we still have a long ways to go

[doll face]

Hey everyone, Just needed to let off some steam. I had a garage sale this weekend at my house and put out some pamplets that I had gotten from my doctor about hep C and awareness. I could not believe some of the responses that I got from people. Quite a few asked me about this disease and my journey through it. A number of people knew someone that had it. But I was shocked at how a few reacted. One older lady for example asked how I could dare put out clothing or anything else to the public when I knew I had this DRUG disease (I caught it from a blood transfusion) not that how anyone gets it make a difference to me, and another said that she couldn't believe that I would actually TELL anyone I had it. Well of course in my polite lady like way I told them both what I thought. LOL You should have seen thier faces. Priceless!!! Anyways I did end up having a very profitable sale regardless of my unspeakable disease (even though I am now 9 months post clear) and have contributed half to a hep c awareness program.  I was just so damn mad though that it is still such a "hush hush" subject that I thought I would do something new to bring it out in the open. What do you think? Was it a dumb idea?

Have a great day !! Kim

[carpedi]

When I was dx in 2000, I was very reluctant to tell anyone and HATED telling my family though I knew I had to. Since I have started tx it no longer matters to me who knows. I'm really lucky in that I'm retired and don't have a job to keep, and I've reached that point in life where I don't really care what people think - if they're true friends, they'll stay that way, if not, I don't want them anyway. Since I've been open about it I've been surprised by how many people respond with sympathy and "oh, my sister,(cousin, friend, etc.), has that, so I know what you're going through". And other people will say, "I've never heard of that. What is it and how did you get it?" With those, I'm very careful to say first thing that they will not get it from me unless they force me to put my blood directly into their bloodstream. And then I tell them that I know more about how I didn't get it than how I did - no tattoos, drugs, transfusions (that I'm aware of), but lots of surgeries, invasive dental procedures, infected manicure/pedicures, and in short, that I don't really know how I got it - I was just in the wrong place at the right time. Most folks seem satisfied with this and so far (knock wood) I've not had a really disappointing reaction.

[mikesimon]

I see your situation more clearly now and can understand your reluctance to disclose. I really hate to say this but maybe non-dislosure would be wise if you can handle it. I treated 3 times the second 2 txs were Peg-Intron and then Pegasys in that order. I don't think my condition would have gone unnoticed while I was on Peg-Intron because I felt terrible all the time. But Pegasys was so much easier on me that I think I could have kept my disease a secret during that course of tx(and it lasted 73 weeks). I guess it mostly depends on how you feel and whether you can get your medical team to follow your directions regarding calls and faxes etc. With the intence focus on medical privacy today a strong directive (and maybe just a tiny vague threat) should insure that communications be directed in strict compliance your instructions. But your ability to keep this a secret ultimately depends on how you feel. I know how conservative  tax clients can be. I worked as an attorney myself but not in that area. I run a small radio station now and the climate is nothing like it was when I practiced law. I doubt I would have been as open about my health issues at that time. If you are feeling okay I'd straighten out the docs etc. and keep everything out of the office. I know that is a difficult way to handle this stressful time and it wouldn't be my preference for sure. But you're in a position to assess the fall-out and if you think that's the best way and aren't feeling too bad it can be done. I wouldn't assume that you're going to start feeling a whole lot worse than you do now since you've treated for a month. I really wish you the best all the way around. Good luck. Mike

[scruffy]

This is not a situation that is the same for all of us. Some have much to lose by being open about this disease. Some ,like myself have little to lose. We all do what we can to educate the wise and tolerate the fools. Don't be further harmed by hcv if you feel you need to stay quiet-it's ok. There are those of us that can be quite blabby without getting fired or losing business or just being treated poorly. Awareness is growing and will continue to grow. WE are in this together and we all bring differing abilities to the forum and in our personal and public lives. frank

[iceboy]

It

[doll face]

Yes, isn't it wonderful to say that I HAD hepatitis c, not that I have hep c. When I went to apply for more life insurance I got the 50+ questions about my health. When it came to the" Have you ever had hepatitis question" I was so happy to have said yes, BUT I cleared it. I still have to do the  blood tests, and physical part yet, so I will let you know what they say about it when I get questioned in person.

I hope everyone else here gets the chance to say " I HAD hep c"

[doll face]

Don't worry you are not the only one who is not very open about it. Sometimes I think that I shouldn't have been ,but then I realize that the majority of the people I do talk (which is anyone who listens LOL) are really surprised at how this disease can be contrated. I have gotten more positive responses from people than negative, but that is just me.

It is not something everyone can do. Your personality, lifestyle, family, friends and job have alot to do with it, my husband is not ashamed but would rather I not publicize it, (he knows I am going to anyways)and my friends were very supportive (more so than family)I did lose one job over having hep c (bar manager, I could have sued to get my job back but why bother) I don't condemn anyone who does not tell people, I for one am just very outspoken.