HOW and WHAT to tell your employer and co-workers

[WOG1964]

How come when you mention Hep C people tend to look at you like "OMG don't touch me" I am so confused and scared what to tell my employer. Anyone have and suggestions?

[Dee1956]

That is a really hard one. Are you treating yet?  I would tell my boss if I were treating because someone has to know why you are sick.  As for telling others at work, I think you have to use your own judgement.  Be careful who you tell, you never know what their reaction will be.  I told everyone and in hindsight there may have been a few I should not have told.  There is still so much ignorance out there. It is a tough call.
Best of luck to you

[dontworry_behappy]

Well HectorSF advised me to not tell them.  I have to say that he was RIGHT!
People are very uneducated about Hepatitis C.  They think it only effects
A certain class of people.  

[dontworry_behappy]

As a result I'm not working that job anymore.  It became to hard to explain
my situation.  I decided to just take some time off from working.  I would really like to hear the creative answers people have for dealing with this.  It's a
serious issue.  

[maybe368]

You don't have to tell anyone. It is nobodies business but yours. Any heath care professional that deals with potential blood exposure should be taking universal precautions and, if they aren't, shame on them. I was a street medic for years and I always felt that it was my responsibility to protect myself. It is not as if they are going to take more measures after they know. If so, they are not doing it right...Mark

[Carlhcv]

The stigma really does suck. If you have cancer you get nothing but positive support and understanding. Hep C is misunderstood. Most of us are older and we just didn't worry about blood contact until HIV became widespread. I have only told my best friends. I run my own business in a flea market and I told one close vendor so someone would know what was up if I pass out or something. Maybe you can just confide in one trusted friend at work. If your work is strenuous you will have problems though. Good luck.

[FaithforHealing]

I don't think one is obligated to give an employer the details of their medical condition, but only that there is one. At different times when I needed explanations for my employer, my doctor simply wrote I was under care and receiving medical treatment. My doctor was totally on-board with not specifying the diagnosis, and not just because it was HCV. Unless you are extremely friendly with your employer or co-workers they should not find it odd that you are a private person who chooses not to share that information, everyone I knew respected that and never pressed me. I didn't have a problem with revealing I was anemic and said it was a side effect of treatment.
I did not apply for the federal Family Medical Leave Act so I don't know how specific the doctor has to be on those forms. I'm thinking I would have asked my doctor to specify anemia which was truly the reason I could not function.

[Advocate1955]

My husband hasn't told anyone other than me and our children.
Advocate1955

[indy531]

I filed under ADA-Americans w/Disabilities Act. The only person who may even find out is your HR and they are forbidden to release/talk about your dx w/anyone. No one knew mine and I told people that it made me uncomfortable to talk about it-glad I did. Hector is completelycorrect-there is a terrible stigma that was put out there by the CDC to protect itself from having to disclose it's ineptitude in protecting the public blood supply (blood transfusions, veterans receiving innoculations in the service) is beyond the pale. To this day only 3 peopleknow my dx and I am SVR w/Alt @ 14 and AST @13. Protect yourself and know your rights under the law.

[ceanothus]

It's a very personal decision. So far you've mostly heard from those who don't tell. I'm on the opposite side of the spectrum, having told almost everyone I know. I've even put it on my Facebook page (though limited to friends only). Of the huge number who know of my struggles with this virus, I've had only one case where I felt I was avoided as a result, and even that may have been my imagination. I do live in Northern Californua, which may have a higher level of acceptance or education about the virus. I acquired the virus from a blood transfusion, so in those cases where an individual might have preconceptions about past drug users, they are immediately put at ease by this info about its origins. If you are going to tell people I would recommend coming up with a comfortable storyline for how you acquired it. They WILL ask, and if you have any feelings of shame associated with it, you can bet those will be passed along with your story. Personally I believe if you don't have an easily acceptable story you should just make one up - as simple and close to truth as possible. Transfusions before 1990 or so, dental work, tattoos, piercings, and air-injection vaccinations are all possibilities that apply to many people in the baby boomer generation and none of them carry a stigma like IV drug use does.

