How much to share with employer regarding treatment?

[pennylanem]

Hi,
I am gearing up to start treatment soon and I was wondering what people who are employed do about informing their bosses.
I know Harvoni/ Sovaldi/Olysio  is nowhere as horrible as INF/Riba as far as side effects but I'm worried I may need to take a few days off or slow down a bit?
I do telecommute 4 days a week but I do have to make the almost 2 hour commute each way once a week. Even now, those commute days are exhausting and I'm afraid I may not be able to do it weekly during TX.
Should I not share anything with my employer about my treatment?More specifically, I'm talking about letting him know that I may not be at 100% without disclosing details of my diagnosis and/or nature of my treatment.
I work in IT so though the work is completely sedentary, it can be high stress.

[AugustineMama]

I agree with them about not telling anyone you don't have to. I'm sick of it. I have never stuck a needle in my arm, had a tattoo or anything. I laughed when they said I needed to be checked as I had no reason to think I did. I got a blood transfusion in 1990 and I guess that is it, all I know. People don't have a clue.

[AugustineMama]

I worked thru 2 txs. Remember this you are covered under the American With Disabilities Act and they have to work with you. Mine did. That was in 2001 and it was horrible, thrush, shingles, nausea, vomiting, pleurisy, anemia; the old interferon tx. After 5 months it had to be stopped, it was killing me, but they worked with me.

[pennylanem]

Thanks for all your responses. I was NEVER going to disclose my status at work because like I said, very few people even in my family know.
However, I work for a small company and sneaking off for doctor's appointments would not work. I got in trouble for it last week.So I need to say something but I want to keep as many specifics out as possible.
All he needs to know is that I'm going to have more doctor's appointments and blood draws. I in no way want to go into detail so I was looking more for something to say that doesn't leave the door open for questions.
Really all my boss should care about is that I'll be having doctor's appointments and I may miss a few hours here and there. Since I work from home I don't expect to feel super fatigued but since I can't tell how bad the headaches are going to be, I need to be honest that I may not even be able to go on the 5th day since my commute is 1.5hrs each way and that's something that I do have to discuss with him to prepare him for my possible absences.

[hoping4cure]

If you can afford it's best to talk to a lawyer if you think there will be issues before starting treatment. If you find you can't do your job and you then disclose it to your boss they might have grounds to fire you. You're not required to disclose what your being treated for just what the side effects might be or you are experiencing. Once you start treatment and if it gets real bad it can be real hard to get your head together with the fatigue or what ever sides you are experiencing. At the very least it's best to have a plan A and plan B in place just in case you're having a rough time with the treatment or even after treatment is over.

[patra_]

This is so sad.  On the one hand, people get discriminitated against and made to feel less than normal - or judged and found wanting.

On the other hand if we don't face it down, and use it as a teaching moment, one case at a time, then attitudes will never change.  

I did disclose to my boss and then co-workers (we were a small Office).  If anyone had any problems they, wisely, kept them to themselves and didn't treat me any differently BUT I am the first to say that I worked for a special man and with special people.  I have NEVER  concealed my hepc.  If medical problems or discussions of diseases came up, I have been/am very open.  I HAVE seen a few startled looks from time to time, but I have also had people come up to me with questions, seeking information - some even disclosing that they lost someone to hepc, or know someone with it or have it themselves.  Before I retired in 2009, I had become the Office (and other Co employees) go to person for clients or friends, etc., with hepc.  I still have a book from the mid 90s that a client gave me as a thank you for  telling him that hepc was not the end of the world, there was treatment (INF at that time), and someone knew and understood what he was going through, first hand.  My husband was worried that sometime I was too open, but it always worked for me.  

You are all right - each person must deal with this individually, but some way, we must find a method of educating others so that these attitudes can/will change.

I am NOT asking people to do that - there is what should be and what is, but, it is something to think about.  The real world, the economic world is still there, but it is good, if we can change attitudes, even if is one person at a time.  Just my personal take on the situation.

[Livelife777]

Mums the word.  While on Tx you have enough anxiety to deal with.  Could actually affect SVR if faced with additional stressors put into place by a disclosure of Hep C.  Practice self preservation without guilt.  Unfortunately in the society in which we live misery loves company.  You definately do not want your medical condition to be the "Talk" at the proverbial water cooler.
Best to you
......Kim

[keepingOnkeepingOn]

One has to have no choice but to disclose to the boss. The flip side is I did do that and it was fully accepted. I said I had internal bleeding, to test the waters so to speak. The response was good so eventually I said a little more but downplayed the 'virus' issue. I got positive advise and we bonded a bit.
I have used the "need to know" rule until I slipped and started telling people who didn't need to know. That's when it was a negative experience. Now all those who need to know, know it and the rest don't need to know. Stigma's result from the ill-informed.

