I was first diagnosed about 7 years ago. At that time hep was known as a "drug addicts' disease so I only told my immediate family. Now that hep is spoken about more, I have told most of my friends. It surprises me that I hve listened carefully for any talk of hep since I was diagnosed and have found that it still is not mentioned much. I read that Steven Tyler wanted to go on Oprah Winfrey after being treated to speak about hep but that never materialized. I did hear something encouraging a few weeks ago. The Center For Disease Control is recommending that all baby boomers be tested for hep c. They esimated that one in eleven people in that generation have hep. While I certainly don't wish hep on those people, with hep being so prevelent, it should raise awareness of the disease and hopefully also bring in more research dollars.
malinois said
Oct 26, 2012
I am 29 and was diagnosed at 15. Apparently had it from birth, passed down from my mother. The stigma that exists out there drove me to not talk about it at first. As I grew with the disease, I felt that the only way for the general public to learn is to share. I would be lying to say it is not difficult, but I think it's a fantastic medium for everyone to learn the facts about HepC. I am going thru my 3rd round of therapy. This time I am finally undetected from weeks 4 - 38 of a 48week Telepravir combo. My sister is undetected post therapy with the same drugs.
I vote the more that know about this disease, the better. Spread the knowledge.
You will gain confidence in yourself and build strength every single time you tell someone about it.
Best -
Dan
-- Edited by malinois on Friday 26th of October 2012 09:38:29 PM
LadyAlaise said
Oct 20, 2012
I did. A.) to friends and family who may have previously been exposed to my blood so they could be tested. B.) to people I dated; was always very upfront about my Hep. C.) I volunteered at a local Women's drop in center and would give presentations on various topics; safe sex pratices, drugs, alchohol, stds etc, and was asked to do one on Hep C; and if I could give a talk about my own experience with it. After that I kinda became to go to person to ask about Hep by some of younger generation (mine and younger) who either lived on the streets or darned near and were wiggy about going to a doctor to ask questions, or didn't know where to go for resources; got asked many a question, and aside from talking about it often would tell the person to go see a doctor, referred many to a local Hep C support group and handed out alot of pamphlets...Honestly after living with this disease for 12 years; in that time (over the course of years) I was very surprised to learn just how many people in my community also had Hep C; seems to be very prevalent in the western part of MA.... I have now moved to not far out of Boston, MA and most days due to tx stay home, don't go out much unless I NEED to...have made a few new friends out here but aside from them no one else out here knows I have it.
Iva said
Oct 20, 2012
When i got out of PRISON with hepc, i felt morally and leagly obliged to tell all, well all my family, friends, wife dropped me like a red poker, this was in 1986, people treated me like a rock spider, i met my second wife in 1993 and she without doubt saved my life as at this stage i had gone Bush and turned feral and was drinking more grog than 10 men and smking industial amounts of MJ, illness, depression and the police were my companions. Even today in 2012 there is enormous predjudice in OZ still due to the doctors of certain ethnic origins who have strict religous codes, these doctors are in the majority in liver care, the first thing they ask is how did you get it? should you tell people you have hep, up to you but if you do, be prepared to sort the sh$t from the shovel. iva
-- Edited by Iva on Saturday 20th of October 2012 05:28:27 PM
-- Edited by Iva on Saturday 20th of October 2012 05:29:52 PM
-- Edited by Iva on Saturday 20th of October 2012 05:30:44 PM
alohaKim said
Oct 19, 2012
It's very much a personal choice whether to tell or not. For the most part, I choose not to share that info with others. My immediate family knows, and just a select couple friends know. I was diagnosed 12 yrs ago. I just completed 36 weeks of triple therapy and I continued to live my life as normal [as possible] the whole time. People I work with do not know. I only told as much as I had to...so I informed just a few of them that needed to know that I was going through "some medical treatments that would make anemic, tired, cranky, and forgetful. I also told them it was a personal matter that I chose to keep confidential." They respected that. I'm UNDETECTABLE now, and hopefully I'll achieve SVR with my 6 month labs and this will all just be like a bad dream. I'm fortunate that I've been asymptomatic, so until I started the drugs I never felt bad, never had to explain anything. Just do what is right for YOURSELF and YOUR situation. aloha!
Neil_Canuck said
Oct 14, 2012
@ Karen
Well said !! Sometimes a good rant gets your point across especially if your emotions are driving you. With more advocates speaking out like you the battle would be won in no time. Kudos.
