Re: STIGMA

[Guest guest]

I totally agree , and it will be a blessed day when all the stigma falls away! <haydenx7@...> wrote:

Give it another 5 or 6 years - there will me so many of us with hepc by then that the stigma will fall to dust because everyone will either have it or love someone who has it.Bet when that happens we see more organ donations too. It's different when it's your mom or your grandpa. Somehow it doesn't matter so much whether or not we brought it on ourselves back in the dark ages when it's someone you love. . . Hang in there kids. We're just at the front of the wave, breaking ground for those who will come after us.love, My sister-in-law acts as if> "I brought it on myself" because of my wild behavior in my youth. The funny thing is she and my brother were right there with me! They both> still drink like crazy, and are sun worshippers (no sunscreen), but. > > We do need to erase the social stigma of this disease. > Jackie

[Guest guest]

I am thinking of getting a tee shirt made that says" Got HCV, how about you?"

That way I can meet the social stigma right on. I am fearless as most of you know, in your face!

LOL

But mostly I want to inform folks. I will let people know that I have HCV because I want to educate them in the correct information. Most folks listen to me and ask questions. Some become my champions. Like the girls across the street from me. They are terrific. I had a doctors appt in Tulsa, and was feeling kind of poorly. One of them told me that she would drive me in my car up there. This is a 4 hour drive from where I currently live. She drove up with me, went with me to get blood drawn, to the doctors appt. And plus out to my home there in Broken Arrow (right out side of Tulsa) to get my pop up camper that I have. LOL

Some friends come for a season, some friends are here for a reason, some stick with you for a lifetime.

I think that everyone should get a tee-shirt that says "Got HCV?" and then on the back have it say "Be like Janet"

like "be like Mike" hee hee get it?

Love

Janet <haydenx7@...> wrote:

Give it another 5 or 6 years - there will me so many of us with hepc by then that the stigma will fall to dust because everyone will either have it or love someone who has it.Bet when that happens we see more organ donations too. It's different when it's your mom or your grandpa. Somehow it doesn't matter so much whether or not we brought it on ourselves back in the dark ages when it's someone you love. . . Hang in there kids. We're just at the front of the wave, breaking ground for those who will come after us.love, My sister-in-law acts as if> "I brought it on myself" because of my wild behavior in my youth. The funny thing is she and my brother were right there with me! They both> still drink like crazy, and are sun worshippers (no sunscreen), but. > > We do need to erase the social stigma of this disease. > I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon

[Guest guest]

Hey Janet check out Liverhope's web site. Your t-shirt

is there. bright red and yellow (our colors).

GOT HEP C? on the front. GET TESTED on the back. I

wore mine walking thru the mall and got lots of looks.

No questions. I guy in a group said why would you want

anyone to know?. He walked away quickly so I didn't

talk to him. But it was an interesting experience..

[Guest guest]

I'll take two!

My sister-in-law acts as

if

> > " I brought it on myself " because of my wild behavior in my

youth.

> The funny thing is she and my brother were right there with me!

They

> both

> > still drink like crazy, and are sun worshippers (no sunscreen),

but.

> >

> > We do need to erase the social stigma of this disease.

> >

>

>

>

>

>

>

> It's a pleasure having you join in our conversations. We hope you

have found the support you need with us.

>

> If you are using email for your posts, for easy access to our

group, just click the link--

Hepatitis C/

>

> Happy Posting

>

>

>

>

[Guest guest]

AWWWW but what about BE like Jackie???loljanet <doc_jade@...> wrote:

I am thinking of getting a tee shirt made that says" Got HCV, how about you?"

That way I can meet the social stigma right on. I am fearless as most of you know, in your face!

LOL

But mostly I want to inform folks. I will let people know that I have HCV because I want to educate them in the correct information. Most folks listen to me and ask questions. Some become my champions. Like the girls across the street from me. They are terrific. I had a doctors appt in Tulsa, and was feeling kind of poorly. One of them told me that she would drive me in my car up there. This is a 4 hour drive from where I currently live. She drove up with me, went with me to get blood drawn, to the doctors appt. And plus out to my home there in Broken Arrow (right out side of Tulsa) to get my pop up camper that I have. LOL

Some friends come for a season, some friends are here for a reason, some stick with you for a lifetime.

