Does Anyone Lie About their Dx?

[alagirl]

I just noticed that everyone else asks medical questions (I ask those too), and I am always asking social questions.  Here is my issue.  I figure, and I posted a ? about it to be sure, but I figure I am goiing to be pretty ill during chemo and I am going to need some help from others.  I figure they may notice that I'm sick and that especially people who work with me will ask me something about my health.  I already have focal nodular hyperplasia, so people know vaguely that there was a time that I had an undiagnosed tumor (turned out to be just fnh), but nobody really knows the specifics so I have planned to tell people I am on chemo for my liver due to the tumors I have.  Am I bad for not being forthcoming about the hep C?  I just feel there is such a stigma, and the way I was infected makes it more difficult for me too probably.  I guess I want permission to lie about my diagnosis and tx in order to keep my Hep C status confidential.

[alagirl]

Thanks so much for wondering about me Meki ;)  I feel alone sometimes and you guys let me know that I'm not.  I'll tell ya, this forum and all of you saved my sanity in the first week when I found out I had hep C and also you guys educated the hell out of me and I so appreciate it (and continue to do so - with the education part).  Everyone's early emphasis on the type of testing I needed has made my ability to begin tx (I'll prob receive my meds next week) so much quicker.  My doctor was so impressed that I had already gotten the correct testing done for him.  Today I FEEL so much more positive than the first time I posted on this board.

Normally Meki, I am a very outspoken advocate like you.  Everyone knows totally about my normocytic anemia etc.  But.  I sell food for a living.  And.  People are stupid by and large and I am the sole breadwinner iin my family.  I just can't afford the risk A) and B) I don't plan to HAVE this illness longer than another month or so.  Oh sure, I'll treat anywhere from 24 to 48 weeks but I plan to clear after my first 4 weeks since I'm in the acute phase still (she says like Pollyanna even knowing that her genotype is 1b).  Anyway, that's the PLAN...  (What? I'm a control freak!)

Ok.  So its a bit of a working plan... LOL  Which means that I suppose it could change in progress...  Let's hope not though ;)  IF I don't clear as planned - in the unlikely even that my body disobeys and rebels against me, I think it will make a difference and I will go ahead and tell more people because I will then consider the hep C to be more a part of me.  Right now, I just consider it to be a virus hitching a brief ride, something that is about to be unceremoniously dropped off in a very small desert town with no water or gas money.

[meki]

Ala - I've been meaning to ask about you --- my computer crashed the keyboard at home (thanks to my beautiful 11 year old computer nemesis... all good - I've been sick anyway...) But I'm at work and can't stay on long right now. I should be back up in a few hours - to a day or so... depending on what I have to do.

Anyway - been meaning to check in on you - cause we hadn't heard from you for awhile. So it's VERY good to see you. I often think a lot about all of the people here. Because in a way  - we're very close... almost family. Definitely friends.

So all in all - how are you?

I'm hoping you're doing great - and that you're handling everything. Just know - that I am thinking of you - even if it is way up here in Alaska. LOL!

As to whether I tell anyone...

Hmm.

I'm a BIG ADVOCATE. I tell everyone I meet --- EVERYTHING.

I answer questions - and tell people. If they run away -- I chase them down... And start all over again. LOL!

I keep humour in it. I tell all that I know.

I didn't ask for this disease.... NO ONE DID.

I say the social stigma stops with me. I don't let people act weird. I give them the facts... And I GO OUT OF MY WAY to give people a strange look if they act strange about it... Like "Huh? You mean you don't know anything about it? Sheesh --- YOU BETTER GO GET TESTED... "

I believe the only way this world is going to learn about HCV --- a disease that invades, takes over and destroys human bodies - is by telling people about it and if I don't --- who will?

The general reaction I have is "WOW - I had no clue."

The first question everyone asks is: "How did you get it?"

And after thinking about it --- I used to take offense to that... But heck... I realized people just want to know how they might possibly get it --- either that or they are morbidly curious. So now I just quip:

"Oh I was a huge needle drug user - and I used to work the corner, yanno?"

Now - most folks who meet me - and it's a SMALL town.. know where I work... (I work for the Police/Troopers) LOL! So they all realize I am kidding... But even if I wasn't - that's what I would say.

