to APK and all: Telling your kids and co-workers about your HCV

APK; you mentioned in an earlier post about your kids knowledge and fear of your HCV.

I've not been entirely honest with my kids who are 12 and 14 years old.  On my first tx I told them that I was taking medications to correct a high iron content in my blood.  They watched me become thin and fatugued....I know that they were worried.

I haven't told them the entire truth for several reasons.  The primary reason is I don't want them to share the information with friends or family; I've kept this very closed amongst only a few people.  

Secondly there was a big Hepatitis A event in our city and they became aware of HepA....I can see the wrong person jumping to the wrong conclusion and the next thing you know their friends won't associtate with them or parents allow their kids to come over, which they do often.

Lastly, this is a really personal thing for me that I don't want spread around.  Right or wrong that's how I feel.

This tx, for co-workers I'm going to tell them that I'm on chemo.  When they ask for what I'm going to say that I'd rather not say and it appears that I''l be fine.

Am I taking the right approach with my kids and co-workers or am I just being a big chiicken?

Comments?

[jmjm530]

Yes, you're a "big chicken" but you may be taking the right approach. I have no idea what I'd do if I were in your spot but all the issues you're agonizing over are ones I'd agonize over as well. Given my weight loss and inability to do any sports/activities during treatment, I also told a few friends I was on "Chemo Therapy" as an explanation. Often people will just let that slide but when one pressed me, I said it was a blood disorder. I got the impression that another thought maybe I was treating for prostate cancer so I just let him assume what he wanted. That said, many here are quite open about their Hep C status. A very personal and individual decision.

-- Jim

[APKhaos]

Put me in the 'big chicken' category, for many of the same reasons. My cover story was a long standing chronic liver disease, for which I was taking a form of chemotherapy, usually followed by the 'don't worry, its not cancer' when I saw the look of dread.

While not entirely straight, this avoided the very problems that you guys described. Since finishing tx and beginning to recover, I've told both children that it was HCV and made a strong point of how infection can happen with a single event. I sure they are not at risk, but maybe they will help prevent their friends from making a big mistake.

Not sure I'd take the same approach with younger children. The younger they are, the more unconditionally honest and guile-free they are. The risk of your 10 year old actually bragging that "my dad has a HCB, and he gives himself big needles and he gets real sick" is very real :-).  

[nygirl7]

I told both of my kids straight out - but they are a little bit older at 16 & 18.

At work most people know I was on "chemo" but not WHY except my boss (and my old dirtbag boss). I figured I'd be honest with them in case I was too ill to work - but I still forced myself to all 72 weeks so I wouldn't chance losing my job.

I was glad I was honest with my kids because they were old enough to handle it and well...I knew they would notice that something was really wrong with me while I did treatment anyway.

They were very supportive and I was glad when I developed the riba rage that I had told them or they would have HATED me at the end of it WHEW!

[madbrad]

I certainly can empathize with everyone here...You can go thru a kaliedescope of emotions as to what to do..It's kind of a big struggle....
  For one,no matter how you or I contracted HCV, there is one thing thats for sure....Most everyone that has it got it from IDU,not everyone but most...Stigma time, How do I explain this to my kid or kids....I can say this is most everyone I tell I have HCV they "KNOW" right off the bat how I got it...It's the most predominant way....
   I for one am NOT going to be held in the bondage of Shame from my past...
I contracted HCV and thats the end of it...Now I inform my kid of how I GOT IT and how to keep from getting it....
    But yes I have said I was on some cancer therapy...I won't anymore..Just remember your a human being and you make mistakes...Oh well thats life.
Better to be up fornt with them now then to be found a liar later,and foment anger and resentment because you felt you couldn't trust THEM. I would only mention this to a teenager..As the younger one have no clue about anything at all.....

[Kalio1]

The beauty of it is each person gets to decide how to handle it and act accordingly. To me, the "right" way to handle it is whatever way you feel is the best for you.


The issue of the stigma of this disease adding yet another layer of trauma for you to face on top of having this disease is a real one. The ignorance and fear can influence your and your children's lives, sadly.
How sad it is that people have to substitute an "accepted" disease (ie cancer) for their real one to receive the compassion and support they so rightly deserve because of the general lack of education about this illness.

[GrandmaA]

This is a very delicate subject and each person has to weigh their own work and family situation. There's not one answer that is best for everyone. My children are grown and married. But they didn't want me around their baby because of my hepatitis C. My doctor had to look up all this information on how you get it for me to give to them and they have gotten a lot better about letting me see and hold her. However, when I was first on treatment I wasn't feeling well enough to see or hold her much. She is VERY big and heavy. Hurts my arm after 15 min.