I think that everyone should get a tee-shirt that says "Got HCV?" and then on the back have it say "Be like Janet"

like "be like Mike" hee hee get it?

Love

Janet <haydenx7@...> wrote:

Give it another 5 or 6 years - there will me so many of us with hepc by then that the stigma will fall to dust because everyone will either have it or love someone who has it.Bet when that happens we see more organ donations too. It's different when it's your mom or your grandpa. Somehow it doesn't matter so much whether or not we brought it on ourselves back in the dark ages when it's someone you love. . . Hang in there kids. We're just at the front of the wave, breaking ground for those who will come after us.love, My sister-in-law acts as if> "I brought it on myself" because of my wild behavior in my youth. The funny thing is she and my brother were right there with me! They both> still drink like crazy, and are sun worshippers (no sunscreen), but. > > We do need to erase the social stigma of this disease. >

I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon Jackie

[Guest guest]

Don and others...I am so glad to see this topic. It's just what I need!

I have to confess I do feel stigmatized...by myself worst of all. I find myself discussing it as I did this morning in a whispered voice. I feel alot of shame about it. I need to process this. It may be the shame that kept me in denial for so long.

I hate to ask this question...I know it's not a popular one...about the origin of initial infection. I know in the scheme of things it does not matter but for some reason I feel a need to know. I read in Dolan's book as well as online that type 1b is not often associated with IV drug use. Is that true? I have always just accepted that I was infected during those wild and wooly early 70's when I thought I would live forever. It gave me pause to reflect on how on earth I could have otherwise been infected and I remembered a totally forgotten transfusion I had when I was 16 years old. It also mentioned Rhogam shots as a possible cause..had one in 1989.

I just need to admit this somewhere and this is really my only support system right now...why would I feel so relieved if I knew it was from transfusion and not IV Drug use? It's ridiculous. I drank for 20 years which I'm sure had more to do with the progression of this beast than anything else. Drug use for 2...unless the cocaine we now have to include as a possibility is counted. It is much more likely to be from my self destructive behavior than from anything inflicted from an outside source. But..oh! the irony of getting sober and clean for 24 years...a brand new life opening up for me and then BOOM...the past catches up.

Thank you for indulging me while I ruminate here...I know most of you have put this phase of shock and awe behind you. Another issue with the stigma I have is that when trying to explain to the girls who come to help out with my daughter exactly why I have to sleep in in the AM and am unable to get around well....I mean I "look" ok right?.....due to fibromyalgia, hepC and severe back abnormalities I sometimes wish I could just tell them I have something more visible or tangible you know? Maybe I'll start wearing a full body cast and walk around like a penguin.

Thanks again...been anxious to get a little computer time to write you all.

Sorry it's such a self-centered post.

Sherry in Florida

[Guest guest]

Hi Sherry

Im glad I brought up the 'stigma' topic too.

I am really enjoying hearing about all the ways others are dealing with this topic.

I am even thinking about other branches of this topic I hadnt thought of before.

So far I have found 3 catigorys.

[1] Stigma projected on us by society. IE: friends, family, others

[2] How we project stigma on others. IE: doing what we ourselves complain about

[3] How we project stigma on ourselves, IE: personal guilt.

Number [1] is easy...turn our backs on those who throw stones.

Number [2] is alot harder, changing our faults.

Sherry, I think maybe number [3] is the worst, how we guilt trip ourselves for our past mistakes.

How could we know that our bad behavior would come back to haunt us with a disease?

That is IF we were involved with bad behavior.

First off, the way I see it, we were young, lacked foresight, and experiance, not to mention, no one knew about HCV until just a couple of decades ago.

Secondly, it is almost impossible for most of us to pinpoint HOW we caught HCV.