But I would toss in the caveats... (and I do) I've had dental surgery - reconstructive surgery - been in a serious car accident and had a shot of rhogam. So in reality --- I don't know where I picked up this nasty little bugger. But I got tested... and BANG - POW - BAM!!!! There it was!

And a lot of folks will nod and say - Ooooh - I've had surgery - maybe I should get tested.

And I say - You better! I can't believe you haven't tested for it yet. It's really a nasty disease. You wouldn't believe what it can do to you...

And then I lead off with information about the liver... about what it does - what it controls, etc. How important it is.

And usually by the end of the conversation - no matter how short it is - most folks are coming up and giving me a hug - and promising they are going to go get tested.

A lot of folks stop me in the store and ask me how I'm doing... or when we go out - they'll stop by the table and chit chat.

So - the only people I initially had a problem with - were a group of gaggleheaded girls... here at work.

Mostly just one. At first they put antibacterial sprays in the bathrooms - etc... and at luncheon times - they wouldn't eat anything I brought in.

And at first - it hurt my feelings... but then I realized - the few people in the world that are nasty and stupid like that do not deserve to hurt my feelings. They are the kind of people who whisper nasty things about other people -- the kind of people who in the long run only survive by putting other people down --- that person does not own me... And while she may have everyone fooled into thinking she's professional --- because she points out everyone's downfalls in order to make herself look better... People will learn... and karma comes around... So --- you know what... in the long run - she will get her comeuppance. I dislike people like that... and no matter what you do, they won't change... You don't need them - and you shouldn't give a flying hoot what they think... They are nothing on your radar of the world. Sooooo ---- IF those are the type of people that you are worried about ... STOP WORRYING ABOUT THEM... they exist everywhere... and there is NOTHING you can do about them --- except stop giving them the POWER to hurt you.

So... all in all... that's me...

I know others just can't bring themselves to tell others.

They feel ashamed.

Or dirty.

But... I'm not ashamed... I'm not dirty - I'm a good person... And I'm not afraid.

Many hugs to you.

And strength.

Meki

[lab-rat]

I agree with jmjm, FLGuy and others who advise not to tell.  I did tell my manager at work - only because I was in a clinical trial and needed to alter my schedule to travel regularly to a study site 2 hours away. Fortunately she was very understanding and to my knowledge has not told a soul (including her husband who also works with us).  I regret even doing that because it turned out to be unnecessary...I could have blamed it on something else like allergies.  I was one of the lucky ones who breezed through treatment and nobody could tell...(I missed no work, took vacations, weight, hair, etc. remained the same, blah blah blah).  The only other people that know are my husband, my best friend (who also has it) and any health care professional I have to deal with.  I didn't even tell my parents because I didn't want them to worry needlessly.  

As far as work is concerned - you'd really have to be crazy in today's environment to be out in the open about a life-threatening disease.  In some organizations you can be fired for smoking or being overweight - or be forced to pay higher insurance premiums. Its nobody's business and they may only assume the worst.  But then again you need to gage that for yourself...I don't live in a liberal community like Foreseegood - I'm surrounded by the religious right and I just don't trust 'em.

At least wait and see how you feel once you get used to the meds before you decide to tell anyone.  Good Luck!!

[Frank J. Perrotta]

Everyone I have a personal relationship with knows but everyone else I say I have a liver blood disorder and was on chemo but didnt have cancer - those crazy docs...

I am still sick two years after treatment and the story is the same.

My crazy mom didnt really understand how ill I was during treatment but a year after when I slept 15 straight hours daily for two months she started worrying. My new doc says I show wasting away syndrome and I told crazy mom that so now she is really concerned and tells everyone I am dying. It is better for her that way. Crazy!

frank

[jmjm530]

BBunch:I've decided to tell everyone that I am getting better and I am feeling great.
That's what they want to hear. They don't want to deal with me being sick.
----------------
So very true. Very few really want to deal with anyone being sick more than a few weeks. Funny thing with my family. In spite of the fact that I went through h*ll treating, they never mention anything about that period of my life. Almost like it didn't happen. And when I do make a very infrequent reference to that period, they just go silent. I really don't get it.