Mary Jane said
Oct 13, 2012
libgirl07 wrote:
I've told a few people. Most of my immediate family knows they dont treat me different. My closest friends know they dont treat me different. I've dated a couple guys since I found out they didnt care (although now i'm having a hard time telling guys this now.. I gave up on dating for now) I will say I have told some people whom I thought were friends and they told everyone around saying it was an STD. The people who matter wont mind. Its ridiculous how we have to feel this way.. I have to goto a counselor and take AD so I dont freak out lol
It is a choice as someone wrote but all my life I have been an open book.. It is what its is.. I feel I've got the oportunity to educate .. I have always felt knowledge was power.. Just about everyone I know .. knows.. It's just me.. heck when I go to the dentist office they ask me tons of questoins.. You being involved in church this could be your opportunity to teach the lesson about juding? You are going to find out more folks have Hep C than you ever realized and hell it doesn't matter how you got it.. stand tall.. peace and love MJ
Karen said
Oct 13, 2012
Thanks Neil..emotions got a hold of me today... Been working to help a friend through hep c diagnoses via facebook the last several days....little reactive..
-- Edited by Karen on Saturday 13th of October 2012 10:54:42 PM
Karen said
Oct 13, 2012
Telling people you have Hep C is a personal decision. For me the decision to spread the word was easy. I was diagnosed with Hepatitis C six years ago. At the time I had no clue what HCV was. After much research, I found it hard to believe that this was possible. I had no tattoos and I had never used a needle or had a blood transfusion. I kept asking myself, how could I have contracted a virus that was killing my liver, killing me. My life seemed to be so far removed from anything that I had read. The more I investigated, the more I realized that research for HCV was lagging and treatment options reminded me of something out of the dark ages. Depending on your geno type, the chances of beating the illness seemed to be slim..the current treatment options were a fate worse than death. It was after that I decided I could not sit back knowing that so many people would lose their battle to Hep C.
My goal is to bring about awareness and education to help prevent young adults from derailing their lives and people in my age group to get tested. I work to raise the visibility of HCV with those who injected only one time or many years ago, those sharing needles or other equipment used for common cosmetic procedures (ie., botox, steroids), people who received body piercing or tattoos done with non-sterile instruments, persons who received blood transfusions pre-mid 90's, persons who have shared a toothbrush or razor and service professionals that have worked in areas where there is blood-to-blood contact such as manicurists, barbers, athletes etc.
When I was diagnosed I had to find a positive side-a purpose, that is just me.. I was determined not to allow shame or fear to stifle my efforts and to change the stigma of HVC not allowing a repeat of HIV/AIDS with the hope of diminishing the disease overtime. Six years later there has been nothing but support and acceptance in my effort to bring about awareness..
Thank you for reading this - I am sorry if it sounds like I am on a soap box, preachy or philosophical. It is written from the heart of someone with great hope, who is living with Hep C and who has tears running down both checks right now...
Thanks everyone for all the support that you provide..
-- Edited by Karen on Saturday 13th of October 2012 10:56:46 PM
libgirl07 said
Oct 13, 2012
I've told a few people. Most of my immediate family knows they dont treat me different. My closest friends know they dont treat me different. I've dated a couple guys since I found out they didnt care (although now i'm having a hard time telling guys this now.. I gave up on dating for now) I will say I have told some people whom I thought were friends and they told everyone around saying it was an STD. The people who matter wont mind. Its ridiculous how we have to feel this way.. I have to goto a counselor and take AD so I dont freak out lol
Bills said
Oct 13, 2012
Started treatment in 2008 only told my immediate family who live with me or I see a lot and only my cousin at work
I hid it till 2012 I had 2 fears
(1) the stigma use of drugs in 70's 80's also people using hand sanitizer every where I been ( that would really pis me off)
(2) Gossip as the story get's told it will change as it goes People I don't want to know would find out I don't care so much anymore Everyone at work knows cause I took a leave So double that number I don't mention it to anyone unless they ask I was surprised to find most were only asking How am I doing
In the 12 step thing they recommend you make amends (( So long as it doesn't cause pain and problems )) Some things are better left where they are I think it's the same here If you know its going to cause Sh** don't do it. and when someone asks Wait and let them talk and thank them for their concern you don't owe an explanation. I say I'm doing better I'm still in treatment Doctors are saying I an doing good and right were I should be so all looks good.