I know a woman who works in a hospital and doesn't want to tell her boss because she might lose her job. But she's stage one and is not on tx and doing O.K. She's very careful not to infect her patients.

[lab-rat]

I don't have kids, so I can't comment on that...but why don't you wait and see how you feel before you tell anyone else?  Maybe this time around you won't feel as bad or it won't be as noticable.(?)  

I've been fortunate that I haven't had many side effects.  The only people that I told are my husband, my best friend (who also has it), any medical professionals I have to deal with...   and my manager. since I was going to need a flexible schedule due to my being in a clinical trial - which is 2 hours away...but I sort of regret that.  Not that its been an issue, it just seems unnecessary now.

If anybody asks about my excessive Dr. appointments, I blame it on allergies.  Since the vertex pills needed to be refrigerated when we were visiting relatives, my sister-in-law questioned that - but again I blamed allergies.  (I have to laugh now about how I treated those pills like gold, kept them in the fridge, brought them travelling with me (on ice) to the Carribean...and it turns out they were just sugar pills - LOL!)

I'm not trying to say that we have something to be ashamed of or that it should be kept hidden...it's just that once the cat is out of the bag you can't put it back in.  

[Lilla]

With this diagnosis of Hep C, at first I was in denial, insisting it was someone else's bloodwork.  After I grasped the situation and starting learning more, I did accept this.  I have not kept the diagnosis a secret from anyone.   While I don't tell just everyone, my close friends and family, and certain other people do know about my situation.   I don't feel everyone needs to know, but those that I do share this with, I am always seeking knowledge, advice, answers that perhaps someone else may know about (doesn't mean I always take the advice - ha ha)  and perhaps I may be of help to someone else.  Good Luck to You.

[miked]

First off, it's funny to hear that you have a husband.  When I've read your posts I always thought of you as being a guy, don't know why :-)

Tell me more about your lack of symptoms...a big question I have is PEG-Intron v.s. Pegasys.  

When I last treated I was on PEG-Intron which is supposed to kick your a__ hard upfront but you get better as time goes on.  For me on PEG-Intron the first few months weren't that bad but around month four I had this worn out, zombie feeling 24X7.

I've been told that Pegasys is easy upfront but kicks your a__ later in treatment.  I wondering if I'll experience the opposite again.

The trial doc is excellent and told me he would help out with ADs, sleep, and also something to give me energy like provigil.  I'm really dreading tx symptoms again and looking for improvements.

Anything specail working for you?

Mike

[susan400]

There are certain places that I am more cautious about telling.  For example, some people at my current church have a very judgemental look to them.  They have made comments to me about doctors and about mental illness, that have really bothered me.  This is not during the regular church service, but in one of my small groups.  I'm having a hard time w/going back to this particular group.  All I've told them about me is that I have a long lasting liver disease.  Then, they look at me w/this stare on their face like they don't believe me because I look healthy and I am not yellow, so i.e. I must be making all this up?  They tell me that I should just pray and trust God to heal me and are very much implying that doctors and psychologists unless they are Christian are tools of the devil/world.  Then, I get the 'why don't you use herbals comments'.  So, it's gotten easier to just keep this whole part of myself, to myself.  My former church, (which I'm seriously thinking of going back to), was more okay w/physicians.  I still got that 'alternative meds suggestion', but it wasn't necessarily pushed at me.  Since my son is seriously mentally ill and has to live in residential care, it hurts when they say these things.  And also, I feel that God can use any doctor he wants to, to accomplish his purposes, or w/o a doctor if he chooses.  But, I'm not going to just write off physicians. So, this is why I don't feel free to tell some people.  I don't tell alot of people in my condo complex. I feel like it's none of their business.  If someone is close to me, then I will usually tell them. I tell medical and dental professional people and my hairdresser knows.  Susan

[crazycanuck]

when i was dx i couldn't possibly have kept it from my husband, i was too upset and i needed him to get tested. i waited to tell my kids until i had their bloodwork done to make sure they were all neg. i figured they would need all my support to get through it (so no treatment for me at that time) they are all fine. i only told one person at work, (a friend and also our group plan co-odinator) . the rest are a bunch of hypocondriacs. god forbid if you go in to work with a cold!!  when and if i tx i will have to give it some more thought.

[lab-rat]

I can see why you would think I was a guy - being named "rat" and all!  

I've never taken PEG-Intron but from what my doctors have told me in the past, Pegasy is supposed to be much more tolerable.  I've also read that here on the forum from patients who have tried both.  