[hepc4Sandi]

I am a freelance grahic artist. I told 5 people I work with, and they were all very supportive. Two of them had just gone thru breast cancer treatments, so we were already into the mode of let's work through this together. I didn't tell other people I work with, I just told them I had 3 months of chemo-like treatments, and it was successful.

My dentist has known all along, and it has never been an issue. I did tell a couple of what I thought were good friends, and I have lost both of them as friends. This was a good test of who my true friends were. I am glad I am now SVR, and will never have tell any one else about this other then doctors.

Many people are very judgemental, and not compassionate about how serious this disease is, and how hard the treatment is. I was ignorant thinking people wouldn't judge me.

[keepingOnkeepingOn]

Come to think of it, I had to stop disclosing it to dentists because they'd end up referring me out and I was bouncing around from dentist to dentist and not getting my dental work done. Once I stopped disclosing, I got my dental treatment last year. I was treated like one big germ prior when I disclosed it. Now I have a dentist who doesn't know and I'm UD EOT now anyway. I make sure they sterilize everything. I gave them some off the wall reason to do it plus they claim to already do it.

I had disclosed it to a couple people at church and the response I got was a glazed over look in their eyes. Most people have no clue about this deadly disease. It actually took me 2 years before I disclosed it to anyone outside of my household.
Right now I'm never telling another person again. I'm done with that.

[nursehepc]

I think it depends. I only left work early one day on treatment during my 12 weeks on sovaldi and ribavirin, but i work in a small company (less than 20 people) and the increase in Dr. visits during the work week would have been evident and I was not sure how much I would be affected by treatment. I informed my boss and I don't regret it. I was very anxious for awhile and at least he had context to understand why. Jo

[Cheydal]

On week 9 of 12 week treatment , working every day.. Important to get GOOD vitamins and iron in your system.  My Dr gave me huge box of Integra plus.. Iron and Bsupplements. I was having a hard time breathing.. Not a smoker.. The ribavirin makes the red blood cells, explode, so we do not get the normal oxygen we would ..
I got a transfusion yesterday, and feel like I can finish slaying the Dragon. I rest a lot, after work the last few weeks.
I just told my boss that I was on a 12 week antiviral program, and he was fine, asking me if I needed time off. I told him.. NO!! I would do my very best each day!.. I got a great boss!

[flcyclist]

I'm a bit surprised to read so many that feel its better not to disclose your trt to the employer.  This opinion leaned towards the other side a few years back, possibly because of how tough it was to maintain normal duties at work.  I treated about 2 yrs ago with Inf/Riba for 48 weeks and it was a challenge with some very rough spots during the course.  I didn't say anything in my workplace for the same reasons stated above and don't regret my decision.  Its a personal thing, but it can backfire on you if you think people will be understanding.  I didn't want people to feel sorry for me or change their attitudes toward me, so it was best to just keep quite and move forward.  I rarely missed a day of work and mostly just for doc appointments.  With the easier trts today, I'd suspect many will do the same.  Glad to hear these new trts are working and making trt so much easier and shorter.

[48weeks]

I meant to mention that in October of 2013 I found that I had relapsed from triple therapy with incivek. While I was on the Incivek/Telaprevir I commuted an hour each way to work and then worked 8 hours a day. I was lucky because I didn't get the side effects that I heard so many people got from this therapy so we're each different. I never felt the need to take a day off.  Although while on Riba, I think I may have pushed a few friendships to their limit with a little rage.  Flash forward to now, I'm hoping to start Harvoni next month, by GI is trying to get it approved now.  I have heard that the sides are minimal, and I hope that is true because unfortunately I still commute to work.Best wishes for SVR to you and everyone else.

[HealingHearts]

I agree with all on this panel. Until the stigmatization of this disease ends, we will not be able to freely disclose having hepatitis C.

You are fortunate that you only have to worry about one day a week. That should be easy and if you have to tell a white lie, then so be it. But telling your employer will run the risk of discrimination and you need to focus on getting well, not worrying about being harassed at work.

From what I'm hearing, most people on the Harvoni have little to no side effects.

Congrats to you on getting rid of the disease!

