This was posted on one of the other forums and I really had to share it. I've posted it in 3 parts due to it's length.
HCV Stigma Part I
found this amazing article on how others view us, and how we don't help cometimes!...it is a great read.
August 27, 2007
Breaking the Hepatitis C Stigma
While more people are currently living with Hepatitis C than any other chronic blood-borne infectious disease, the illness still carries a stigma in many social circles. Find out how you can contribute to the efforts focusing on removing the stigma associated with a Hepatitis C diagnosis.
The MSN Encarta Dictionary defines stigma as “a sign of social unacceptability: the shame or disgrace attached to something regarded as socially unacceptable.” According to the US Department of Health and Human Services, “stigma is about disrespect.”
For some people, the stigma of living with Hepatitis C is more harmful than the virus itself. While medical research and treatment primarily target prevention and viral eradication, there is a lot more effort required to change public perception and attitudes toward Hepatitis C. There are two parts to breaking a disease-related stigma: education and self-respect. By educating communities on Hepatitis C and learning to feel good about yourself (regardless of viral status), Hepatitis C can be removed from the category of socially unacceptable conditions.
The primary reasons for any condition to be stigmatized are the lack of compassion, fear and ignorance. Hepatitis C is a prime candidate for such an attitude for several reasons:
• Fear of Transmission – Because Hepatitis C is an infectious disease without a definitive cure, people are afraid of getting it. Although not easily transmitted, people are nevertheless fearful and may shun those who have the disease. Fear and ignorance have cost those with Hepatitis C their jobs, friendships and marriages.
• Fear of Illness – Some people do not like to be around people who are sick. Being uncomfortable around others who have an illness is how certain people protect themselves from their personal fears. This discomfort may cause them to socially reject people with diseases instead of risking exposure to suffering and/or death.
• Judgment – Despite the many ways of acquiring Hepatitis C, misinformed people sometimes assume that everyone with Hepatitis C has a history of injection drug use. Even if this is a person’s mode of viral acquisition, our society lacks compassion and understanding about injection drug use. Those without personal exposure to injected drugs may judge people who have. Former injection drug users may feel haunted by their pasts and judge themselves. Additionally, many active injection drug users carry shame about their addiction. Regardless of the situation, casting judgment on a person for their past addiction or viral status is devoid of compassion for their very personal situation.
Several of Hepatitis C stigma’s negative consequences include reduced self-esteem, diminished mental health, less access to medical care and fear of disclosing a positive status. Additionally, this attitude may contribute to hesitancy on the part of some medical providers to treat people infected with Hepatitis C.
In the January 2006 issue of Hepatitis magazine, the staff conducted an informal web poll about stigma and viral hepatitis. On the plus side, 42 percent of poll participants felt they had not faced any stigma due to living with hepatitis. However, more than half of all respondents reported being treated differently due to their disease. Of those who participated in the poll, 20 percent felt they had experienced job discrimination due to having Hepatitis B or Hepatitis C, 13 percent reported hepatitis-related social stigma and 13 percent had been alienated from family and friends because of viral hepatitis.
Any social stigma finds its roots in fear of the unknown. Many Americans have misconceptions about the way Hepatitis C is transmitted. Once diagnosed with the virus, most affected people diligently study how the disease is spread, and how they likely acquired it. However, a person without firsthand experience with Hepatitis C may mistakenly assume it can be transmitted through sharing a glass of water or even from being coughed or sneezed on by an infected person. Until all reaches of society learn the facts about this virus, inaccurate stereotypes fueled by fear will persist.
Educating yourself and others will break down the stigma associated with Hepatitis C. Many communities have Hepatitis C task forces to promote community awareness. Getting involved with Hepatitis C informational training sessions targeting local schools, hospitals, drug treatment programs, government agencies and similar community organizations will fill replace fear with knowledge, helping to remove the negative perspectives about this disease. In the words of Margaret Mead, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”
If you have Hepatitis C, the first step in breaking the stigma is to start with your own attitude toward your illness. Some questions to ask in uncovering this include:
• Do you label yourself as a sick person?
• Do you expect to be shunned from co-workers, friends and family?
• Do you feel like you deserve to have Hepatitis C?