Was it IV drug use, tattoos, blood transfusions, snorting coke, getting an air gun shot in the military, colon scope, the dentist....the list of possibilities is long.

My 88 year old Dad told me that, 'we cant change the past, so why beat ourselves up over the past. We must learn from the past, focus on the present, and plan for the future'.

Today we have HCV. That is our reality.

We must do what we can to think positive ALWAYS, and look forward.

None of us is evil, or bad, or faultless, or super smart, etc.

We are just humans, trying to find happiness and contentment.

We are bound to fall down, and have to pick ourselves up again.

You said it great:

'But..oh! the irony of getting sober and clean for 24 years...a brand new life opening up for me and then BOOM...the past catches up.'

My feelings exactly.

Remember....hindsight is 20/20 vision.

gad

love

don in ks

From: gldcst <gldcst@...>Subject: [ ] Re: STIGMA Date: Friday, December 18, 2009, 11:56 AM

Don and others...I am so glad to see this topic. It's just what I need!

I have to confess I do feel stigmatized...by myself worst of all. I find myself discussing it as I did this morning in a whispered voice. I feel alot of shame about it. I need to process this. It may be the shame that kept me in denial for so long.

I hate to ask this question...I know it's not a popular one...about the origin of initial infection. I know in the scheme of things it does not matter but for some reason I feel a need to know. I read in Dolan's book as well as online that type 1b is not often associated with IV drug use. Is that true? I have always just accepted that I was infected during those wild and wooly early 70's when I thought I would live forever. It gave me pause to reflect on how on earth I could have otherwise been infected and I remembered a totally forgotten transfusion I had when I was 16 years old. It also mentioned Rhogam shots as a possible cause..had one in 1989.

I just need to admit this somewhere and this is really my only support system right now...why would I feel so relieved if I knew it was from transfusion and not IV Drug use? It's ridiculous. I drank for 20 years which I'm sure had more to do with the progression of this beast than anything else. Drug use for 2...unless the cocaine we now have to include as a possibility is counted. It is much more likely to be from my self destructive behavior than from anything inflicted from an outside source. But..oh! the irony of getting sober and clean for 24 years...a brand new life opening up for me and then BOOM...the past catches up.

Thank you for indulging me while I ruminate here...I know most of you have put this phase of shock and awe behind you. Another issue with the stigma I have is that when trying to explain to the girls who come to help out with my daughter exactly why I have to sleep in in the AM and am unable to get around well....I mean I "look" ok right?.....due to fibromyalgia, hepC and severe back abnormalities I sometimes wish I could just tell them I have something more visible or tangible you know? Maybe I'll start wearing a full body cast and walk around like a penguin.

Thanks again...been anxious to get a little computer time to write you all.

Sorry it's such a self-centered post.

Sherry in Florida

[Guest guest]

SherryOh, how I can so totally relate!!I did some IV drugs about 1/2 dozen times in my very early 20's. I never made a very good drug addict because I was so afraid of the needle. So, instead, I went down the muddied path of alcoholism as well. Then, a little over 23 yrs ago, I had what I hope was my last drink!However, when I was first diagnosed, (about 8 years ago) I was told the same thing every body else is told. That even if you only did IV Drugs once in your whole life, it's probably how you got Hep C. Well, I called bullshit to my Dr. when he said that to me. It happens that he was also the Treatment Centres Dr. and was supposed to know a little more about these things. I hotly told him that I thought it was a cop out used by the

system because no one wants to deal with us!! Actually, he quietly agreed with me before I was even finished with him.Then, I went on to tell him that my partner when I quit drinking, obviously had a hepatitis but of course we had never heard of Hep C. I well imagine that I had damaged my liver a great deal with the drinking; but, believed my infection was as a result of him piercing the upper lobe of my ear, directly after he had just used the gun on himself. I remember being extremely ill not long after that; but, had always put it down to the shock my body was going through at that time, from not feeding it alcohol. I even lost about 15 lbs.Well, for about 3 months, I near drove myself crazy because I so badly wanted confirmation of how I could have contracted this virus. The health and government big wigs simply don't want us to know that we may well have been infected because of some dental work or a

