Hepatitis C Community
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Avatar universal

stigma at work

obviously i'm new here, about to go through treatments, and work in a small department . The stigma with hep c is such i don't want to share this with co workers. I know this is nobodys business but is there a similar condition anyone has used to explain the situation as a whole? Thanks in advance for any help on this.....
22 Responses
602261 tn?1252583158
It's really a personal choice. If you work in a medical office then I would tell people if not then don't. There is a stigma attached to this that it's a dirty thing. Most people feel that hep c is contracted through sex or IV drug use or other offensive means so if you don't want to have to explain hep c, what it is, how you get it and so on and so on don't tell people. Some will feel sorry for you, others will stay away from you (ignorance) or other people with accept it. Everybody deals with it differently. My family and some friends know but besides that it's not something I really put out there (except on here of course). Like I said personal choice. If you are comfortable with these people at your work share with them if your on the fence then don't. Educate yourself first and then if you have to educate others around you. When the time comes you will know what to do and if it's right for you good luck.
Avatar universal
From what I've read here over the past few years, sure they're exceptions, but in general you are taking a chance in terms of discrimination if you disclose. And unfortunately, that can extend to friends and family. Personally, I told only a few family members and a couple of friends, because I figured I couldn't hide what I'd be going through plus felt I would need some support. I was right on the hiding part, but the support wasn't there which is very common although, again there are exceptions.

-- Jim
288609 tn?1240096756
You can say you have anemia or a blood disorder, even a Thyroid condition because push comes to shove you could probably end up with one of those. It helps explain all the doc apts, lab work and fatigue. I have personally told my Sup and 4 of my closest co-woker's .
I work at a hospital so a lot of people are quite knowledgeable about symptoms. It is OK to keep it confidential and vague. Unfortunately if you tell someone there is high probability that they will tell someone else. My Sup has blabbed it all over and I have complained and could possibly get him cited but I don't want to. People are fairly understanding esp. family and friends but there is a stigma with it and I don't tell all.
I don't know what your genotype is or how long you will TX for. I am 1a and 40/48 and I look & feel completely different than 1 year ago. It is quite noticeable I have gained 30 lbs because I can't exercise anymore and I am pale with a funky rash all over. People are very good about not mentioning it but who knows what is said behind closed doors.
It really is no one else's business.
Good luck and stay strong
Avatar universal
Most of the time if you disclose that you have this disease you will regret it. I'm sorry to say but "many" will treat you like you have leprosy.
Avatar universal
If you choose not to tell your employer and co-workers, be sure to have something that you can tell them when you have to start visiting the doc more often and when you start to show the physical wear and tear of treatment.  Unless you're one of the lucky ones that has absolutely no side effects, people will notice that something is different with you.

I chose to tell everyone that I work with and there was no negative reactions whatsoever...but, I know this doesn't work for everyone.  

Avatar universal
I have told all of my family, all of my friends and all of my employers/co-workers and no one, not one, has treated me any different now that they know I have Hep C.  In fact, I was so upset thinking people were going to react negatively towards me that I was surprised when all the reactions were more like...oh, I'm sorry to hear that...and then they gave me a hug.  Of course, I made sure that I was the one to tell them and along with that came my explanation of everything I know about Hep C to make sure they knew the facts.

I feel very fortunate that my circle of people have accepted this as well as they have and I'm sorry that there are so many that are evidently still treated as if they have leprosy.  This is one of the biggest reasons for more awareness about Hep C....darn it.
648439 tn?1225058862
I have been trying the thyroid one lately.  Keep it short and simple and only if you have to but you have to be prepared to say something at work if you have symptoms that include dizziness and swaying in the corridors and breathlessness going up a flight of stairs. I have told a lot of people at work about HCV and others about the thyroid thing.  Be careful who you trust, but you have to tell your manager.  I am glad I did because I have been quite well supported at work by my manager with sick leave, light duties, etc.  One co-worker I trusted blabbed, but what can you do about people's lack of integrity?
446474 tn?1446347682
When in doubt... DON'T! I've heard too many stories about people who thought they worked in an environment that was safe, only to find out the hard way it wasn't. Once you tell you can't take it back. So think twice, 3 things, 4 times before you decide. You can't put the toothpaste back in the tube once it is out.