Note : this approach is not for everyone and not meant to be I do feel much more free now This forum helped me get there There are still a lot of people who don't know yet I'm using the the don't ask don't tell policy I'm NOT going to wear a HEP C tee shirt But I am seeing that most people want to show concern for me If there are people who run away we'll that's their problem
I pray that anyone about to tell that it go's good If you do get a bad reaction it's not you examine where that's coming from
Good luck everyone
BillS
-- Edited by Bills on Saturday 13th of October 2012 01:23:43 PM
iggle said
Oct 13, 2012
I tried keeping this a secret from my family, but it was just too difficult. I gave in and told everyone that mattered to me, and I feel so much better than I did. I thought I was going to get very bad reactions, but everyone has been very supportive. I would come clean, because liver cancer is much worse than just hep c, but it is your decision to make. They are your family, they will still love you the same
news said
Oct 13, 2012
I not only told everyone who needed to know, I also went on the local TV news and did a newspaper story in the local paper, which was sold to papers all over the country. Probably risky, but it worked out OK.
kiwi said
Oct 13, 2012
12Step Guy wrote:
I think folks need to make their own decisions on this, however there is a saying "that we are only as sick as our secrets" And if keeping it from others ends up with you being more isolated or self stigmatized , I'd encourage you to reexamine it.
I've taken the path of trying to lift the stigma and open the door to others to get testing. So I'm open about my Hep_C and my past IV drug use. Im not suggesting wearing it like a flashing neon jumpsuit or carrying around a sandwich board asking "Have you been tested today". When an opportunity comes up to share or in someway educate others; I try to find an appropriate way to be open and honest. Hep-C gets added to the social "conspiracy of silence" that surrounds every disease that might imply some degree of moral waywardness (In my case it was a double dose). Its time that we get our heads out of our butts and start living in the real world.
right on mate. you got it... some people in my life know its from drugs. others think tattoos. i dont really care what THEY think...
DJ, YOU HAVE NO REASON TO BE ASHAMED, SPECIALLY IF YOU KNOW ITS FROM A TRANSFUSION.
i think you are keeping the stigma alive right there with that attitude. (sorry im just being honest) and your kids are being lied to. thats not fair.
kiwi said
Oct 13, 2012
DJ wrote:
I told my daughter I am sick and have the beginnings of liver cancer and will be on chemo. I wasn't ready to say out loud I have Hep C. I also asked my daughter (who is college age) not to tell anyone.....well she did tell and now my friends and church knows.
I was just planning to deal with this quietly, and I feel bad for not being completely honest about it. But I was so afraid of how people would react. Like they may not want to be around me.
So have you guys told people and been open about it? Or have you kept it a private thing. Right now my doctor and her staff and my husband are the only ones that know it is Hep C.
I don't know what would be best. I was thinking if I was cured I might share it with others so that people could find out it can be cured. But if I am not cured, I am worried that people might avoid me.
So can some of you share what you have done? Thanks!
omg dj. nooooooo. dont say cancer. this is why there is a stigma. i tried telling my boss to start with that i had a blood disease, but needed chemo, they were HIGHLY concerned. and eventually my boss said, 'whats it called' thats when i had to be honest and im glad i was...
i know we dont need to tell all and sundry the truth, but please be honest with your family. i beleive that will cause them undue worry.
JIme said
Oct 13, 2012
There's another saying about honesty that says we should be careful about injuring ourselves or others with our "honesty". I always remember that before I start telling someone about my past or my present.
12Step Guy said
Oct 12, 2012
I think folks need to make their own decisions on this, however there is a saying "that we are only as sick as our secrets" And if keeping it from others ends up with you being more isolated or self stigmatized , I'd encourage you to reexamine it.
I've taken the path of trying to lift the stigma and open the door to others to get testing. So I'm open about my Hep_C and my past IV drug use. Im not suggesting wearing it like a flashing neon jumpsuit or carrying around a sandwich board asking "Have you been tested today". When an opportunity comes up to share or in someway educate others; I try to find an appropriate way to be open and honest. Hep-C gets added to the social "conspiracy of silence" that surrounds every disease that might imply some degree of moral waywardness (In my case it was a double dose). Its time that we get our heads out of our butts and start living in the real world.
DJ said
Oct 12, 2012
kiwi wrote:DJ, YOU HAVE NO REASON TO BE ASHAMED, SPECIALLY IF YOU KNOW ITS FROM A TRANSFUSION.
i think you are keeping the stigma alive right there with that attitude. (sorry im just being honest) and your kids are being lied to. thats not fair.
I just don't want people avoiding me. I am not worried about them thinking I did anything wrong (and it really doesn't matter how anyone got it...and it shouldn't matter, so that isn't what I am worried about). My friends all know what a boring person I have always been. But I am afraid people will be nervous about being around me.
I suppose I will just have to figure this out as I go...knowing once I tell people I can not take it back, so it has to be something I am sure about.