I'm currently on week 31 of SOC and my worst side effects were from my first shot - some body aches and chills that showed up about 6 hours later and were taken care of with ibuprofen.  I had some itchy skin in the first few weeks also - but that just seemed to disappear as I became used to the drugs.  Drinking lots of water helped the itch.  I also have some brain fog, but that's been tolerable.

I'm not sure why I'm so lucky...I don't follow any special diet but I do drink a lot of water and I go to the gym and exercise every day.  My study nurse seems to think that has something to do with my overall state - she's a bit of an exercise addict herself.  I also did have an initial gradual drop in hgb - by around week 6 or 8 it went down to 10.9 - but it went right back up 2 weeks later.  Now its hovering around 13.  When that happened, the nurse suggested that I eat more red meat and keep exercising.  

Maybe you're right about the Pegasys kicking a__ later in treatment - time will tell!  But so far so good, and I haven't had to take any rescue meds.  Hopefully you'll be lucky too!    I'm hoping the best for you...please keep us posted on how you're doing.

[pigeonca]

I tell everybody, because I've never had a transfusion or shot drugs (although i did just about anything that could be smoked or swallowed back in the 60's and 70's) and yet I have this virus and have probably had it for at 20 years or more.  My reasoning is that if I have hcv, anyone can have it.  I am furious that I was never tested until my liver enzymes went up, and by that time I was Grade 2, Stage 2.  Testing should be automatic, and universal.  So I tell everyone about my situation and recommend that they ask their docs for antibody tests, which are not prohibitively expensive.  It should be as automatic as testing for glucose or cholesterol.

As for the concept that this only comes from IVDU, when people bring that up I ask them if they ever shoplifted as teenagers, or drove too fast, or drove drunk, or any of the dumb stuff kids do.  How would they like it if that trip down Highway 5 at 90 mph suddenly caused them to crash the car three decades later?  Why is cancer more acceptable than hcv?  Surely lifestyle has its effect on cancer, heart disease, diabetes, etc.  Cast the first stone and all that...

[miked]

Thanks for all of your input.

[orphanedhawk]

We all have to decide what is best for us indivisually.
    I've told everyone except for my 89 year old mother. She worries too much about nothing.  My kids were surprised how little they knew about HCV. Ask them about AIDS, that, they know about. They know about AIDs partially because of what they learned at school but also because of our close friends who died from this disease. I wanted my kids to know all they can. Are you teaching your children to be ashamed of a virus? Its your chance to educate them.
  The most interesting thing I found telling people is how many have responded with, "yes, I have friends who have/or had it". One neighbor told me her son died in the 80's and they think it was from HCV. I never knew she'd lost a son.
   I'd love for more people to see we aren't just a bunch of prostitutes, junkies and ex-cons. I'd love for people to see we are their neighbors, friends, fellow church goers etc. How else do people learn if we lie ourselvs?
   I don't know where you live, but I think it is chicken **** to say you are undergoing chemo. Why is cancer okay and HCV isn't?  
   I don't mean you should do something that feels wrong to you for your life. These are just my opinions :)
  

[nygirl7]

Said I for one am NOT going to be held in the bondage of Shame from my past...



You and me both my friend.  It's funny I was always SO uncomfortable about it but now...eh...I try to just be honest about it and then realize NO i am NOT that person anymore.  Cause we ARENT, you know?

sometimes that shame tries to creep back in on me but I usually say hey be proud at how far you've come yada yada beep beep - but it's helped me a LOT having new friends on here who've been able to talk about it normally...it makes me feel like I've really let some secret out of the closet and you know what it wasn't the big dark monster I thought it would be - not at all.

Plus, my kids know all about my past (cause my exhusband is still living in it that way) so it's been educational and hopefully will keep them from getting this disease.

[madbrad]

Susan, dear I can understand how it is....I'm blessed, All my brothers and sisters at church Know Me and are and have been very supportive,I'm in Leadership..Not one person looks down on me,They understand we all haven't lived the way we should have and have reaped consequences of past actions,God has forgiven me....Thats all that matters.
  If He chooses to heal then fantastic if not then thats OK too....Paul had a problem and he besought God 3 times to take it away from him,And God told NO! That his Grace is sufficient...The Greatest Apostle  he said No to...That he had to live with it.....
    My Pastor told me one day,Brad you know how we are you ,me,Mike,Todd,Larry we're all very head strong an self reliant..Headstrong and self reliant is contradictory to God....So Brad, one word comes to me"Reconciliation"....Not reconciling with your wife.But rather reconciling that God may let you keep this to keep you reigned in so your not reliant on yourself and dependant on Him.....I said "SO BE IT"...If thats what he wants.
    So I really don't care what others think.....The Master of the Universe is in control.
All you can do is Pray for those who revile you and talk against you...Intercede on their behalf to God.