minor surgery or the piercings and the tattoos. They like it when the public still views this as an STD or little innuendos about sexual contact. Then, the way has been paved very well, for the public to believe that we are those horrible 70's people that are back making noise again. I have to wonder where the yuppies fit into all of this?? I suppose they are desperately hiding their infection because of the society they walk in now.Do you know that I've even had a friend or two try to argue with ME about this being a STD!! I should learn to just sit back and laugh at them I suppose. Can you imagine how much research I have done on this disease since shortly after my first treatment failure in 2005?? Then, some lay person wants to argue with me?? The other one I pull out during that stupid discussion is - well, if that were true, then why has my husband been so very fortunate this past 20

yrs?? Plus, him with a damaged liver from a car accident and drinking alcoholically until 21 yrs ago. Still, it appears that I wasn't able to pass this on to him sexually.By the way - even though I have done my own type of research and still do, to some extent, I am far from being a know-it-all. I learn new things about this killer just about every day by coming to these sites and talking with others.Ooops, as usual I went on and on!!Take it easy Sherry and as I've only recently learned, laughter is really the very best medicine.Gloria

Don and others...I am so glad to see this topic. It's just what I need!

I have to confess I do feel stigmatized. ..by myself worst of all. I find myself discussing it as I did this morning in a whispered voice. I feel alot of shame about it. I need to process this. It may be the shame that kept me in denial for so long.

I hate to ask this question...I know it's not a popular one...about the origin of initial infection. I know in the scheme of things it does not matter but for some reason I feel a need to know. I read in Dolan's book as well as online that type 1b is not often associated with IV drug use. Is that true? I have always just accepted that I was infected during those wild and wooly early 70's when I thought I would live forever. It gave me pause to reflect on how on earth I could have otherwise been infected and I remembered a totally forgotten transfusion I had when I was 16 years old. It also mentioned Rhogam shots as a possible cause..had one in 1989.

I just need to admit this somewhere and this is really my only support system right now...why would I feel so relieved if I knew it was from transfusion and not IV Drug use? It's ridiculous. I drank for 20 years which I'm sure had more to do with the progression of this beast than anything else. Drug use for 2...unless the cocaine we now have to include as a possibility is counted. It is much more likely to be from my self destructive behavior than from anything inflicted from an outside source. But..oh! the irony of getting sober and clean for 24 years...a brand new life opening up for me and then BOOM...the past catches up.

Thank you for indulging me while I ruminate here...I know most of you have put this phase of shock and awe behind you. Another issue with the stigma I have is that when trying to explain to the girls who come to help out with my daughter exactly why I have to sleep in in the AM and am unable to get around well....I mean I "look" ok right?.....due to fibromyalgia, hepC and severe back abnormalities I sometimes wish I could just tell them I have something more visible or tangible you know? Maybe I'll start wearing a full body cast and walk around like a penguin.

Thanks again...been anxious to get a little computer time to write you all.

Sorry it's such a self-centered post.

Sherry in Florida

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[Guest guest]

DonIn AA we call it - screw guilt!! Those that can not get past their personal guilt, are bound to repeat it. That is not to say that we can not allow ourselves to just shrug if off with some silly quote. We know that if we try that one, then we are definitely bound to repeat it. Ohhh I just shutter at that thought!!!Please look at the 12 steps of AA or NA or any of the other A's. You were almost quoting the first 4 steps there. It is sooo very true - none of us, not one single person, can go back and change the past!! In fact, I think I would have missed most of my life lessons were I able to do that.I never could figure out "Why Me", why was I an alcoholic?? A distant voice calls

down to me and says "Why not"??? So, I had to get down to doing some extremely difficult life changing things, in order not to fall back into my old patterns. Plus, I was given the opportunity to do service work in AA and learn so much more about pushing past my old boundaries.Now, after many faltering steps with this disease, it is still my intention to be of service to my fellow sufferers. I intend to start in the New Year, shortly after finishing treatment. It'll also help to keep my mind occupied while going through the steps with the possible cancer.Gloria

Hi Sherry

Im glad I brought up the 'stigma' topic too.