-- Jim

[revolution]

This makes me feel much better about my lie to work, the fact that so many have taken the out that I am.  Gossip, well it is just talk, but someone thinking I am dirty or someone being afraid to be around me, or afraid to eat something I made.  Well I just don't have the energy to take care of these people right now, I want to take care of me.

[Forseegood]

I tell on a case by case basis...I do get crashing fatigue at times (which could be exascerbated by the ole menopause too) and sometimes I have to sit down...If i'm in line somewhere, or at the DMV, I'm surely not going to say what exactly is going on w/ me, what for?

Most times like this, or with strangers, whatever, I tell people I have a bad back, everyone can relate to "bad backs" and you say that and boom, instant sympathy and no one pursues anything, unless they want to tell you that you should be doing more "tummy work." lol...

I hate to say this, but human beings are flawed creatures, and unless they've had a lot of exposure to something, or are naturally empathetic, etc...they can be "afraid or suspicious" of things they don't understand....Yes, I am lying in these instances, but I think this is a good "white lie" that helps you navigate through life with less stress, trouble, etc..In some cases I don't want to raise more questions then I have to answer...

But I was at a holistic medical conference and people were asking questions about their particular illnesses, etc...and I just raised my hand and said I had hepatitis C, etc. I got a few stares, but so what, at that point I thought it was appropriate that I say what's really going on w/ me, cause I need answers directly related....I figure it this way, these people aren't in my life, or pay my bills, whatever, what do I care what they think? I'm just the type of person who doesn't much care what other people think, if they have a problem with something like this, then I let it be their problem, I probably wouldn't want to be associated w/ people who are narrow-minded about this anyway. If someone asks to be educated on this, I'm happy to comply...

I've also told pretty much all my family, friends, associates, neighbors, etc...but then it might be easier for me, because I live in a notoriously liberal community, and many people have this who live here, artists, actors, musicians, etc...so maybe it's easier for me here..I find that people are so wrapped up in thier own problems anyway, that even if some do get worked up about this, it's pretty much out of their mindspace in a few hours anyway...maybe I'm getting old, but I just don't care all that much. I do get a little upset over the way patients of all types get treated, but especially us because there is such a stigma. No one *deserves* a disease, and I hope that people get a little more broad minded about many things, including hep c. Just my take.

[alagirl]

Oddly enough, I was able to tell the guy I've had kind of a long term flirtation with and he is was and remains so supportive.  He was worried, get this, about me and my health, not about the disease.  He's also brilliant though, so he just isn't swayed by bs and stigmas.  He's been great.  He treats me exactly the same as he always did.  He doesn't live in my town.  He doesn't have hep C, but he was like, "Well, I looked it up and its only passed through blood transmission so even if we were together at some point, we could just be careful about protection."

I am a long way from feeling comfortable about having sex again, BUT his attitude was at least helpful and made me feel like I at least wasn't an undesirable pariah.  Also, my son told his girlfriend, who lives in Texas - I told my family and his in Texas, since they aren't here with me, and they are all supportive.  Anyway, turns out his gf's mother has been dealing secretly with Hep C for years.  My father and stepmother here have been great, I just worry about them spilling the information.

[JodyLynn]

I lost my mom to breast cancer 5 years ago, she was very young had lots of friends. Some of her so called friends stop calling and coming around, but the thing that hurt her the most was a few of her sisters did the same thing. I think some people are so stupid they think they will catch it just being in the same room with you. In the end my mothers TRUE friends and family were right there by her side. Its been 5 years and ive heard from 1 of her sisters who im very close to, she had 8 sisters 2 brothers. Sometimes i feel dirty even around family with hep c, they dont give me any reason, i just do. I am pretty much alone as far as dating, i dated one man that has hep c but he didnt want me to have treatments so i sent him on his way lol. I dont even try to date anymore, guess i feel like why waste my time when people hear ya got this they run anyway lol.

[B-bunch]

I told my family and they are all supportive. Except my younger sister. I told her and 2 weeks later she started a stupid fight with me and I haven't spoken to her since, that was January 2006. I've called her and left message and she never returned my calls. My very close 1st cousin stopped calling and emailing me the day after I told her, That was in November 2005.
I've decided to tell everyone that I am getting better and I am feeling great.
That's what they want to hear. They don't want to deal with me being sick. I was always the strong one.
Go figure. My advice, tell everyone you are anemic and you have some kind of blood disorder. That's why you can't alway get to work (fatigue due to anemia) and have so many blood test (bruises on your arm)
You will need a small support group. See if the hospital near you might have a HepC support group.

