Hepatitis C Support Group

Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.

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ClayB 03/03/2013

Just want to say hello. I just came on board. I learned last week that I am Hep C positive and fortunately, was able to get into a GI Doc on Friday for my viral load. I have an ultrasound scheduled for monday.
Right now, there is a lot of fear of the unknown. Hell, I am scared. I have been emotional. I have a wonderful girlfriend who is a two time cancer survivor and she has been and will continue to be a source of strength.

I do feel embarassed. Before now, I was uneducated about this virus. I am fearful of all my coworkers treating me like I have the plague. People unwilling to shake my hand because of the fear of catching it.

My brother told me that I should never tell anyone outside my household. I disagree. Once I have the results of the viral load test and have started treatment, I am considering standing up at a staff meeting and again before my church congregation and telling them. A) so they hopefully wont ostracize me and B) to educate them.

I would love to know how everyone else handled it.

ConoIpsaro 03/03/2013

Clay, welcome to the group. You've come to the right place. You will find a lot of varying opinions on to handle you situation. I never found it a problem to let it be known that I had Hep C. I just never made it a point to tell people. I think people that don't have it are ignorant to what it is and don't really care. I hope you find the answers that your looking for on how to handle who to tell and who not to tell.
On the bright side there are treatments being developed that could cure you without the side effects of todays treatments. Either way you should see what the doctor has to say. Looking forward to following your progress..

deleted_user 03/03/2013

Welcome to the group Clay. Well truth is it is almost impossable to get though intercouse. Peole get it though blood transfusions before they knew to screen for it. So It is Vary vary sow diese and if you have anything but type 1 it is possible to get feeling like a regurale person again. So go from that first ask the Doc if he can tell you what type you are and what your viral load is and go from there. Dont worry I jhave had it sence the 70's and Im still ticking hhaha Although some may disagree with me haha Later my friend jsut start googling you have a lot to learn but it is out there thanks to the web Later Jim

barbbey 03/03/2013

Welcome to the group--- great place for support and information. I am 59 and 17 weeks into treatment-- and still remember the shock of the diagnosis last summer. I chose to tell my co-workers and friends and am so lucky to be in a place where people are open minded and supportive--- I have many many baby boomer friends who have been tested as a result of my sharing--- and glad to say all, including my former partners, have tested negative. I knew the kind of response I was likely to get-- I am well established in my career and work setting, and work with very diverse and open minded individuals so my decision was easy. I think context matters and it is a very individual decision. You don't need to decide all at once, start with those who are closest to you and who you trust, and take it from there.

deleted_user 03/03/2013

Hi Clay....and Welcome:):):) You have found a great group of folks with lots of information, advice, support, friendship and some music and humor thrown in.

Choosing to tell folks is a real personal decision. If you do decide to do that, I would suggest having some "print outs" to share with folks with a list of FAQ...and a suggestion to get tested:):)

IMHO, one of the Main problems with Hep C is the name.......Hepatitis scares people......they think of unsanitary, easily transmitted things........Hep C doesn't fall into that category.....but try to tell someone ignorant to it.....and its hard getting throu to them:(:(

At any rate......best of luck to you on your journey................Glad ya found us.......just sorry ya have to be here.

WELCOME:):):)

MrOSO 03/03/2013

Clay, we were all scared when we found out, I think that's completely normal.

To tell others or not has been brought up in the past. Lots of opinions, but it all boils down to personal choice. I have told a select few, but generally choose to keep it private. I would do that though no matter what health issue I was facing, though. If you didn't need to know, I probably wouldn't tell you.