I'm very glad I have shared it with everyone, as they have all been another circle of support for me, and in some cases it has resulted in bringing me much closer to someone I hadn't known all that well. I just posted on Facebook about having achieved SVR, and I feel very much buoyed up by all the love and congratulations I've received. One big caveat: I don't have a regular job to worry about. That makes the whole decision far more complicated, and workplace rivalries could make it most unpleasant for some.

[lexx0]

Hi there I only told my boss at work and he was ok with it the reson I told him was that I thought I would take days off work with my treatment but I'm on week 7 and I'm really doing ok and I told a really close work mate which she is good to talk to...so really you don't need to tell nobody it's up to you who you feel comfortable with

[Idyllic]

I used to not tell people. But the more I learned the more angry and disheartened I was at the amount of misconceptions and ignorance there is out there. I am talking about people in our age group and those in the medical profession.

I honestly think the more you learn the less stigmatized you yourself will be and almost feel bound to explain how HCV works to other people. Having said that it is no one's business but yours. I am not the type to get close to co-workers and colleagues so it would be out of character to reveal something of such an intimate nature.

[can-do-man]

If one feels they should say something... How about, I have a blood disorder that is effecting my liver but everything will be fine.......... Good luck.

[flcyclist]

I took the wait and see attitude during my 48 wk trt.  Fortunately, I didn't have to discuss this at work.  Since I'm the boss,  I didn't want any changes in attitude, sympathy, etc. in the workplace. This would have brought unneeded attention which I didn't want,  even if for the right reasons, I didn't want it.  If things went south and I needed time off to deal with sx, then I would have considered pulling some into the know.  But it didn't happen and I didn't miss any time other than scheduled appointments.  The trouble is, once you put the word out, you can't take it back.  This is a very personal decision that only you can decide.  There's no right or wrong way to approach this.  There's some good suggestions above for what to say if you need to say something.  

[Packedsand]

I ve let my co workers know that i have liver disease and that is all.  My doc reduced my workday somewhat so i had to provide some sort of explanation.

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[gerard11]

I am in can-do-mans camp, I have a virus effecting my liver, and I am on medacation to clear the virus. If they want to probe deeper then it is up to you, and how comfortable you are  going further. If you know the people, and they are truly concerened for you, you might give them the whole story. If its a casual acquaintance that's not to concered if you live or die, then maybe leave it at that. There is a terrible stigma out there about Hep C. I have all my stories down pat after telling them for 30 years!

[maybe368]

As I stated above, you don't have to tell ANYBODY, ANYTHING about your personal health problems. They cannot ask and, if they do, you don't have to answer. Obviously, if you are applying for health or life insurance or using sick leave, they can ask why and refuse benefits based on your answer. A general note from your doctor or an answer like, "I have an illness that temporarily  prevents me from doing my job is good enough for sick leave. No specifics are required. Also, your job may choose to fire you, but they may open themselves up for liability. Your health and body are nobodies business, but yours. If you choose to tell somebody, the cat is out of the bag and they can tell anyone the want, with the exception of Doctors and attorneys. I personally don't care who knows, because, in my opinion, nobody is perfect and I don't conduct my life based on the opinions of others. I cut the "chismosos" from my life

[Star971]

I told my GM and then soon it was either over heard and spread like wild fire to the rest of my co workers. It was really hard at first but now everybody knows and there cool with it. You have to make the decision yourself. Like what everybody has said people are very hurtful and don't understand what hep c is. That's when you have to school people! Now I just don't give a flying *#%^ what they think!

[lrup1952]

I knew from having worked with my organization for many years what the reaction would be so I told my immediate supervisor, my director, two friends, and HR (also a friend).  I explained my situation as thoroughly as I could letting them know that while I didn't know what my bodies reaction would be to treatment I needed to prepare them so that my work could be covered.  I told them the arrangments that I had made to try not to let this interfere with my work, as far as it was under my control.  While they don't understand the virus, they have supported me and continue to check on me.  All four of them have a copy of my medical emergency plan should something happen at work.  