-- Edited by DJ on Saturday 13th of October 2012 02:58:57 AM
gatekeep said
Oct 12, 2012
Wife always knew,family, told only people I thought I could trust at work.
This decease is so big now everybody is aware that I know about it.
I can only amagine how big it will grow with the explosion of body art/ modification
Kellyw said
Oct 12, 2012
I was pretty much right out there. Told my charge nurse first, family, who told the entire family and then i told people I work with. Never crossed my mind to feel embarrassed. IYAM what I YAM. knew I couldn't lose my job, wasn't worried about the friends or family. Wouldn't want to keep any who had any issues with it. I did have one old codger doctor suggest every sexual partner I ever had was in jeopardy - it was before I found out it is rarely transmitted sexually! And when I found out I was angry at him for making me feel bad.
Scout said
Oct 12, 2012
People are misinformed. I never hesitated to tell people what condition was once they asked. It wasn't my job to educate them, it was my job to survive tx and keep my own positive attitude. If others want to deceive and live in the dark so be it. All my son ask me was "Are you gonna die?" My reply was "no time soon" and he was cool with it. He was 14 at the time. Life can be tough. Being in fear of what someone might perceive as a negative about me isn't my business or my problem. I had enough to deal with while on treatment, no need to stoke the fire.
cmerduran said
Oct 12, 2012
you know my story... in this world, it can be dangerous to be a honest man...
but i would do the same and told her everything even i have a right to keep it secret.
DJ said
Oct 12, 2012
Thanks for sharing everyone. I think I know how I got it. I had a blood transfusion during surgery in 1979. Other than that, I have never used drugs (unless a doctor or dentist was giving me a shot but they don't reuse needles...at least I hope not). I have been with my one and only love all of my life (we met at the age of 5 and married at the age of 22). I have lived a really boring life. So looking back, the blood transfusion must have been the cause. My husband doesn't have it though so that is a blessing.
I would have told my daughter the truth except she is not good at keeping secrets at all. She wants to share things at church and ask for prayers and after I told her to keep it a secret she went on a mission trip with our church and duringa sharing tmie told EVERYONE (of course she thinks it is cancer....I actually never said I HAD cancer, I said I had the beginnings/start of cancer which the visus can start cancer....but she concluded I have cancer and after she told everyone when I asked her not to, I just don't feel safe sharing the truth with her).
I have two daughters, and honestly I don't think they would figure out what I have
..but my one daughter's boyfriend who is here all the time is pre med and I would not be surprised if he figures it out eventually.
But if my girls could keep this just between all of us, I would have told them already. But I know it won't happen. Heck.....they tell me stuff about each other that is suppose to be a secret between the two of them! They are NOT good at keeping secrets.
I wish it was not something that was so feared by others. But I really don't want to be the center of gossip/talk. I just want to deal with all of this and be done with it (hopefully).
But thank you all. It so such a difficult thing. I have read a lot of comments on many different boards (but this is the board I am most comfortable with) and I remember one woman say that if you don't tell....you can always change your mind...but once you do then you can never take it back.
I am just so glad I found you guys. It would be awful to have NO ONE to talk to about this at all! Thank you so much!
-- Edited by DJ on Friday 12th of October 2012 06:12:28 PM
-- Edited by DJ on Friday 12th of October 2012 06:13:13 PM
-- Edited by DJ on Friday 12th of October 2012 06:13:59 PM
LUV2RYDE said
Oct 12, 2012
DJ~ I kinda did the same thing. My son whom I was very close to until he got married ...I didn't tell. I flew all the way out to CA from FL to see him and my granddaughter and in our brief moment alone...I told him I have a tumor by my liver. My reason was just before that Pam Anderson was on TV and my DIL spouted out "she's a skank and thats how she got Hep C ". Well I turned around and gave her a bit of education on the subject....but could see her view and thoughts. So to avoid her maybe not wanting me around my granddaughter I opted for a stupid story. Which breaks my heart because my son and I have been through everything together. I did tell my daughter,boyfriend and my sister. I didn't tell either of my two best friends...I told them a crazy story too. There is such ignorance out in the world but when it comes from your "family" it already makes a rough situation even worse IMO. Good luck and do what is best for you.
-- Edited by LUV2RYDE on Friday 12th of October 2012 01:41:31 PM
-- Edited by LUV2RYDE on Friday 12th of October 2012 01:41:59 PM
Iris Dragonfly said
Oct 12, 2012
I have always felt honesty is the best policy. Pretty much everyone in my life knows I have this, and like Michale said...mostly no-one gives a rip.!!
As time goes on, more and more folks are going to find out they have it, and it doesn't really matter how it got there. I hope you are able to find support in your church, if anywhere...they should be there for you.