[dontworry_behappy1]

Your employer doesn't have to be told.  I wouldn't disclose being treated for Hepatitis C to an employer.  I didn't and wouldn't.  Much discrimination and stigma still associated with Hepatitis C.  People are very uneducated about Hepatitis C and often don't seek treatment because of this fact.   It's sad but true.  

Best to you

[48weeks]

The sad fact for all of us is that on one hand we're dealing with a disease that is slowly killing us, and at the same time it seems like society has tried to make us feel ashamed of ourselves for having this disease. I have told my wife of course, and my siblings. My wife told her parents without my permission, but I'm over it.  I would never tell my employer, and I made the decision when they were young that I would never tell my kids. I would hate for them to feel the backlash I feel like I would feel if they let it slip somewhere that I had it. I don't think the publics perception of this will ever change.

[Dee1956]

Hi I agree with fretboard and Keepinon

I made the mistake of sharing, thinking people would understand, instead I guess they all thought I was an IV drug user.  It is sad that 7 years later it is still that way, if you look on the news that is all they say or what they focus on.

The best thing is that you only have to go in 4 days a week, gosh that is great, the 5th day you could call in sick if you had to.

In hindsight I should have said I had to take some chemo, that seems to get understanding every time.

But....that is just my experience, not everyone's and I did the Interferon, Incivek Riba which is a completely different game.

Congratulations on getting on the Harvoni.  I hope it is as easy as they say.

[keepingOnkeepingOn]

I wouldn't risk being misunderstood either. When in doubt, don't. I'd say outpatient chemo also. Take regular bathroom breaks or see if you can skip being there for the duration of treatment. Just go slow and pace yourself. Stay positive.

[fretboard]

If I were you, I wouldn't say anything to your employer at all.  Been there, done that and it's just not worth the risk of your employer not being empathetic enough to cut you some slack if you need it.  Keep it to a straight out lie if you have to say something.  I mean if you absolutely have to say something, I would say I'm on chemo or something else but not HepC.  The public is plain stupid about HepC and some of them think anyone with HepC is dirty.  Truly, I heard somebody say that before.  Plus some people think the only way you can get HepC is by using needles.  Trust me, the public is really stupid about HepC. About Harvoni and side effects go, I really don't think you'll have anything more than a headache to worry about.  Part of the way Harvoni works is it stops your HepC from replicating itself.  Eventually your viral load will completely stop replicating itself and all the other bad virons will die off.  good luck with the Harvoni!

[wellbeen]

You do not have to tell anything, I am taking Harvoni for 25 days and have no side effects, I feel like I am on aspirin. Very easy , wish everyone can take this treatment.

[cheflady]

Hello and a warm welcome to you.I hope all goes well with your treatment and you don't have too many side effects.As others have stated it is up to you how much or how little you tell your boss. I know alot of people who were on the old triple tx and had to miss some work just told their boss that they had got some liver problems and left it at that. I wish you all the very, very best with your tx and please keep us informed how you are doing. Jules

[almostsixty]

i worked through 12 weeks of Sovaldi, Ribo, and interferon missing only 1 day. Much depends on how physically demanding your job is. I could not afford to not work as that is where my insurance comes from. You are fortunate you can work from home 4 days. Going to work was all I could do. No cooking or housecleaning. Rest when you are not working. If you are dependent on your job you will find a way to get through it. Taking a leave doesn't give you income unless your company offers short term disability. It also doesn't guarantee you the same position you are in now. Work really helped me focus on something other than myself.  It is possible. Try it with a positive attitude and try to get through it. I had a confidant at work who I could trust totally. She helped me a lot. If you can afford not to work, that is awesome!

[flyinlynn]

Hi Pennylanem

You should not have to disclose anything to your employer if you are not comfortable in doing so. Does you company provide FMLA (Family Medical Leave Act) benefits? If your compant is larger than 50 employees you have this benefit.

If you are covered you can contact your HR representative on who and how to contact and use this benefit. It protects your employment and can be very flexible in allowences to adjust your work schedule. It will require your treating doctor to provide supporting documents to this group in your compant to provide these benefits but your employeer / boss does not need to know the circumstances surrounding you adjusted schedule needs again unless you feel comfortable sharing this information.

http://www.dol.gov/dol/topic/benefits-leave/fmla.htm

Good luck on treatment I hope you have an easy time then only side effects listed on the Harvoni prescribing information sheet is fatigue and headachs. And there are some OTC and prescription meds to be avoided.

http://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

Best of Luck
Lynn