[GrandmaA]

I had a tainted blood transfusion in 1977 and had no other risk factors. However, I do not stand in judgement of anyone who got it any other way. Once we are dx we are all in the same boat regarless. I have stopped talking to people about it because everyone thinks you can get it just like HIV or hepatitis B. People think they know everything already so why try to give them the truth? It will come out in time, when there are better treatments.  

[Pdilly]

I agree eache person has to weight all the factors.  SOme people will be understanding and others not.  I told a few choice people.  I did not tell some.  THere was one person that I have known for over 20 years that is now ignoring me since I told her.   Oh well.   I only told my supervisor at work and she stated that she would not tell anyone as it is not their business.  It is a personal decision and each person handles it differently.   There was one person that posted awhile back (brain fog can't remember who it was) that told the people at his work, they moved his desk to a corner and away from everyone.  He felt bad.  I don't remember what happened later.  

[rosebud57]

i initially didn't want to tell anyone but my grown children, eventually, my immediate supervisor at work, later several co-workers, had hardest time saying anything at school because that is to close to my future (near), career and did not want that to interfere, but did tell several professors. told my mom, hardest to tell and last to tell was dad, i felt he would be judgemental.  really it got easier to tell only one person a yoga inst. sort of put distance between me and her and she mentally took a journey (thought she was trying to link to what she knew of it). really she was the only one that i even felt bad for telling. wait wait there was one i really regretted.. someone i was kinda close to works at a groc. store.  after we talked she was really nice and supportive, but later everytime i saw her, she'd give me this sad puppy dog face. it drove me crazy i thought for what purpose do i tell some people (sympathy?) i waited several more times, but eventually managed to tell her i was really going to be okay (don't know what i said exactly) but she doesn't do the puppy dog look anymore.  so my biggest problem is telling anyone who would be related to my career (soon to graduate), as networking happens a lot and if you tell one ---- well then the cat is outta the bag..

[madbrad]

  Man thats a shameful way to treat people.....Ya know when it all comes down to it..IT'S NO ONE'S BUSINESS........It's strictly a need to know basis...I know what it is with US ...
Is that we do want someone to say it's OK...Mostly because we feel so dadgum bad,I mean we're hurting physically and emotionally...But they do not get it,till it hits them.....I am thankful for my faith in God...

[missy60051]

Yes, I think we have all gone through this in our beginnings/denials of
this disease.
The problem is that society  hasn't the knowledge of hepatitis c other than
there's no cure and is contagious.  They think of it as HIV, you remember how we all felt about that in the early 90's.  I remember myself being in my 20's and refusing to take care of a HIV pt. at home with a small baby. I was scared and wasn't going to jeopardize my family with the possibilities. Now that I understand
it's different.

I've always been very honest and open.  When I found out I was scared and in denial,but I did tell a few people.  They're first reactions were to stay away.
I did educate as well as I could.  It worked for some, but still a few.
My children being older thank god I don't have to worry about their friends.
That could be very painful for a family to be efectted by ignorance.

Even my own husband.  That was very painful to think I could loose my husband over this.  Thank god, he understands now.  He still needs to learn a little more in the understanding department of my sx.

I started a real estate class, which since then I had to put on the back burner because of sx. I warned them that I had some medical issues that came up that the meds could make me very sick.  They guessed "oh, is it cancer".  I just agreed
because I certainly didn't need everyone to panic and treat me like the plague.

My husbands family as well.  It hurts.  Not one phone call to see how I am or to route me along.  They've talked with my husband but, never ask to talk to me.  What's up with that?

Quite honestly, it bothers me because I can only imagine what they're thinking.
Sorry, don't do drugs!  It was a tattoo!  NO, it wasn't through sex.  

I'm too sick with the sx and with the fight to svr and and too strong of a person to let anyone bring me down.  