[ShoshanaPNW]

My father didn't tell many people, and that worked for him. My partner has told a lot of people (it was necessary for her work) and has received a lot of support. The question is what's best for you. We have used "chemo" as an easy way to let some people know the quality of her health when, for whatever reason, saying "Hepatitis C treatment" isn't a good idea or is meaningless to the other person.

[Lady Lauri]

Funny, when I first got dx last May it never occurred to me to lie until my sis (big wig corporate job) said ‘DON’T TELL EVERYONE’ and panicked me! Was too in shock to have thought that so fast. Glad she did tho as one of my jobs is with a lot or retiree’s and tho they are ‘friends’, some quite close, ignorance is amongst us everywhere. My plan with them, …… as much as they ‘love’ me, I know a few would do the ‘stand back’ thing and that would hurt me SO….I too made up a story & I don’t lie well. They are all supportive, behind me and as soon as I am done with tx and SVR  :) , than I am going to tell them and tell them WHY I didn’t tell them to start. Figure than they can learn thru me and not put myself thru the hurt, detachment. I agree with flguy, be careful who you tell and can always tell later. I think that how many of us got this is also a feeling of ‘shame’ and much stigma attached to that. People would be blown away to hear that @ me as I am so anti drug for so many years and fight against them, etc. Maybe than they’ll figure out what made me that way!
I have told my closest friends, family and all have been wonderful and not one has divulged to another, BUT I was very sure in anyone I’ve told. Who wants a 'friend' that wouldn't 'stand by' them anyway?
Don't feel bad about this lie, ignorance and gossips make it necessary.
                                                                        LL

[desrt]

You're not a bad person for not being forthcoming. I had the luxury of being able to be upfront with the people I work with and they ended up learning more about genotype, pegylation, and log drop than they cared to know. I understand not everyone can do this, but those of us who can may make easier for the next person that comes along.
We do what we can.

[revolution]

I'm taking your road and not saying anything to most people.  I live in a smaller town in the south and people are very narrow minded and love to gossip (I really honestly love it here).  I don't want the bank teller knowing my personal business, and being afraid to take my money (Not kidding).  I told work that I am missing work during this time because the doctors don't like my blood work and are sending me to a larger medical center for tests.  That way I figure if I have to have treatment I can just say it is the drugs for a medical condition and leave it at that.  
My husband on the other hand has already told his parents and I know they are all abuzz about it (another set of gossips).  My friends on the other hand do know, support and love me and that is all that matters, hubby of course is my biggest supporter.  I am new to all of this, but feel you must deal with it the way you can handle.

[alagirl]

I have one advantage?  LOL How funny!  In that I have been frequently seen as ill at my work because of my anemia.  Everyone knows I am "sickly" - I have had many surgeries.  BUT.  I am in sales and I do a damn good job and I make a good living most of the time so my time is more or less my own.  But when I am ill I have to rely on other people.  EVERYONE knows I have anemia and its no biggie - in fact, my face is so white that they are kind of relieved I have a reason for that besides being a vampire I think.

At any rate, I am going to treat this, at work, as just another illness, but I am not going to be honest about what it is.  That's just the decision I've made personally.  Most of my family does not live here, so there isn't room for it to spill into the community and I am just going to lie and say I'm having chemo for the problems with my liver (which they already didn't want to hear about in detail the first time) and I don't think I'll have much issue.  If anyone is super inquisitive I'll just say its personal or upsetting or that I still need to come to emotional terms with it or some bs.  But, I don't plan to disclose.  

I admire and would normally probably do what HepCD is doing, but I sell food products in a very old-fashioned community and people are TOO ignorant to understand the difference between hep C and hep A.  They'd prob think I was infecting their products.  I just don't want to deal with that stuff emotionally, and go through this.  Lying seems easier.  Now if I thought I was going to have this forever, or if my tx doesn't work, I may feel differently because then it really will have become a part of me.  At this point, I don't really see myself continuing to have Hep C after treatment and I'm in the acute phase.  Maybe I just want to lie to myself because I'm denial.  Who knows.  However,

I'm going to be a liar on this one.  Bottom line.