I also told my dentist who not only supports me but is doing a comprehensive treatment plan to send to my doctor to ensure that nothing she does will interfere with the tx I am on or cause me any complications.

I feel very fortunate to have the support of my employer, health care workers and friends.  I do believe it is a personal decision because there are times you think you know someone and it backfires.  In my case it has worked out really well.  

[48weeks]

I learned about the negative association with hep C a long time ago. I don't tell anyone I don't have to because it is misunderstood and people automatically associate an unclean lifestyle with people who have Hep C, although I think it may be getting better marginally. The only person in my family that knows is my wife.  I dont tell my kids or siblings. I didn't tell anyone I work with that I was treating and except for some feelings of rage while on the incivek, I think it's gone ok. I'm in my 43rd week and I've never taken time off due to the side effects and I commute an hour to work and back M-F, but I've heard others have not been as fortunate as me.

[colorpal]

My 2 cents is that ONLY because I am "friends" with my head supervisor I felt the need to tell him more than I have the flu... Because of my digestive problems, numerous surgeries and loss time at work already, in 13 yrs,  I thought it best to to tell him so he can decide what People may need to pull Double duty, but again, he can not say WHY.

I have been fortunate to work for a large company and get sick pay for 4 months, by the 6th month my pay drops and My insurance mandates me to sign up for SSI (gov't paperwork) try that while sick and keep what in what order... It makes you sicker..
Things to consider:

#1) no one is allowed to know why you are sick. HIPPA guards that.

#2) Privacy of  HIPPA and that is for the current illness, If you have to sign the papers...make sure Current is circled and initialed.

#3) I just have my first biopsy scheduled, so what I do not know and I will NOT let them imagine what they do know

#4) I will have to see the company medical Dr each month, even if by taxi. and so much stupid paperwork.... an issue I will have to deal with.
AND by NO means do you have to reveal WHAT caused the Hep C..

#5) But Because I work within an office, that makes me close to others, rather than in production, I am LUCKY to be supported by a union...

#6) If anyone lacks the understanding..of Hep or the treatment involved, the company better step up.  Or you can bet,  I will file discrimination charges in a heartbeat, out of (abt 5,000) workers I bet more than just me is infected,  but I will do what is necessary...  That may even help some understand why their body is acting different... IS my prayer if it goes that far.

#8) I am less contagious than someone with the flu, mono, or measles in reality. Unless I bleed...
Be careful and cautious .... Not many know what it is, and their idea is that all Hep C was from needle drug use.

I can retire in 2 yrs, small pension, but will get group rates for medical insurance. That is my fight...

God Bless us all...

[FaithforHealing]

I am curious about your statement that "I will have to see the company medical Dr each month"...I have never heard of that obligation, but maybe it has something to do with continuing to get paid while absent? Places I have worked have always accepted my personal doctor's assessment.

[NTGOG]

Iv told every 1 I know 2 and as I'm a detailed type of person for me it is very time consuming my problem is I can not tell with out going in to detail about the infection now I'm at the stage I don't say any thing I could have gotten it from drug use 30 years ago but now that I'm some what educated about this subject theres a number of ways I could have gotten it over the years and with being 30 years sober honesty is 1 of the most important things to me its your choice but if your honest you will have to expect to have diff reactions from diff people. Good Luck with your treatment young Lady

[colorpal]

Yes, it is correct, Faith...   to retain my pay check.>  we all need one. But it is Also to retain my job. > we all need one of those also.. I am just shy of retirement and cannot take the chance of loosing that...
My Personal doctors assessment is good for up to 14 days... after that,,,
If I do not comply, I am out... I have found that it is NOT the company policy, It is the agreement that my company has with my insurance company...that is who continues to pay me and they run a tight ship.
It depends on the biopsy now...

[FaithforHealing]

That makes sense if one is collecting on a private insurance policy; I assume it was a disability-type policy. I stayed technically employed for months on my personal dr.'s assessments, but was not receiving any compensation...although my health insurance stayed in effect and they paid for it. Thanks