Heck you can always change you mind. But wait to see their reaction first; after you start taking time off to go to the doctor, start looking ill, or have to take days off. Word has a way of getting around work. Remember there are rumors about everyone at work at some level. You may want to tell a friend at work, and then before you know it is the boss, then HR. You don't need any more challenges. Not in this economy. How would you pay for your treatment if you lost your health coverage??? Treatment is very expensive. Just the meds alone are many thousands of dollars a month.

Sure it is "wrong" for people to discriminate against you because you have an unglamorous disease and it is also illegal for companies to find a way get rid of you because of your health condition too. But it happens. Life is not fair. I.E. HCV.

Think about how well you keep secrets. If you don't work for the CIA or NSA you probably want to have something to say to people when they ask you about, your doctor's visits, lab tests, side effects, etc. Pick a disease you might know something about. A disease you will be willing to say you have if it should come to that. As a backup. Something benign. Maybe something heredity.

During treatment you will have enough to deal with. Placate them with something so after time they will lose interest.

446474 tn?1446347682
Additional info-

If you need to take time off for any reason during your treatment, apply for FMLA. The Family Medical Leave Act. Assuming your company is large enough to qualify to be covered by this law.

Don't tell anyone anything. Don't tell your manager or HR person. Maybe in New Zealand it is different, but here in the U.S. this is your right. Just get the form from your HR department. Just ask them for the form (they can't ask you why you want it) and have your doctor sign it. The doctor should only put down that you will be under care for the time you will be being treated. Your doctor should NOT say what you are being treated for. Talk to your doctor about this BEFORE starting treatment. You need to have a plan. To successfully treat you need a plan and a doctor who will support you. You don't want to become too ill to work and find out your doctor will not support you through the entire treatment.

To tell your manager about your illness is...dumb, stupid, insane. Your boss is responsible to the company that gives him his paycheck, not you. During these economic times what if you boss is asked to downsize their department? What if you need to take time off because of your treatment? Do you want to trust that your boss is not going to see you as someone they migh be able to do without?

You don't need your bosses permission to take time off. To take time off for a serious medical condition is your right as an American. It is the law.

408795 tn?1324935675
You really have to be really careful who you disclose this highly personal disease to, I work in a terrible environment as far as stigma goes.  It's in the health field, but there are regulatory officer's there so it really sux as far as tolerance of HepC goes.  PPl think it's a "druggies disease", in my case they are correct as I did use a long time ago.lol  Just the same it's still nobody's business, I suggest you tell nobody.  The ppl who work close with you can sometimes be the worse to tell because ppl gossip.  My experience is, at least in my working environment.  People are alot like children as they behave in a hurtful manner, even if someone is sick as some of us get they can be so cold and judgemental.  No matter who you think you can trust, someone will stab you in the back.  I speak from personal experience.  good luck
412873 tn?1329174455
At the times it is obvoius I am not feeling well, I go with the anemia excuse.  My friends think I am having an on-going anemia issue.  

No one has pressed further.  If they suspect differently, they have taken the hint that I don't want to talk.

I work with family, so I told them.  But honestly, I could have gotten away with not telling and going with the anemia there too. Certainly would explain the nap I take after lunch.

I once made an offhand comment at school about being "sick"....shoulda kept my mouth shut....the woman  I was talking to told me her daughter had HepC and I felt like a hypocrite for not admitting it.  Now I just keep quiet.  

Good luck to you.
Avatar universal
I kinda' side stepped this by telling my employer, a trusted member of managment, that I had started chemo therapy... I let her make whatever leap she wanted.  I needed to explain some of the rage...my reputation had taken a hit... the only thing I could come up with was to tell them I was in chemo...low blow? Yeah, but I don't regret doing it that way.  I get a lot of cushion, much needed cushion.  There have already been lay offs...I'm still there.

My decision helped to add a stigma to this disease. I am sorry for that. But my employer does NOT need that much information about my personal life...
547181 tn?1255146506
Quote from Copyman: Most of the time if you disclose that you have this disease you will regret it. I'm sorry to say but "many" will treat you like you have leprosy.

Well its more than 100% correct. people tend to treat as you are a source of disease for themselves, some will disgrace you, some will be reluctant in mixing up with you and in the areas like Asian countries its also a wrong conception that like AIDS, HCV is also resuls from un-ethical sexual relations. Most of the people even dont want to eat at the table where HCV patient is eating, dont want to touch his things like cup, glass, pens etc etc. They try to blaim you tht you got hcv due to your won wrong doings ..................................... a very very long list ...