Good luck, Iris
mallani said
Oct 12, 2012
Gracious DJ, liver cancer is not a good one to pick! A simple internet search will show it to be one of the worst. Please reassure your daughter you do NOT have liver cancer. Tell her the truth- it's nothing to be ashamed of- 20% of patients have no idea how they acquired HCV.
Because of my profession, I notified our Medical Board. I just received an acknowledgement.
Of more interest was the response of friends when I stopped drinking. After getting tired of refusing drinks, I would come out with ' I've got chronic hepatitis and my liver's stuffed'. That worked.
Michaele said
Oct 12, 2012
Hi , eveyone in my family knows and noone gives a rip. My 18 yr old has known since 04. He talks about it with his friends, who dont give a rip either . One told me he was sorry to hear about my liver. My best friend and her family know. My priest and church members dont know. I dont take communion wine at church for fear of offending anyone in event that I disclose. Of the people that know, I usually bake for Christmas gifts and nobody has ever turned down fancy baked goodies. Even if a person got this from a needle as a dumb kid, dont live in shame and guilt. Are you still that dumb kid, well yeah, but are you still living the lifestyle of that dumb kid? NO!!! We are going through enough grief , no need to beat up on ourselves. And if the news is correct, there are alot of boomer out there who are infected and dont know it , so the stigma is going to take a major turn as the boomers get Dx . Then new and better Rx will be found because the public will demand it for parents and grandparents for old uncle Joe, for a spouse or a friend. Michaele
Biggyb said
Oct 12, 2012
I told a couple close relatives and asked them not to tell anyone. I think people would steer clear of me if they knew, in fear of catching it.. I know how people at work are about being around someone with a cold, let alone me with that awful hepc virus..lol...so i choose to remain silent and tell people i have a bad liver from years of alcohol abuse..
JIme said
Oct 12, 2012
I told my kids I have hep c from a fight I was in almost 40 years ago. They don't need to know any other details.
I told a few close friends that's it. I did not tell people I work with. No need to. It's nobody's business.
Margo said
Oct 12, 2012
Hi DJ, I think Hep C and having a treatment done does not sound as bad as liver cancer...your daughters must be terrified. They are old enough to understand, besides there is Internet and I'm sure sooner or later they will find out what Ribavirin and Pegasys are for.... My parents and my husband only know, hiding it is inevitable, it makes you feel and look sick. I told my kids before I started the treatment and they see me taking pills and shots. I tell them this will make mommy healthy again. They watch me in pain but go on doing their business forgetting all, funny to watch them.
DJ said
Oct 11, 2012
I told my daughter I am sick and have the beginnings of liver cancer and will be on chemo. I wasn't ready to say out loud I have Hep C. I also asked my daughter (who is college age) not to tell anyone.....well she did tell and now my friends and church knows.
I was just planning to deal with this quietly, and I feel bad for not being completely honest about it. But I was so afraid of how people would react. Like they may not want to be around me.
So have you guys told people and been open about it? Or have you kept it a private thing. Right now my doctor and her staff and my husband are the only ones that know it is Hep C.
I don't know what would be best. I was thinking if I was cured I might share it with others so that people could find out it can be cured. But if I am not cured, I am worried that people might avoid me.
So can some of you share what you have done? Thanks!
-- Edited by DJ on Friday 12th of October 2012 03:29:54 AM
-- Edited by DJ on Friday 12th of October 2012 03:30:21 AM
I was first diagnosed about 7 years ago. At that time hep was known as a "drug addicts' disease so I only told my immediate family. Now that hep is spoken about more, I have told most of my friends. It surprises me that I hve listened carefully for any talk of hep since I was diagnosed and have found that it still is not mentioned much. I read that Steven Tyler wanted to go on Oprah Winfrey after being treated to speak about hep but that never materialized. I did hear something encouraging a few weeks ago. The Center For Disease Control is recommending that all baby boomers be tested for hep c. They esimated that one in eleven people in that generation have hep. While I certainly don't wish hep on those people, with hep being so prevelent, it should raise awareness of the disease and hopefully also bring in more research dollars.
I am 29 and was diagnosed at 15. Apparently had it from birth, passed down from my mother. The stigma that exists out there drove me to not talk about it at first. As I grew with the disease, I felt that the only way for the general public to learn is to share. I would be lying to say it is not difficult, but I think it's a fantastic medium for everyone to learn the facts about HepC. I am going thru my 3rd round of therapy. This time I am finally undetected from weeks 4 - 38 of a 48week Telepravir combo. My sister is undetected post therapy with the same drugs.
