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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Another Sucky Response

Brigid13
Brigid13
Yes, "How did you get it?" is probably the worst. Here's my pick for a close second, "But you look great!" I finally started telling a few people because my fibrosure test came out bad and I'm scared. Also disappointed when I got bloodwork and found my latest alternative treatment didn't work. I'm wanting to let people in, let them know that I'm struggling with something. And their response is a total blow-off. I know I go to the gym and look fit, but that doesn't mean anything. I try to be compassionate -- most people with serious illnesses have more symptoms (And I try not to complain about fatigue or other symptoms I do have. It's boring. Why do that to people). Also, if I tell someone I'm struggling with deciding about treatment and three months later I haven't done it and am still at the gym, they might think I never needed it anyway. Still, that response makes me feel unseen, unsupported, and lonely.
deleted_user
deleted_user
Can you say stigma, stigma. stigma Most people have no clue about hepc. I would only tell people that are only close to you
Trissa01
Trissa01
Me too, only tell close people. Nobody needs to know anybodys personal health business if not intimate relationship. Suffice to say "dealing with a health issue.."
Empathizing with your disappointment about treatment. Brigid, if any of those alternative things worked, we'd all be doing it & cured, and they'd be selling it to us.
Bad test results don't necessarily change how we feel or function. They are useful in preparing us.
You're welcome to come here anytime & talk to people who understand.
Sarpsis
Sarpsis
Okay guys, how about this:

When asked "How we got it....
Start from the ending as Brigid says.
Look them in the eye and say " I'm really struggling on what to do. I feel isolated and afraid and feel that I have no friends who understand what I'm going through. If I had Cancer, it would be different, but really what I have isn't ANY different than having Cancer, most of all the brutal treatment is quite simular to chemo for cancer.

I guess starting to answer their question with your feelings just might stop them right in their tracks. I have found this effective for many people that I have told and they have never asked me again, how did you get it.
joemz20
joemz20
I find this topic interesting.

If you were a firefighter at the world trade center on 9/11, and got hcv from saving someone's life, would you be hesitant to talk about how you got it?

Or is the issue that we don't talk about it because of people's concern that we may be contagious?

I don't talk about it much either, but I don't talk about any health issues with people. Unless you're a real close friend it's just gossip, and why would i want people gossiping about me?
Lpbritt
Lpbritt
Several people have shared this before, but it's a good one to share now.....

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

I understand where you are coming from- so many people assume that if you don't "look bad" you must be healthy... So not true.
Hugs to you- and everyone else, too!!
deleted_user
deleted_user
Maybe we should respond with "were you born with your rude, tackless behavior, or was it acquired?"

don't listen to me today everybody. I'm being very negative. Very upset & hurt today. The upside is that that should thrill some people on here.
deleted_user
deleted_user
A couple of years ago before I got tested, and did not know I had hepc. A friend was over. He said hey Mike I had hepc, but now I am cured. I said cool , and never gave it a second thought. I think I said that because I had no understanding of this disease and what he went through , so why tell people when they don't understand.
NZmumof3
NZmumof3
I liked spoon theory.. I had a friend years ago with Lupus and knew she was on steroids for pain even through she hated the side effects of that with shamefully now I can't remember... but thats basically all I knew. I feel with chronic hep C I would get a spoon for every bad thing I gave up and every extra healthy thing I did and if I went to bed early, but every year that went by and every other health challenge that would happen a spoon would be taken off the table all together and you didn't get the option of earning it back. Still had to keep trying to earn those spoons!

Thanks for your post Brigid I really related to your post..
Brigid13
Brigid13
thank you all for your responses. And Joemz, that was a great question. I like the idea of leading with the emotion, though that feels much more vulnerable. I was leading with the info and seeing, but the other person's response, how safe it was to go further. But it might take more openess to get the response I want. No one I plan to d isclose to at the moment, but for the future...
Type0
Type0
Being vulnerable is only accomplish one thing: it makes you vulnerable. I came to work the other day with the eye infection. Several people were supportive, while some asked me to make sure I wipe the computer keyboard and avoid sitting at the same table or use telephone. I dont have time for this. On another hand, one of our coworkers had skin CA, she did not tell anyone until it started to smell. Everybody was talking about it and give her hygiene advise, till... she die... Many people also believe CA is contagious. Look it up.
Type0
Type0
Being vulnerable is only accomplish one thing: it makes you vulnerable. I came to work the other day with the eye infection. Several people were supportive, while some asked me to make sure I wipe the computer keyboard and avoid sitting at the same table or use telephone. I dont have time for this. On another hand, one of our coworkers had skin CA, she did not tell anyone until it started to smell. Everybody was talking about it and give her hygiene advise, till... she die... Many people also believe CA is contagious. Look it up.
Type0
Type0
Being vulnerable is only accomplish one thing: it makes you vulnerable. I came to work the other day with the eye infection. Several people were supportive, while some asked me to make sure I wipe the computer keyboard and avoid sitting at the same table or use telephone. I dont have time for this. On another hand, one of our coworkers had skin CA, she did not tell anyone until it started to smell. Everybody was talking about it and give her hygiene advise, till... she die... Many people also believe CA is contagious. Look it up.
Type0
Type0
Being vulnerable is only accomplish one thing: it makes you vulnerable. I came to work the other day with the eye infection. Several people were supportive, while some asked me to make sure I wipe the computer keyboard and avoid sitting at the same table or use telephone. I dont have time for this. On another hand, one of our coworkers had skin CA, she did not tell anyone until it started to smell. Everybody was talking about it and give her hygiene advise, till... she die... Many people also believe CA is contagious. Look it up.
Type0
Type0
Being vulnerable is only accomplish one thing: it makes you vulnerable. I came to work the other day with the eye infection. Several people were supportive, while some asked me to make sure I wipe the computer keyboard and avoid sitting at the same table or use telephone. I dont have time for this. On another hand, one of our coworkers had skin CA, she did not tell anyone until it started to smell. Everybody was talking about it and give her hygiene advise, till... she die... Many people also believe CA is contagious. Look it up.