Scared and Alone

[mommaglow]

  How do you tell your family and friends about having Hep C. I got it through work, but I still feel like  leper. I am afraid to touch people and feel alone. I am so sick I can barely move, so I tell everyone my baby has not been sleping. Everyone is noticing a difference. PLEASE I NEED SOMEONE TO TALK TO. I have noone, I love my husband but he has no idea how to support me. I feel completely alone. And I have no idea how to deal with the side effects. I am on the more severe side, I do not know if I can keep working like this.

[meki]

STOP beating yourself up.

That's the first thing.

The second thing is --- IF YOU want to tell people --- then tell them.

Be armed with the facts --- learn all you can about HCV --- read this forum -- read the Janis and Friend's website --- read HCV advocate.

Know everything you can - and then go out and be factual - logical - kind and understand when some folks "freak out".

The first reaction is generally  ---- You did drugs? Or You were a Hooker?

The second reaction is "OMG can I get it from you?"

The third reaction is often pity

The fourth and final reaction is curiosity --- understanding and educating themselves about it.

Me - I was very upfront with it --- with everyone. I talked until I was blue in the face.

I figure - I want people to know that ANYONE can get this disease - that anyone and everyone can have HCV... In fact --- THEY SHOULD ALL GET CHECKED.

You're ok.

You're going through some rough times right now - but you're ok... We've all been there.

Go learn more about this disease --- our reactions --- read the forum for a couple pages back and just go through the posts --- You'll realize you ARE NOT ALONE.

Super hugs,

Meki

[moahunter]

I'd start with family, that's what I did anyway. As to friends, be a bit careful who you tell, at least at first. One of the difficulties with Hep C, is that half the time you find you have to explain what it is to people. There is a lot of confusion with Hep A and Hep B, which can stereotype you as something you are not.

Did you acquire Hep C recently (i.e. are you in Acute stage)? I got quite sick while Acute, but a lot of other people get no symptoms at all. The good news is that while Hep C is not a good thing to have, there are a lot worse things out there. As well, Hep C, because it is common, is being studied and investigated all the time. At the end of the day, we are all mortal. Hep C is a challenge, and I hope you can find people you trust who you can talk to about it. It is not something that I think anyone comes to terms with straight away, but once you do gain an acceptance, you start to realize that your own attitude will to a large extent determine what the experience is going to be for you.

I found a lot of support on this board (a good place to vent if you go through treatment as well), and from family, and I am sure you will too.

[Marcia2202]

I'm sorry to hear about your diagnosis. Welcome to this forum. here you are definitely NOT alone, as we all have this disease and we do not care about how people got it, as to none of us it really matters. So there is no prejudice here. Hep C ins only transmitted through blood, so you can touch and hug and kiss all you want. Nobdy can get infected that way. Especially now, feeling this way, you probably need body contact with friends and family most.

The first thing you must know is, that it is a slowly progressing disease and that it's not the end of your life.

The best way to get on top of this disease is to read as much as you can about it. But when it gets too much, take a break, because there will be a lot of information.

I decided to tell my family and many of my friends, as I know that they would understand what the disease is all about, and if not they would ask. You might not want to tell many people, that is up to you. Some people look down on this disease, so if you do not think you will be strong enough to take their prejudice, it is better not to say. It is totally up to you, IF you want to tell anyone.

I waited with telling my kids and the rest of the family, until I myself had accepted that I had the disease and was able to feel and speak calmly about it.

I had extreme fatigue for about 2 or 3 months and I think that it got better, because I changed my diet and eliminated all kinds of toxins from my diet and skin products, etc.

I think my post is long enough now.

Hugs,

Marcia

[CMcH]

I had known about my HCV for some time now but I did not choose to tell my family until I was about to TX. That went better than I thought. You will find that almost everyone you tell about it knows someone else that has it. I did tell my boss and only 2 of my closest co-workers about it. Even after they are told at work and the family they quickly forget that you aren't at full speed. I have told most of my closest friends and have never had a negative reaction. I have not told everyone because I find my medical stuff is a personal matter.

[Andromedae]

A couple of things:
It's especially difficult when you feel you are alone.  But you're not alone.  You do have all of us to rant on, talk things through with, whatever.  I know, it's not like having a warm hand to hold but you know what?  It's a whole lot better than feeling you have nothing at all.  You do have something.  Try to focus on that if you can.

Also:  I find people react to things much the way that you expect them to.  By that I mean that your own expectations and your own reactions can have a very definite effect on the way people respond to your telling them about your disease.   If you are all apologetic and scared about it people will pick up that something isn't right and they may not know what is wrong but they will react to your own fears and inhibitions as if there was something very wrong.  On the other hand if you are matter of fact about it and present it as just an unfortunate circumstance and life goes on then people will react accordingly.  