[Cindy10]

I told my three best freinds, we are pretty tight and they would have figured something anyway.
They were awesome about it. They were a great support system. They never flinched with me.
I never told my family and won't. They would not understand and some would worry and I already finished treatment so they will never know.

Hubby told his whole family and they were all cool about it.

Honestly most people could not even tell. Wait and see how things go and then decide who to tell.

[JodyLynn]

Wow i was just talking to my sister about this today. I use to go alot to Aim and chat been chatting there for like 8 years now, a friend called me yesterday and said Jody its all over AIM that you have hep c. I had only told 2 people who i trusted very much.....ya know what? i could really care less about them people and what they think of me. But in the real world i have told friends and family that i have it, i cant hide it, since i started treatments im so sick at times and white as a ghost lol. Some people do kinda stay away from you when they find out you got it, makes me feel alone at times, hurts my feelings a little..... but i do have a great family, so i feel very lucky.

[debnevada]

Jim is absolutely right. Folks get tired of it.  It's kind of "fun" to have an "ill friend" at first but after about month two it's like...yawn for some folks.

tiedyd:
no question about it, this is not chemo "sorta".....it's chemo, period.
for the folks i don't want to know, that's what i say.

[PSP-n-Me]

I have only told family and very close freinds - I would NEVER tell my employer - the world of law enforcement is not ready for that LOL

[hitherdither]

My husband and I have told only our close family, like his children and my children.  The only other people he's told is two people he's working with and he told them he was having chemo for prostate cancer.  The only reason he told them was because he knew he might not be feeling well or looking well and that would stave off any questions they had about his health.  Of course he told them not to tell anyone because he doesn't want it to get around that he's on any kind of chemo, hep c or not because he doesn't want his aging sick mom to know and it upset her.  He feels that there is a stigma and he just doesn't want to deal with that on top of everything else.  

It's weird for me because I've had a brother that died of Aides and it didn't bother me he had Aides. It bothered me because he was sick.  Same thing with my husband. I don't care what kind of desease he has. He's sick and people get sick. Just putting a name on it makes people stigmatize.  No one says anything about cancer, not afraid of catching it.  But you say HIV, Hep C or Aides they leave the room.  Being sick is being sick to me no matter what you have and things like this will certainly tell you who your real friends are and what family you can really count on.  The others, well, who cares about the others.  You don't need them.

If it makes you feel better to lie about it and keeps the stress down, do it. My husband and you and anyone else shouldn't be stressed over anything like that.  Oh, and we live in the South too in a very small town.

[hepcD]

It is a double edge sword. I told a few friends and told my superindent at work. I work in construction and my job requires me to be able to do physically demanding work.So it was important to tell him in case i became ill an couldn't work sometimes.  My superindent informed me that there are several employees at our company who have or were tx hep c and he knew alot about hep c himself. People knew i was sick but just left me alone or avoid me. some were helpful but at a distance.  As far as my friends they stuck by me . I had nothing to loose. Hep c is just another illness that many don't know much about. Until they are faced with it. The unknown is very scary to anyone. Telling people is your own choice. For me it wasn't a big deal. The people that truely matter to you will understand and life will go on.

[FlGuy]

You do not know how you feel until you begin and get a few weeks in.  You may breeze through treatment.  I'd give it time, you can disclose later if necessary.  You can never un-disclose.

[jmjm530]

Truthfully, just about no one really wants to know, doesn't know (or want) to help long-term, and often once you tell them you wish you hadn't. I told one very close friend I was treating and we no longer have a relationship because he more or less disappeared during that time. Of course I lost other friends I didn't tell because I more or less disappeared. Two friends I kept a relationship with I told them I was on "chemo". I think they thought it was prostate cancer or something. Forgive the cynicism, but that's my experience.

-- Jim

[alagirl]

If you're that sick with tx though, how do you keep it personal?  I mean look, I live in the south.  There is no such thing as personal here.  I already had liver probs that people knew about that had nothing to do with this, so its a natural extension of that, for me, to just say that's what's wrong.  A lot of people in my industry are men anyway, once they know that, they really don't want to go into it.  Nobody but a few of my very close family know the truth.  My fond hope and dream is that my treatment will be successful and then there will be nothing to talk about anyway.