Hep C Discussion Forum

Many thanks Deirdre for taking the time and trouble to tell your story and bring this issue into the light. 

It is of course everyone`s personal decision how much information about their diagnosis and tx they disclose and who they disclose it too.  As Steve said there are some situations where you would feel it would be inappropriate and that is something which each person has to decide for themselves.

Before I started tx I lived with the knowledge that I had HCV for many years and was afraid to tell anyone apart from longterm friends because of the prejudice and stigma attached to the disease and because I didn`t know how people would react to the fact that I had been an intravenous drug user in my young days. 

But now, especially since I finished tx and my health is improving and I am getting stronger, I am telling more and more people about it, and feel it`s my obligation to spread the word and try to dispell some of the misleading info that is out there.  And actually I have found that most people, not all, have taken it on board.

Thanks again, Jill xx

Thanks Becca,

Read and understood.

Will still tread my own cautious path though.

I am not immune from Ignorance, oh how my attitudes to others with poor lifestyle choices an illnesses has changed, I have Become Mr Tolerance.

Not everyone will be so Malleable.

Steve

I will sling my two pence worth in here.

I would be in favour of going public with a defined start point, keeping the historical posts hidden, Why?

I opened up on here, told it like it is and how I got this, I would never have done that on a public forum, there are many factors as to why:

1) To protect my Children and Grandchildren, they didn't know Daddy/Grandad was a Junkie.

2) My infection path was 34 years ago, I had moved on from a hopeless case to a supervisor of the Logistics arm of a world wide based Hi-Technology company, would respect for me change? I now could probably cope with discrimination, could my workers cope with ignorance and fear?

3) I have experienced Nurses outwardly scared of me when I had to go to surgery, informing everyone, within my earshot, that I was HCV Positive, I felt sorry for her, but yes, it was hurtful.

4) New relationship, I have never mentioned most of my seedy past, I just listen, and what I hear is total intolerance of IV drug use, Like in "Philedelphia" When Tom Hanks was preparing to out himself, and then heard the subject of the locker room jokes, and decided to stay quiet.

5) I now consider myself a Braver man and slowly, but surely, taking each individual on their merits I am becoming a little more open, more and more people are finding out exactly what has been wrong with me this past 18 months, but I choose the people carefully.

6) At the end of the film "Christmas Carol/Scrooge" Th Coat on a Ghost opens up revealing two children, ragged and vile, They represent Want and Ignorance, above all he warns beware Ignorance.

Ok, Finished.

I now prepare myself for a right old Kicking!

Steve.

I would like to share a story kinda on this subject. In 85 I was diagnosed with non A, non B hep. The doctor at the time, acted like it was no big deal. He didn't say anything about it being life long.

Sometime around 99, I went to a plastic surgeon. I wanted a tummy tuk, as my career depended on my looks. His questionaire, asked if I had ever been told I had hep, and if so what type?

Being ignorant to the types, I answered, "I don't know, but I don't think it was the best or worse one." He said he would have to test me then, because if it was hep c he would not do the surgery. He wanted to charge me a few hundred dollars for the test. I declined, and said I'd get it done at my normal doctor, where it wouldn't cost me.

I remember calling for the results, and getting some nursing assistant, who

 read all my results off like they were nothing. I don't think she realized, one was considered extremely bad, and normally a doctor breaks the news to you more gently, and explains it.

I remember hanging up in a state of shock, and crying, and feeling hopeless.

I pretty much kept the info to myself, figuring if my fellow employees found out, they would freak out.

Then one day when I was still unpacking from moving into the house I had just bought, the E channel was on in the background.

It caught my attention. It was a biography, about an ex playboy playmate, that had to quit, when she found out she had aids...or maybe it was hiv.

She had tried to track down everyone she had slept with, to inform them, and also try to figure out where she got it. Turned out it was a one-night stand with a very handsome bartender, when she was much younger, and before she was a playmate.

Hugh hefner tried to help her, and be supportive, but she had, to move out of the playmate house, and became suicidal.

She thought her life was over. She bought or rented a beach house and had planned to go there and die. She stopped eating, stopped talking to everyone.

Then one day something in her changed. She started thinking about the others out there like her, and how she might be able to help.

She started going out to the streets, and handing out condoms, and clean needles, along with an AIDS phamplet. She ended up running a support group. It was truly an amazing story that tugged at my heart strings. Enough to make me go to the internet and look her up.

I found a pay site, that had some nude pictures of her ( she was still a beautiful woman) and found my way through the maze, without having to become a paid member, to the contact section.

I sent her an email. I remember saying something like " I'm sure you get many emails, both good and bad, and have to put up with some jerks.

But the reason I am contacting you  is to let you know, I just watched your story, and found it very touching.I too, ( although not in the same league as her) made my money off of my looks, and was a single mom, and that I had HCV and had been to scared to tell anyone. Although I wasn't trying to compare hcv with hiv. I wanted her to know,that her story truly touched me, and that her getting the message out, was making a difference, and to keep up the good work."

About a month later she wrote me back thanking me, and apologising for taking so long to answer, and agreeing that most of her messages where from men, and not always nice ones. So she had a lot to weed through.