I am really enjoying hearing about all the ways others are dealing with this topic.

I am even thinking about other branches of this topic I hadnt thought of before.

So far I have found 3 catigorys.

[1] Stigma projected on us by society. IE: friends, family, others

[2] How we project stigma on others. IE: doing what we ourselves complain about

[3] How we project stigma on ourselves, IE: personal guilt.

Number [1] is easy...turn our backs on those who throw stones.

Number [2] is alot harder, changing our faults.

Sherry, I think maybe number [3] is the worst, how we guilt trip ourselves for our past mistakes.

How could we know that our bad behavior would come back to haunt us with a disease?

That is IF we were involved with bad behavior.

First off, the way I see it, we were young, lacked foresight, and experiance, not to mention, no one knew about HCV until just a couple of decades ago.

Secondly, it is almost impossible for most of us to pinpoint HOW we caught HCV.

Was it IV drug use, tattoos, blood transfusions, snorting coke, getting an air gun shot in the military, colon scope, the dentist....the list of possibilities is long.

My 88 year old Dad told me that, 'we cant change the past, so why beat ourselves up over the past. We must learn from the past, focus on the present, and plan for the future'.

Today we have HCV. That is our reality.

We must do what we can to think positive ALWAYS, and look forward.

None of us is evil, or bad, or faultless, or super smart, etc.

We are just humans, trying to find happiness and contentment.

We are bound to fall down, and have to pick ourselves up again.

You said it great:

'But..oh! the irony of getting sober and clean for 24 years...a brand new life opening up for me and then BOOM...the past catches up.'

My feelings exactly.

Remember.... hindsight is 20/20 vision.

gad

love

don in ks

From: gldcst <gldcstcomcast (DOT) net>Subject: [ ] Re: STIGMA Date: Friday, December 18, 2009, 11:56 AM

Don and others...I am so glad to see this topic. It's just what I need!

I have to confess I do feel stigmatized. ..by myself worst of all. I find myself discussing it as I did this morning in a whispered voice. I feel alot of shame about it. I need to process this. It may be the shame that kept me in denial for so long.

I hate to ask this question...I know it's not a popular one...about the origin of initial infection. I know in the scheme of things it does not matter but for some reason I feel a need to know. I read in Dolan's book as well as online that type 1b is not often associated with IV drug use. Is that true? I have always just accepted that I was infected during those wild and wooly early 70's when I thought I would live forever. It gave me pause to reflect on how on earth I could have otherwise been infected and I remembered a totally forgotten transfusion I had when I was 16 years old. It also mentioned Rhogam shots as a possible cause..had one in 1989.

I just need to admit this somewhere and this is really my only support system right now...why would I feel so relieved if I knew it was from transfusion and not IV Drug use? It's ridiculous. I drank for 20 years which I'm sure had more to do with the progression of this beast than anything else. Drug use for 2...unless the cocaine we now have to include as a possibility is counted. It is much more likely to be from my self destructive behavior than from anything inflicted from an outside source. But..oh! the irony of getting sober and clean for 24 years...a brand new life opening up for me and then BOOM...the past catches up.

Thank you for indulging me while I ruminate here...I know most of you have put this phase of shock and awe behind you. Another issue with the stigma I have is that when trying to explain to the girls who come to help out with my daughter exactly why I have to sleep in in the AM and am unable to get around well....I mean I "look" ok right?.....due to fibromyalgia, hepC and severe back abnormalities I sometimes wish I could just tell them I have something more visible or tangible you know? Maybe I'll start wearing a full body cast and walk around like a penguin.

Thanks again...been anxious to get a little computer time to write you all.

Sorry it's such a self-centered post.

Sherry in Florida

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