I vote the more that know about this disease, the better. Spread the knowledge.
You will gain confidence in yourself and build strength every single time you tell someone about it.
Best -
Dan
-- Edited by malinois on Friday 26th of October 2012 09:38:29 PM
When i got out of PRISON with hepc, i felt morally and leagly obliged to tell all, well all my family, friends, wife dropped me like a red poker, this was in 1986, people treated me like a rock spider, i met my second wife in 1993 and she without doubt saved my life as at this stage i had gone Bush and turned feral and was drinking more grog than 10 men and smking industial amounts of MJ, illness, depression and the police were my companions. Even today in 2012 there is enormous predjudice in OZ still due to the doctors of certain ethnic origins who have strict religous codes, these doctors are in the majority in liver care, the first thing they ask is how did you get it? should you tell people you have hep, up to you but if you do, be prepared to sort the sh$t from the shovel. iva
-- Edited by Iva on Saturday 20th of October 2012 05:28:27 PM
-- Edited by Iva on Saturday 20th of October 2012 05:29:52 PM
-- Edited by Iva on Saturday 20th of October 2012 05:30:44 PM
Just do what is right for YOURSELF and YOUR situation. aloha!
@ Karen
Well said !! Sometimes a good rant gets your point across especially if your emotions are driving you. With more advocates speaking out like you the battle would be won in no time. Kudos.
It is a choice as someone wrote but all my life I have been an open book.. It is what its is.. I feel I've got the oportunity to educate .. I have always felt knowledge was power.. Just about everyone I know .. knows.. It's just me.. heck when I go to the dentist office they ask me tons of questoins.. You being involved in church this could be your opportunity to teach the lesson about juding? You are going to find out more folks have Hep C than you ever realized and hell it doesn't matter how you got it.. stand tall.. peace and love MJ
Thanks Neil..emotions got a hold of me today... Been working to help a friend through hep c diagnoses via facebook the last several days....little reactive..
-- Edited by Karen on Saturday 13th of October 2012 10:54:42 PM
Telling people you have Hep C is a personal decision. For me the decision to spread the word was easy. I was diagnosed with Hepatitis C six years ago. At the time I had no clue what HCV was. After much research, I found it hard to believe that this was possible. I had no tattoos and I had never used a needle or had a blood transfusion. I kept asking myself, how could I have contracted a virus that was killing my liver, killing me. My life seemed to be so far removed from anything that I had read. The more I investigated, the more I realized that research for HCV was lagging and treatment options reminded me of something out of the dark ages. Depending on your geno type, the chances of beating the illness seemed to be slim..the current treatment options were a fate worse than death. It was after that I decided I could not sit back knowing that so many people would lose their battle to Hep C.
My goal is to bring about awareness and education to help prevent young adults from derailing their lives and people in my age group to get tested. I work to raise the visibility of HCV with those who injected only one time or many years ago, those sharing needles or other equipment used for common cosmetic procedures (ie., botox, steroids), people who received body piercing or tattoos done with non-sterile instruments, persons who received blood transfusions pre-mid 90's, persons who have shared a toothbrush or razor and service professionals that have worked in areas where there is blood-to-blood contact such as manicurists, barbers, athletes etc.
When I was diagnosed I had to find a positive side-a purpose, that is just me.. I was determined not to allow shame or fear to stifle my efforts and to change the stigma of HVC not allowing a repeat of HIV/AIDS with the hope of diminishing the disease overtime. Six years later there has been nothing but support and acceptance in my effort to bring about awareness..
Thank you for reading this - I am sorry if it sounds like I am on a soap box, preachy or philosophical. It is written from the heart of someone with great hope, who is living with Hep C and who has tears running down both checks right now...
Thanks everyone for all the support that you provide..
-- Edited by Karen on Saturday 13th of October 2012 10:56:46 PM
Started treatment in 2008 only told my immediate family who live with me or I see a lot and only my cousin at work
I hid it till 2012 I had 2 fears
(1) the stigma use of drugs in 70's 80's also people using hand sanitizer every where I been ( that would really pis me off)
(2) Gossip as the story get's told it will change as it goes People I don't want to know would find out I don't care so much anymore Everyone at work knows cause I took a leave So double that number I don't mention it to anyone unless they ask I was surprised to find most were only asking How am I doing
In the 12 step thing they recommend you make amends (( So long as it doesn't cause pain and problems )) Some things are better left where they are I think it's the same here If you know its going to cause Sh** don't do it. and when someone asks Wait and let them talk and thank them for their concern you don't owe an explanation. I say I'm doing better I'm still in treatment Doctors are saying I an doing good and right were I should be so all looks good.