Hey, it's just a virus.  It's not a judgment from god about our worth.  Stuff happens and we just got unlucky.  I didn't take drugs and I didn't sleep around and I got this thing as well.  And that really kind of pisses me off.  I mean I never got all the fun yet I'm getting  all the payback.  Frak.  

Keep your chin up and go get cured and if anyone has a problem with that than it's THEIR problem, Love, not yours.

A.

[fretboard]

I certainly hope you are feeling better than earlier, I haven't tx yet so I really don't know what to expect.  I was wondering what kind of arthritis you have and was it a result of an injury or is it RA?  Here is something written by Meki and I think your husband should read it.  Sure not all of it will apply, but it may give him an idea how you feel.  Also, you shouldn’t feel any shame as a lot of ppl get it and they don’t even know how.  You got it through work, there certainly isn't any shame in that.  Sure this virus has a huge stigma attached to it, the more people like you who speak out and let people know what's happening with you, the better you will feel and the better off others will be.  Of course, take it easy and maybe just start with those who are close to you, tell the ppl you don’t want to tell that you’re on chemo.  I bet you that in itself would make you feel a lot better.  God Bless




Stay far enough away that your noise doesn't affect me, or your perfumes or colognes don't overpower me... Or so that you don't hurt my aching bones --- or steal the air that I feel that I can't get enough of. Stay far enough away so that I don't feel like growling at you for absolutely no reason, but for some reason seems to be the most important thing at that moment to me.

Don't talk to me... Because nothing you're going to say is going to make much sense to me in the first place, and it makes me angry that for some strange reason I feel like I'm in a bubble and can't communicate properly back to you and I'm frustrated.

Don't touch me because it hurts - because right now my skin is on fire and it itches and there is nothing I can do to put that fire out or scratch that itch.

Don't play loud music or turn up the tv to blaring - because I'm sensitive to sounds and lights.

If I'm in a dark room - leave the lights off. If I'm in a bright room - leave the lights on. Sudden changes in lighting or temperature take on a whole new meaning for me --- and it's usually painful or very uncomfortable.

If I seem like I can't hear you - or I take forever to answer your question - don't take it personally - I may not be able to push past the fog in my head. I hate that I can't talk back to you - or carry on a full conversation. In my head I'm feeling guilty as it is and frustrated that I can't... Because it seems like it should be there - right on the tip of my tongue, but I just can't seem to find it. And I don't know how to find it. I don't even know where it is. So please don't just stand there waiting for my answer, I can't give it to you.

Hold me when I ask for it - because I need it desperately right then.

Love me no matter how much I yell or scream - or just lie there looking sicker than a dog.

Cook for me - even though I tell you I can't eat it - maybe an hour later I'll be able to taste it - or maybe it will not make me throw up again or I won't be queasy for the next 24 hours and it might be alright.

Know that sometimes no matter what you do - because you're not me, going through these things, you just can't possibly understand it.

Understand that none of this is personal... Or maybe that it's more personal than anything I've ever done before.

Know that I am doing this for you.

[GSDgirl]

Hi, you are not alone at all, as said above you have all of us.  The post from A made a ton of sense.  I did tell people that I see on a regular basis, and did a ton of research to get my facts straight about this epidemic called HCV.  

As Meiki said an antidepressant just might work for you, it did for me.

I ended up with another problem that gave me liquid filled blisters on my hands, it was how I got diagnosed.  YOU will not get it.  Back to my point----my dermatologist held my nasty hand I think to prove to me that I was NOT a leper.  

Your hubby can (and will probably) help you out at home & with the kids, to me that was a ton of support.  

6 months of heII was worth the end result for me.  hopefuly in Sept I will still be UND (undected & after 6 months SVR or cured).

Denise

[IAmTheWalrus]

Well, I see you already have great advice above (IMO). I can't add anything except to reiterate that you are not alone, and you will get through this.

Well, I guess I can add some of my own experience FWIW.

For me, it started out with a cancer diagnosis (HCC) and a transplant. Since TP and beginning of TX, I have told most of the people I work with the situation with HCV and treatment. They don't fully understand, I think, but understand that treatment has many difficulties and have been understanding.

With family and friends I have been totaly up front about the whole thing. It is an issue of education. Most people do not have much idea of what this disease is and what distinguishes it from other types of hepatitis or even other diseases, for that matter. With many people, you just provide the accurate information and they will understand or learn. For others, it can be difficult to learn.

Hang in there,
Brent

[rita863]

you are not alone, we are here!  

peace
rita

[Texas714]

No, you are not alone.  Visit often.  It helps.