I beleive we all are facing this problem upto one extent or other.

I'll advise NEVER tell anuone except to your near one and also tell them its tranmission ways .

Avatar universal
"A Need to Shatter Myths:

The stigma attached to hepatitis C is far less than those infected think – Although 74 percent of hepatitis C sufferers believe that most people think that the disease mostly afflicts drug addicts and people with unhealthy lifestyles, only 30 percent of the public actually holds this belief. Only 12 percent of the general public believes that people like themselves don’t get diseases like hepatitis C."

If you would like to read more on the survey this excerpt is from go to:

The overwhelming majority of those I've talked to outside of healthcare or the HCV community don't have a clue about HCV. And I've worked years of health fairs where I have talked with literally hundreds of people from the general public in an effort to raise awareness of the subject. Hell, half the moms I've talked with think their kids are already vaccinated against it. (It's required for school,right?!) Many I've talked with think you can get it from bad food or water. As this survey shows those who stigmatize the disease the most are the ones who have it.
Avatar universal
Stigma from the medical/healthcare professionals is not just perceived, it is very real. I see this much more often than any stigma from the general public.

548668 tn?1394187222
Years ago my Specialist said to 'tell no-one';  I am still grateful for his advice, despite the difficulties.   I told a couple of family members.    

The same as Port-Ann I told my employer I was doing a type of chemo, and declined to discuss it further (however, I did not work during tx and luckily was granted leave without pay).
Avatar universal
I pretty much told everyone about my condition but ONLY because I wasn't being affected by the meds. I didn't look or feel like **** and I think if you look and feel like **** after you tell someone that something is wrong with you, then there will be a stigma. It's human nature.

If you're acting and looking yourself during treatment, I don't think people will treat you differently. In my case, it seemed as though people appreciated that I wasn't concerned that they knew. And frankly, I don't give a **** what people think.

Bottom line, if you THINK you'll be discriminated against by anyone (trust your gut) then don't bother telling those people.
Avatar universal
GK has a good point. People are pretty shallow and don't care if you're "sick" as long as you look and act healthy :) Ever notice in a hospital who gets all the nurse attention? Its the young guy who isn't very sick and can kid around with them while the dying seniors are pushing the bedside buttons for help. I've been there and seen that. Well, enough Monday cynicism :)

-- Jim
338734 tn?1377160168
I've pretty much told everyone, though I have had second thoughts about whether this was the right thing to do. My advice would be to not tell when in doubt. You can always fess up later, but once you tell, you can't "un-ring the bell", so to speak.

Avatar universal
Don't tell. I thought it would be ok to tell a couple of closest friends/coworkers. Big mistake. I was concerned that the sides would let the cat out of the bag anyway, so I'd be better off being up front with it.  But instead of spilling my guts to all, I held back from some fringe-friends. REALLY glad I did. most folks are woefully unenlightened re this bug and think it's something "dirty" and might jump on them. Or that I'm dying of some rare cancer or HIV or whatever. I feel like my business has suffered as a result of the few people who know holding back work out of fear of me dropping the ball or something. Which only makes it harder. I am now engaged in damage control...working harder, putting on fake "hey, look! I'm just fine!" act in an effort to reassure those people. Not really what I need right now. I really wish I hadn't told anyone.
288609 tn?1240096756
I just saw the movie Milk and it made me feel I should be part of the myth buster. I have been open with family and friends with good results. At work is another story and I don't want it used against me as ram said above.
Avatar universal
Working in a small office they will probably figure out something is going on after about the 5 week and lets face it it’s a small office and gossip goes around anyway as I’m sure you have participated in about others, it is human nature. Hepc is nothing to be ashamed of, *hit happens. Yeah, you’re going to get a little guff from those who are not fond of you but screw them it’s your life you’re taking care of. I told my supervisor after about the 5 week because of the obvious side effects the meds were having on me and the physical changes as well. Not that anybody has asked but I also worked with a bunch of guys and as guys go who cares. I did have head to head combat with this supervisor during that time but the outcome is, I got cured and he got an early retirement because of 0 tolerance policies. This is not to say that there were not some rough spots but you got to get tough in your attitude in who your fighting for and the riba helps but you’ll figure that out in the journey : )

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