My message had touched her too. She asked me what my viral count was, and my geno type. Words I had never heard before. She taught me the right questions to ask my doctor.

When I saw my doctor next, I asked him.."what's my geno type, and vl count?"

He didn't have the answers. They had never done a liver biopsy, or geno, or vl test on me, till I pushed, and asked the right questions, thanks to her!

 Because of her, I started getting aswers, and making the doctors who had dropped the ball, do their actual jobs.  I had already had hep c for 16 years, yet the docs had never bothered to do these simple tests.

Once I got the answers, and started studing, I started treatment a year later..which never would of happened without her!

I did tell my manager at work, as she was my best friend. She told me about

 a couple other girls at work that also had it, but were in the closet, and not getting medical attention..therefore they didn't know there was a treatment.

Of course she was not suppose to tell me this.

I realized then when I was getting ready to start treatment the first time, the only way I could help the other girls, was to out myself, as I wasn't suppose to know they had it therefore, I could not approach them.

The only way to get the info to them, that now there is a chance for a cure, was to tell everyone. I even posted info about it on the bulletin board, so they would see the info about treatment, and maybe also get help.

Yes there was one employee who called the company boss, and tried to say she was afraid to be around me, and shouldn't have to...she wanted me fired.

I remember when I found out what she had done, and confronted her, she started to stutter, and said "i don't know, I'm just scared, how do I know you won't cut yourself?" I kinda laughed at her, and told her.." You have worked with me for 8 years and I've had it the whole time..do you have it yet?"

Of course she felt kinda stupid afterwards. I told her " it's okay to not know about it, but next time you have a question, rather than jumping to conclusions, try asking me. People are afraid of what they don't know..the solution to that is to get  in the know, and I'd be more than happy to answer any and all of her questions."

She mellowed out after that, turned out I was more valuable to the company than she was.

 The moral to this story is one brave woman told her story, and because of her, I benifited. I then told my story, after realizing I might be able to return the favor, and help someone else, that was to afraid to talk about it. I could do more good, by outing myself, than by protecting myself, and keeping the seceret.

The other two girls did pull me aside, and they hadn't been to a doctor in so long they had known nothing about a treatment.

Because I came forward.. they ended up doing treatment, and at least one of them was cured.

Sure I have faced prejiduces. Like when they were going to get rid of the clinic across the street from me, and held a patient-board members meeting.

I remember going up and explaining that I had hep c and no longer drove, and sometimes I was to sick to try to do a bunch of bus transfered, not to mention my immune system was not good, and standing around outside in below freezing wheather ( Alaska), while waiting for bus connections, that only ran at certain times, therefore it would be an all day process, I was not healthy enough to do. Any many in the neighborhood needed this clinic.

I did this to try to stop them from closing the clinic in my neighborhood.

What I didn't expect, was there was a reporter in the room.

The next day front page of newspaper it said "Deidre ........ my last name,

has hep c and no car'. That was a shocker!!!! I called the newspaper and they took my name off the internet part of the paper. As back then if you ran my name you would see Deidre... has hep c and no car. You didn't even have to click on the link to see that. Wow! I remember seeing peoples comments, on the page. I remember one saying, they wouldn't want to be on a bus with me, that I'd be putting everyone at risk.

I remember answering and saying, with my low immune system, you are far more dangerous to me!.

My brand new sister in law, suddenly stopped liking me, told my husband to not share a nail cutter with me. Stopped comming to our house, no longered allowed my step-kids, to play with their blood cousins. She did come over once, and looked in our coffee cup cubard, and pulled out a mug, and said "so here is may coffee cup"

 Not thinking, I said " oh is that your's, I didn't know, but it's been my favorite." She no longer wanted the cup after finding out I had drank from it.

 Small loss, as far as I'm concerned! The point is, you will always find a couple of them that will react this way.

People are afraid of what they do not understand. The only way to change that, is us. If we keep it a seceret, they never will learn..making it harder for our fellow fighters, both now, and to come after us.

When really if you start educating people, future hep c people will benifit, and you never know..you may be saving someones life.

Look how many people have hep c..millions. Probably half are afraid to tell anyone. they don't talk about it, they aren't getting follow-up care, they buried their heads in the sand long ago, and haven't bothered to stay current, therefore they don't know there is a cure.....you could change that. What happens next time, you hear someone gossiping and talking crap about someone that has it? Are you going to laugh, walk away, and pray they don't find out you have it too? Or are you going to stand up for that person, even if it means outing yourself. We all have the power, to help others like us. We can be the difference between educating people , so they are not afraid, or letting the stero-typing continue. Making people like us feel ashamed. Or you can do something positive. You have no idea, who has it and who doesn't, and who might benefit from your story. But if you are to afraid to help people understand the truth, than don't be surprised, when their ignornce makes them afaraid of you. This can be the difference between a hate crime, or not.

 For the record, you boss can't fire you for having it. I remember when I got hired on at the hospital, I waited till after my drug teast and I had passed everything, before I told them I had hep c. I did it that way because I wanted them to have no other excuse, they could come up with, if they suddenly decided not to hire me, because of the hep c. Since they basicly had already hired me, as long as I passed all their other tests..which I did.

Then when I told them..they still hired me!