ClayB 03/03/2013

Thanks to all of you for just being here and I too hate that you are here. Just thankful for a place such as this where I can share and talk with others going through the same. When my mother passed away I had all of these people who had never even lost a grandparent offering words of wisdom......
I agree that telling or not is a personal decision.
As I said earlier, I go for my ultrasound tomorrow morning and then I don't see the doctor again till April 2. That dead time period of not knowing is not going to be easy.
Even though we all hate being here I look forward to forming lasting friendship with all of you.

peepers21 03/03/2013

Welcome Clay, I too was so frightened when I got my diagnosis in August. I was feeling so alone and stigmatized by those on the 'outside' who knew nothing about HCV. I came here, and found the support, honesty and understanding that I needed. As well as knowledge from those who have been there. I'd suggest checking out "newbie corner" as well. A lot of information can be found in both places.
As far as sharing my Hepc dx with others, I took a month or so to have the shock settle in, and only then did I share with close family and very few close friends.
Like everyone states, it is ones own personal
decision whether to share your Dx or keep mum about it.
Keep us apprised as to how you're faring. Best of luck to you. Jpeeps

MLTTexas 03/04/2013

I shared the news with my family from when I found out, about 15 years ago, educating them, as you said, about Hep C. Then 3 years ago, when I found out I had liver cancer and was on the transplant list, I shared it all with my church family, educating them also, because once people know, they have compassion and they understand, and are helpful. Now I send out updates via email to my family members and to my church. I never did, however, tell any of it to my co-workers until I had to quit to have my transplant. Then I only told them about the cancer and transplant. I was always afraid I would lose my job if my boss new I had Hep C, and being on my own, I had to work.

NZmumof3 03/04/2013

Hi Clay, Welcome to the group, hopefully you wont have it too long.
I like what someone said here about taking some time to get used to it yourself first. Over the years I told people and wish I hadn't, once the information is out there no real control over it. These days I would never tell anyone in the workplace, unless I was doing tx and it was obvious I wasn't normal. My partner and a couple of friends I've had have been wonderful support though and occassionially I will talk about it with someone in my spiritual group.

deleted_user 03/04/2013

Hi ClayB welcome to the site....

For me it was a need to know bases. Everyone I told was supportive and understanding. I knew I couldn't pass it out through a hand shake or even a kiss. It has to be passed blood to blood contact so I knew my family was safe. It is a personal decision though. Give yourself time to learn and absorb the information and it won't be so scary.

Again welcome to ds great bunch of people here.

fishboy316 03/04/2013

Hi Clay! I was the same way. wanted to tell folks so they would know why I was crazy and why I was sometimes slow. Had no trouble from any one but the one I never thought I would! I know of 4 peeps who were tested as a result of me telling them. All negative thank god! I am celebrating 30 years of sobriety tonight at my church and will be telling all as part of my testimony! I have no problem with it. Some do have trouble with the fact that someone may find out. I don't have the time to worry about stuff like that. Anyhow that is a personal decision.
Prayers and love!
Bill

MrOSO 03/04/2013

Hey Bill,

Thirty years of sobriety? In a row?

Just kidding, congrats!

Bob

oOoREBoOo 03/04/2013

Hey, Clay. Many of us have been in the situation as you are now. It is scary! I asked my doctor how long I had to live!!

As you start learning about this virus and ways to live with or treat it, the fear will slowly fade away.

I chose to tell only a few family members and friends. People have busy lives, and I didn't think they needed to know about my health problem. Plus I didn't want sympathy or being treated like I was ill.
After tx, I told everyone!

bestshot 03/04/2013

Hi Clay, you have come to the right place. A lot of very knowledgeable people here. Lots of love as well. I found out 15 years ago that I have it. Went through tx shortly after and failed. I kept it a secret from most for years. When I started tx last March I decided I couldn't do tx and keep it a secret any longer. So I told anyone that asked me what was wrong. It was obvious that I was ill so I was asked often. I don't recall any negative reactions. But I am still suffering some brain fog so it could have happened. Doesn't matter though. If someone has a problem with it that's their problem not mine. I'm glad I have stopped hiding it, in someways it has really helped me with some relationships. All the best to you and I am sure whatever you decide will be the right decision for you.
Hugs
Debbie

ClayB 03/04/2013

All of you have been so great, so supportive. I've been reading through old posts and really picked up a lot of good info.
I still reeling from the shock of it all, I know I will settle down with the help I receive here and at home.

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