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.

[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