[Willy50]

I have to agree that one should forget the issue about how one got infected.  Basically, we've got it and we have to get over that fact.  I still like hearing how many people got the virus through honorable and innocent ways transfusion while giving birth, serving in the military, and I once heard of a guy becoming infected while saving a person in a car wreck.  Understand, I don't like hearing that they were infected.  I do like hearing the virus becoming destigmatized

I tend to worry less about all the other reasons that people may have gotten infected.  What matters more is what they are doing with their life NOW.  Besides, we've all gotten the questionaire about if we've done drugs.  I personally almost want people to lie when asked this question.  The whole premise is BS. If you had a few medical procedures in the 60's or seventies you would have about the same risk as if you'd snorted cocaine.  One might also have a comparable risk if you'd been out for sports AND had your hair and nails done during the same time.  My point is to not let anyone tell you that this is a disease of drug addicts or sexual deviates.  The myth is so pervasive that some doctors believe it or so I've been told by more that a few members who were treated rudely by an ignorant physician. I mean; do they ask at the same time if you've ever played sports, gotten a manicure, served in the military or how many times you'd been poked by a needle from a licensed dentist or physician?  I may be oversensitive about it but it seems as if they ONLY want to know about the drugs.  The medial profession would prefer that you think you aquired the virus thru illicit means.

I was DX'ed about 3 1/2 years ago.  It scared the **** out of me since I thought it meant that I was doomed and that I'd also infected my kids.  It turns out I'm not as doomed as I first thought.  : )   My kids all tested free and clear of the virus several times.  If I indeed was infected in my wildish 20's my kids lived with me virtually all their lives without becoming infected and all the time my not knowing that I could infect them.

I got mine tested ASAP after I was confirmed positve.  I told the doctor that I wanted them tested.  The doctor simply told them they were testing them for low iron.  I also had them get hep A and B shots at that time too.  I just figured that while they were making holes in them they could make 1 more.  : )

After I got the results they were clear I told them about my status.  They were very cool and I don't believe they told others.  (Kids like to also feel "normal" even more than their parents do)  I tell people as I feel comfortable doing so.  I'm single and have tested the waters very little so far but would certainly tell a love interest about my status.  I tell people whom I work closely with.  I'd tell people I am intimate with.  I think we have to balance our own well being with the possible downsides of "coming out" about our status.  

There is often a flip side that I hear about disclosure.  When we protect ourselves through non-disclosure from people who might hurt us we also insulate ourselves from those who might help us.

good luck with it Mike (and all),
willy

[madbrad]

The next time I GET some goofy Doctor asking me if how I got this,I'm just going to rattle off this list...We'll Doc, I've commited adultery,fornication,cussed,stoled,lied, drank alcohol,talked behind someone's back,falsely accused someone,Not helped someone in need,condescended, done drugs. Now Doc you pick which one you want it to be.

[rosebud57]

I agree with what you say they would like to think that they are never responsible. i wanted to mention something like this in a different post, but some reason held back.  There is a likelyhood that many doctors, dentists offices don't clean their equipment properly.  my hygenist and also chiro who shared he used to date someone who sold medical supplies.  

many times people who clean the equipment don't use their steriziation techniques properly, example they overload the autoclave or whatever the process is.  this reduces the efficacy of the process and the equipment may not be sterile.

i honestly don't know where i could have gotten this. but there were many possibilities of points of entry.

[Willy50]

I have a HCV infected friend who was given tainted blood to replace blood she lost giving birth to her first child.  The blood products came from here;

http://www.geocities.com/bloodcows/ARKBLOODRIVER.html

I recognise that there are some of us heppers that were drug addicts or who may have experimented with drugs in their youth.  There are many groups of people who have NOT done so however.  I see little utility in attempting to increase the stigma attached to HCV thru the selective process of ONLY collecting information about patients drug use (or number of sexual partners; give me a break).  

I personally feel that the medical community has an agenda to shift attention away from where infections may have occurred thru medical practices.  I believe their first line of defense is finding alternative alternate infection causes.

If you look at the military they have fought for years the concept that they infected their soldiers via air gun innoculations.  They prefer that the soldier, their family and the public think that the soldier acquired the infection thru drug use; not thru attemting to serve their country.  Second hand citizens (drug users who infected themselves) often get second hand medical aid.  There has been feeling amounst Vets that it was cheaper to let them die than to diagnose them and treat them.  Once again in the news are headlines about the substandard treatment that we provide for those who have served their country.

Sadly my friend who became infected with tainted blood thru no fault of her own fought for years not knowing why she was so sick.  Even when she found out she was deemed to have been just outside of the "compensation window" that the Canadian government granted for damages.  After suffering with HCV for about 20 years she was granted last year some small token amount of compensation for her completely avoidable infection.  She is still infected, still very sick and still deserves to be treated as a person; not some drug or sex addict.  

Be proud and don't succumb to the ignorance, even that promoted by the medical or governmental establishment.

Willy