Note : this approach is not for everyone and not meant to be I do feel much more free now This forum helped me get there There are still a lot of people who don't know yet I'm using the the don't ask don't tell policy I'm NOT going to wear a HEP C tee shirt But I am seeing that most people want to show concern for me If there are people who run away we'll that's their problem
I pray that anyone about to tell that it go's good If you do get a bad reaction it's not you examine where that's coming from
Good luck everyone
BillS
-- Edited by Bills on Saturday 13th of October 2012 01:23:43 PM
I tried keeping this a secret from my family, but it was just too difficult. I gave in and told everyone that mattered to me, and I feel so much better than I did. I thought I was going to get very bad reactions, but everyone has been very supportive. I would come clean, because liver cancer is much worse than just hep c, but it is your decision to make. They are your family, they will still love you the same
right on mate. you got it... some people in my life know its from drugs. others think tattoos. i dont really care what THEY think...
DJ, YOU HAVE NO REASON TO BE ASHAMED, SPECIALLY IF YOU KNOW ITS FROM A TRANSFUSION.
i think you are keeping the stigma alive right there with that attitude. (sorry im just being honest) and your kids are being lied to. thats not fair.
omg dj. nooooooo. dont say cancer. this is why there is a stigma. i tried telling my boss to start with that i had a blood disease, but needed chemo, they were HIGHLY concerned. and eventually my boss said, 'whats it called' thats when i had to be honest and im glad i was...
i know we dont need to tell all and sundry the truth, but please be honest with your family. i beleive that will cause them undue worry.
There's another saying about honesty that says we should be careful about injuring ourselves or others with our "honesty". I always remember that before I start telling someone about my past or my present.
I think folks need to make their own decisions on this, however there is a saying "that we are only as sick as our secrets" And if keeping it from others ends up with you being more isolated or self stigmatized , I'd encourage you to reexamine it.
I've taken the path of trying to lift the stigma and open the door to others to get testing. So I'm open about my Hep_C and my past IV drug use. Im not suggesting wearing it like a flashing neon jumpsuit or carrying around a sandwich board asking "Have you been tested today". When an opportunity comes up to share or in someway educate others; I try to find an appropriate way to be open and honest. Hep-C gets added to the social "conspiracy of silence" that surrounds every disease that might imply some degree of moral waywardness (In my case it was a double dose). Its time that we get our heads out of our butts and start living in the real world.
I just don't want people avoiding me. I am not worried about them thinking I did anything wrong (and it really doesn't matter how anyone got it...and it shouldn't matter, so that isn't what I am worried about). My friends all know what a boring person I have always been. But I am afraid people will be nervous about being around me.
I suppose I will just have to figure this out as I go...knowing once I tell people I can not take it back, so it has to be something I am sure about.
-- Edited by DJ on Saturday 13th of October 2012 02:58:57 AM
People are misinformed. I never hesitated to tell people what condition was once they asked. It wasn't my job to educate them, it was my job to survive tx and keep my own positive attitude. If others want to deceive and live in the dark so be it. All my son ask me was "Are you gonna die?" My reply was "no time soon" and he was cool with it. He was 14 at the time. Life can be tough. Being in fear of what someone might perceive as a negative about me isn't my business or my problem. I had enough to deal with while on treatment, no need to stoke the fire.
but i would do the same and told her everything even i have a right to keep it secret.
Thanks for sharing everyone. I think I know how I got it. I had a blood transfusion during surgery in 1979. Other than that, I have never used drugs (unless a doctor or dentist was giving me a shot but they don't reuse needles...at least I hope not). I have been with my one and only love all of my life (we met at the age of 5 and married at the age of 22). I have lived a really boring life. So looking back, the blood transfusion must have been the cause. My husband doesn't have it though so that is a blessing.
I would have told my daughter the truth except she is not good at keeping secrets at all. She wants to share things at church and ask for prayers and after I told her to keep it a secret she went on a mission trip with our church and duringa sharing tmie told EVERYONE (of course she thinks it is cancer....I actually never said I HAD cancer, I said I had the beginnings/start of cancer which the visus can start cancer....but she concluded I have cancer and after she told everyone when I asked her not to, I just don't feel safe sharing the truth with her).
I have two daughters, and honestly I don't think they would figure out what I have
..but my one daughter's boyfriend who is here all the time is pre med and I would not be surprised if he figures it out eventually.
But if my girls could keep this just between all of us, I would have told them already. But I know it won't happen. Heck.....they tell me stuff about each other that is suppose to be a secret between the two of them! They are NOT good at keeping secrets.
