something like that, but I think they work for the Company they arent there to HELP us, but he thinks differently, that they work to protect us in the workplace.  Anyone know about that??  OHC