Honestly examining your own feelings of shame and working to shift those feelings into pride makes a tremendous difference when facing the world with any illness. Living in the present and looking to the future are the best ways to leave negativity in the past. By learning how other people live with the disease, many people find help in discussing their feelings at Hepatitis C support groups. In order to garner the respect from others, it is absolutely necessary to first develop respect for yourself. Additionally, feeling good is the single most important factor in living a long, healthy and rewarding life. Compiled by the Hepatitis C Support Project, below are nine tips for developing a healthy attitude:
1. Make sure you know the truth. Get accurate information about Hepatitis C. Some people mistakenly believe Hepatitis C is an automatic death sentence. The truth is, the majority will die with Hepatitis C, not of Hepatitis C.
2. Don’t make things worse by imagining a future with pain, disability or loss. Improve your odds by visualizing your future the way you want it. Visualizing health, not illness, is a powerful tool for self-transformation.
3. Maintain perspective of the big picture. Focus your attention on something that brings peace, joy, laughter and meaning. Tell yourself that difficult moments will pass.
4. Watch your words. If you hear yourself talking negatively, substitute positive phrases. Say, “I will find a way to live with Hepatitis C” rather than “Hepatitis C is ruining my life.”
5. Practice gratitude. Make it a habit to find things for which you are grateful.
6. Learn what you can control and what you cannot. There are things you cannot control, such as the fact that you have Hepatitis C. However, there are things you can control, such as your attitude and what you say to yourself about having Hepatitis C.
7. Learn from the virus. Ask yourself what Hepatitis C can teach you about living.
8. Get support. Being with others who are dealing with the same issues can bring encouragement and hope.
9. Help others. When it comes to stepping outside of ourselves, probably nothing works as well as reaching out to others who are also struggling.
By cultivating self-respect through a positive attitude and through active participation in educating your community on Hepatitis C, you can take an active role in breaking the Hepatitis C stigma and helping those diagnosed with the disease to finally receive the compassion they deserve.
Wow, I like to think I knew all this already, but to read it in one (three) neat packages was pretty cool. I struggle daily with cultivating self-respect, but then I look at how well I have educated myself about Hep C and find that quest to be a positive. So it goes, back and forth, for me.
One of the comments...do I think of myself as a sick person? Feeling kind of tired lately, waiting for the new PI's to come out, so I DO think of myself as a sick person. Wow. Bummer. But I still get up everyday, get outside, garden, cook, all the easy things I used to do. But if I am laser-truthful with myself, I stay home a lot. A lot. I have a very full life here at home, no tv couch potato stuff going on, but there is this deep need to be solitary. I have talked with other folks who do the same, but that still does not make it the best choice. It's just the choice I have made for now.
I'm going to have to go noodle what you've posted for awhile. Thanks for the good words.
Hmmm-wise words. when my hubby was first dxed he felt he had to inform his boss. I have no idea why he would, and cautioned him not to, as we really did not know much about HCV. Within 2 weeks of informing the boss, my hubby's job was suddenly "downsized". A quick call to attorney and some education made suing the co. over unlawful dismissal unneccesary, his job was miraculously back again....but the stigma remains. Hubby has never felt like an outcast and truly until he developed HepatoCell Carcinoma, he was doing fine. If he could do it over again he wouldn't have told his boss. Uneducated people have said very hurtful and painful things to him, and to me about it. Like we're filthy or something---they lump every disease in with every other one and act like they're all the same. I try to educate as much as I can. Maybe a difference can be made, in time.
I am just in complete denial over the fact that I may not be able to be cured through combo therapy. I don't see how I can tell anyone at work. I sell food products for God's sake. Plus. I received my infection through rape, another thing I don't care to discuss with the general public. There is a huge stigma about hepatitis C. I think I would be kidding myself to say that there wasn't. Other than my doctor and my mother, nobody knows, and I can't envision a time when I feel I'll be able to tell people.
In fact, I'm trying to figure out what I'm going to tell people when I'm the combo therapy. I know I'll be quite ill. What will I tell people at work. That I have cancer? I'm very scared and very lost right now, and just barely keeping the panic under control.
Very good article. Not mentioned is that IMO many people treat Hep C more because of the stigma than the actual disease. How many here have said they just wanted to get rid of the "dirty virus" in their bodies or something like that. Hey, this virus is no more "dirty" than any other virus.
Anyway, I think we're all suseptible to this kind of thinking. Pesonally, I consider myself lucky that for the vast majority of the time I had Hep C, I wasn't aware of it, because it hadn't been discovered yet. I got it in 1969 and then it was called "chronic persistent hepatitis" and later "non a, non b" hepatitis. No stigma attached. Stigma started when it was named "Hepatitis C".