I wish it was not something that was so feared by others. But I really don't want to be the center of gossip/talk. I just want to deal with all of this and be done with it (hopefully).
But thank you all. It so such a difficult thing. I have read a lot of comments on many different boards (but this is the board I am most comfortable with) and I remember one woman say that if you don't tell....you can always change your mind...but once you do then you can never take it back.
I am just so glad I found you guys. It would be awful to have NO ONE to talk to about this at all! Thank you so much!
-- Edited by DJ on Friday 12th of October 2012 06:12:28 PM
-- Edited by DJ on Friday 12th of October 2012 06:13:13 PM
-- Edited by DJ on Friday 12th of October 2012 06:13:59 PM
DJ~ I kinda did the same thing. My son whom I was very close to until he got married ...I didn't tell. I flew all the way out to CA from FL to see him and my granddaughter and in our brief moment alone...I told him I have a tumor by my liver. My reason was just before that Pam Anderson was on TV and my DIL spouted out "she's a skank and thats how she got Hep C
". Well I turned around and gave her a bit of education on the subject....but could see her view and thoughts. So to avoid her maybe not wanting me around my granddaughter I opted for a stupid story. Which breaks my heart because my son and I have been through everything together. I did tell my daughter,boyfriend and my sister. I didn't tell either of my two best friends...I told them a crazy story too. There is such ignorance out in the world but when it comes from your "family" it already makes a rough situation even worse IMO. Good luck and do what is best for you.
-- Edited by LUV2RYDE on Friday 12th of October 2012 01:41:31 PM
-- Edited by LUV2RYDE on Friday 12th of October 2012 01:41:59 PM
I have always felt honesty is the best policy. Pretty much everyone in my life knows I have this, and like Michale said...mostly no-one gives a rip.!!
As time goes on, more and more folks are going to find out they have it, and it doesn't really matter how it got there. I hope you are able to find support in your church, if anywhere...they should be there for you.
Good luck, Iris
Gracious DJ, liver cancer is not a good one to pick! A simple internet search will show it to be one of the worst. Please reassure your daughter you do NOT have liver cancer. Tell her the truth- it's nothing to be ashamed of- 20% of patients have no idea how they acquired HCV.
Because of my profession, I notified our Medical Board. I just received an acknowledgement.
Of more interest was the response of friends when I stopped drinking. After getting tired of refusing drinks, I would come out with ' I've got chronic hepatitis and my liver's stuffed'. That worked.
Hi , eveyone in my family knows and noone gives a rip. My 18 yr old has known since 04. He talks about it with his friends, who dont give a rip either . One told me he was sorry to hear about my liver. My best friend and her family know. My priest and church members dont know. I dont take communion wine at church for fear of offending anyone in event that I disclose. Of the people that know, I usually bake for Christmas gifts and nobody has ever turned down fancy baked goodies. Even if a person got this from a needle as a dumb kid, dont live in shame and guilt. Are you still that dumb kid, well yeah, but are you still living the lifestyle of that dumb kid? NO!!! We are going through enough grief , no need to beat up on ourselves. And if the news is correct, there are alot of boomer out there who are infected and dont know it , so the stigma is going to take a major turn as the boomers get Dx . Then new and better Rx will be found because the public will demand it for parents and grandparents for old uncle Joe, for a spouse or a friend. Michaele
I told a couple close relatives and asked them not to tell anyone. I think people would steer clear of me if they knew, in fear of catching it.. I know how people at work are about being around someone with a cold, let alone me with that awful hepc virus..lol...so i choose to remain silent and tell people i have a bad liver from years of alcohol abuse..
I told my kids I have hep c from a fight I was in almost 40 years ago. They don't need to know any other details.
I told a few close friends that's it. I did not tell people I work with. No need to. It's nobody's business.
I told my daughter I am sick and have the beginnings of liver cancer and will be on chemo. I wasn't ready to say out loud I have Hep C. I also asked my daughter (who is college age) not to tell anyone.....well she did tell and now my friends and church knows.
I was just planning to deal with this quietly, and I feel bad for not being completely honest about it. But I was so afraid of how people would react. Like they may not want to be around me.
So have you guys told people and been open about it? Or have you kept it a private thing. Right now my doctor and her staff and my husband are the only ones that know it is Hep C.
I don't know what would be best. I was thinking if I was cured I might share it with others so that people could find out it can be cured. But if I am not cured, I am worried that people might avoid me.
So can some of you share what you have done? Thanks!
-- Edited by DJ on Friday 12th of October 2012 03:29:54 AM
-- Edited by DJ on Friday 12th of October 2012 03:30:21 AM