HCV Stigma is the worst part but it is something we will not change in our life time so I just don't tell anyone, because they don't really care, and trying to educate people that don't care is a waste of my time! Sometimes I hear people crying about their little problems and I want to say shut the "F" up you don't have a "F'ing" clue about problems, but thru my clouded mind I say they just don't care anyway! I can't be so sure if I never had this that I wouldn't shy away from someone who did! I know I've learned alot about compassion having this! Hell I don't know what I'm saying!
I think you characterized my feelings pretty nicely actually. I just want to get rid of this dirty virus that's invaded my body. I just can't at this point, separate out the manner in which I was infected and the virus itself. It would be entirely different, I think, if I had received it via a blood transfusion or the like. But every time I think of it, its just another violation piggy-backed onto the violation I already experienced. This guy who violated me also left this nasty little surprise behind. To say that I feel like damaged goods at this point would be... an understatement. I was at an extreme emotional downturn after being raped, but I was trying to deal with it. Now this? How am I going to go through therapy and work? What am I going to do?
I'm pretty well just devastated. This is the last thing I needed right now, and on top of that, I am sick. Very sick. Sorry all. Just not a good night.
ALA - No - you have to stop that kind of thinking. OK
That guy was a SCUM SUCKING BOTTOM DWELLER who had NO RIGHT to do what he did and deserves whatever bad things fate hands him.
However - yeah, you got this disease - quite probably from that bad experience... But you have to separate it.
You cannot think of something inside you - invading you --- as having belonged to him.
You have to fight to hold yourself together - you have to be strong.
What you have inside you is a virus. YOU ARE NOT DAMAGED GOODS.
You're an amazingly strong, resillient, Bright, Intelligent, humurous, smart woman!
YOU WILL PERSERVERE.
And I think you should be shouting it from the rooftops!
I am so sick of all the hush hush --- quiet --- don't tell anyone --- cause we don't want to know out there in the world. We want to believe the world is perfect --- and anything that changes our perception is BAD.
Well I'm here to tell you alagirl --- You are NOT bad...
You did nothing wrong.
And that's the only thing you have to deal with.
Do you understand that?
It isn't the same thing --- but it's "like" a drunk driver who is involved in a fatality accident.
You wouldn't place a stigma on the sober driver.... whose passenger was killed.
NOR would you place a stigma on the driver who now has HCV or HIV because of the blood transfusions caused by the drunk driver's accident.
WHY in the world are you putting that kind of pressure on yourself?
You need to get into a group. Check out RAINN (Tori Amos) Check out any other Rape Crisis lines. There are a lot of folks online -- or places online... But you NEED to get someone to talk to... Online or offline... You will go crazy thinking it over... and over... You are isolating yourself and you have a DOUBLE WHAMMY to deal with.
Girl - thousands have been where you are. It's the hardest thing a woman can get through --- self doubt --- debasement, feeling as if it was your fault - Angry - Depressed - insane thoughts...
You need to know:
IT IS NOT YOUR FAULT.
You need to know:
YOU ARE NOT DIRTY
You need to know:
YOU DID NOT CAUSE THIS
You need to know:
YOU WERE VIOLATED AND THAT PERSON WAS WRONG - YOU ARE NOT WRONG
You need to know:
THOUSANDS OF OTHER WOMEN HAVE FELT EXACTLY LIKE YOU
and they need your support and your help - just as much as you need theirs right now...
YOU HAVE EVERY RIGHT TO BE ANGRY
But not at yourself.
YOU HAVE EVERY RIGHT TO BE UPSET
But you are NOT DIRTY
You have every right to feel Depressed
But don't slide into depression - stop it now --- go get some help somewhere --- online -1800 numbers anything.
Super hugs --- I just wanted you to know -- YOU ARE A VICTIM... But that doesn't mean you get to slide into hopelessness.
It must have been a terrible experience. I hope for your sake that over time, your emotions change, and you start to concentrate on what you can control (treatment options, living healthy, etc.), rather than what you cannot control (how you contracted the virus). There is almost a grieving process with disease I think, something that has to be worked through, perhaps talked about with those close to us.
There are many way's people contract Hepatitis C. In my case, I was a victim of a home invasion. I fought with the attacker, who knifed me, he himself got cut. I was on all local media (including TV and newspaper front page) for 2 days following the initial event, and again, was on all the media after the Court conviction (my assailant received 9 1/2 years). The media found out from the Court I had contracted the disease (it was relevant to sentencing), so privacy does not exist for me. In a way this has been fine, as it has allowed me to find out how many people close to me have this disease (as they want to talk to me knowing my condition).
My father in law contracted Hepatitis C from acupuncture. He is in his 70's now, and doing fine (he does not drink). I have a cousin who died of Hep C, but he was a habitual drug user / alcholoic (former merchant marine sailor). My neighbors boyfriend has Hep C and seems fine (he is gay, although I do not know if this is related to his infection), and a lady at my work has Hep C (she thinks maybe from dental surgery), she will start treatment soon, like me.
I have another work colleague a similar age to me fighting early symptoms of MS. This is a much more frightening condition, as he saw his own grandfather decline into a wheelchair / incontinence from MS.
At some point in our lives', every one of us is going to get sick, and eventually die. It really does not matter how we get sick. A virus is no different from cancer, or MS, or the pain of arthritis. I am sure you will pass through the grieving over what happened as terrible as it has been, and move forward with your life.The reminder of what happened may always be there, but your mental strength will make it easier with time.
I have such mixed feelings about this disease. Any one I "know" through the forum, I accept completely and without judgement. However, strangers are a different matter and I am a judgemental, insensitive bigot sometimes.
Here are two examples of my way of thinking:
1) I work in rehab in a skilled nursing unit, and a sick, older woman came in for therapy after a hospitalization. She use to live in Las Vegas, has a deep throaty voice, and was a club singer and a gospel singer. (Kind of a contradiction, I know) While reviewing the chart, I see that she has also been diagnosed with hep c. I never think twice about her dx, and wonder how much she knows about her disease. We never discuss it.
2) A 44 yr old patient comes in with a shaved head except for a thin, tiny braided ponytail that reaches down his back. He's on complete disability from drug abuse, he's covered with tatoos, and he has had multilple seizures and a stroke from frying his brain during his using days. I am reluctant to get to know him or tx him. I feel uncomfortable around him.
Am I wrong? Absolutely! Can I expect other people to view hep c as a simple virus like chicken-pox when I can't get past the stereo-typing? No...... there's a mindset, and I'm not helping when I am just as quick to pass judgenment, even as I live with the disease....
The stigma is automatic, and it feeds on itself, due to the populations that have the highest incidence of the disease. My specialist (an imunologist - as there was intial concern I could have contracted HIV) talks to me sometimes about her other patients (many of whom are prisoners, continuing to use drugs in prison). Treatment is often hopeless due to re-infectection.
This is an important reason why for many, it is better not to disclose that they have the disease (if nothing else, to prevent an endless story as to how it has happened, perhaps explaining, "why you are not "bad""). As I learn more, I try not to think think anyone is bad, no-one deserves this, no matter how stupid they have been. I agree, it's hard not to judge sometimes though.
One positive way to think of the stigma to help me through treatment, is I often think "I will do better on this treatment than the percentages, as unlike some on the trials, I am not missing meds to inject drugs, or similar".
But the stigma of others is separate from your personal mindset of your health, which is based on your own experiences and knowledge. I think this mindset has to be that this just a disease, otherwise you end up focusing on that dirty little virus eating up your liver. That sort of energy focus won't get you anywhere.
Do you feel uncomfortable around him because he's a "scary kind of guy"?
Or do you feel uncomfortable because you know about HCV now - and you feel more at risk with those you KNOW have it --- vs. those who you have no clue?
See... the unknown is "clean" - "pristine"... when in reality it is quite the opposite.
Knowing he has the dx - means you can use more precautions with him. But he might just be a "scary kind of guy" that you'd never be friends with in the first place. He represents everything you would never be or associate with.
Just because he has HCV does not make him a great person... nor does HCV make anyone less of a person.
They are who they are --- with or without HCV....
It's the disease you have to look around --- not the person.
A person who is a jerk or scumbag --- just because they have a disease doesn't make them special...
But a person who is kind, friendly ---- and a good human all around --- a disease does not make them worse.
Does that make sense bug?
I know what you mean by stereotyping... But you're not stereotyping the disease and the people who have the disease... You're stereotyping people you just don't have anything in common with --- other than the disease... and that makes you feel uncomfortable.
Yeah ---- it is just a virus like chicken pox --- except this one kills liver cells instead of giving the mean bumps.... But --- you don't have to like everyone that has it...
You don't have to associate with everyone that has it.
You're ok - bug.... Honest... You are ok... Don't judge yourself so harshly... OK?
The other thing related to stigma that jumps out at me is ignorance. I had a work colleague once say to me he thought I had been absent for a period, because there was concern I was contagious (I was actually suffering acute Hep C symptoms).
All those TWINREX adds on TV confuse people IMO, showing them how easy Hep A is to get (from a drink, or similar). It adds to the fear and the predjudice. I wish Hep C had a totally different name from Hep A and Hep B for the simple reason that people mix them all up. It's confusing enough for me, let alone somewhere who has simply seen, and heard, all these stories of people with Hep A, B or C. It all mixes up, breeding ignorance and fear.
Yes Alagirl there is a huge stigma about HepC and the worst thing that happens is when we stigmatize ourselves. The way you caught this virus sux, but no matter how we catch HCV I think most of us have a little trouble accepting the Dx. I know I did, Thought I was dead and dying before my daughter turned 21 didn’t appeal to me.
I made the mistake of treating just to try and get rid of the virus. It was monotherapy and not unsurprisingly it didn’t work. If I had waited about a year I could have added Ribavirin and had a much better chance. I coped with this Tx failure by ignoring that I had HepC. Having my Liver Doctor tell me I was going to die of Liver Cancer didn’t help matters, so I just went stuff it and spent the next 10 years trying to forget. HCV does get less scary and the panic does go away.
None of us can change how we caught HepC nor cant we undo it. The virus found us we didn’t go out looking for it. We can only accept it and then come to terms with it, then eradicate it. The future in terms of treatment is a lot brighter than it was when I was diagnosed.
I wouldn’t tell too many that you have it. Wait until you are cured and have a story to tell. Its nobody’s business anyway. The fact that you have HepC has no bearing on selling food, You don’t have HepA so its not like you will spread it. Now if you were a surgeon?
HepC requires the right conditions for transmission to occur. Infected blood and an entry point into our blood stream. Why tell anyone at work its none of their nevermind.
Worry about the Tx sides if and when you have them not everyone suffers badly from them. I went through Tx and still worked and no one new. Telling people is solely your choice.
I wouldn’t worry too much about things you cant change and focus on what you can.
Remember the virus wont win, it doesn’t have a brain we do.
Thanks so much! I really felt like I was putting myself on the line admitting how two-faced I am. Both of you helped me sort my feeling on this. I would hardly disclose my status to anyone while I was on tx, I never told the people I worked with that I was treating. (after I learned the hard way at my previous job) I'm much more open about it now, it's easier to say I treated and am clear. My sister even asked if it was safe to drink after me.
Meki, you nailed it. He is a scary guy. His family scares me too. You're right, it has nothing to do with the hep c. Thanks so much for helping me with that. I never looked at it that way. I was mad at myself that I didn't find a common bond and have more compassion. I am ashamed about the compassion part, but that is something I just have to work on.
Thanks again and hugs,
Meki you are amazing, thanks for your compassionate, intelligent, inspiring and insightful comments... we all need to feel good about who we are, no matter what the past .... hugs to everyone, i wish i could do more than just write a few words because i am not good with words.... but if we were neighbors, well i would love to make everyone some of my chicken soup (or vegetable) or maybe just a slice of cake and some coffee.... we could take a walk down by the river, feel connected to the earth the way humans are meant to feel and recharge our batteries a little. thank you for telling us about the stuff going on inside you because we all have those "bad neighborhoods" that we walk around in mentally and beat ourselves up, so let's go somewhere else. not so esy sometimes, but it seems that this online neighborhood is a very very understanding and safe place to be. XOXOXOXOXO
These posts are very helpful & thankyou for taking the time to post this sorely needed information. I detest the stigma which appears to be alive and well. Alagirl & moahunter, those F---ing pigs who violated both of you should be erased off the planet just like the disease. I am a recovered drug addict who practiced in the 60's & 70's & then caved to alcohol until 1982. There are so many ways I could have gotten the disease, like in 60's sharing needle with a guy who I knew had been hospitalized for hep but i didn't care. Wanted the drug thru the quickest route. Date rapes, many unclean needles, addicts & hospitals, all contributed. What I found when I started treatment, was first the relief that I am going to fight a disease with treatment instead of the denial that I had practiced for 5 years after diagnosis. As treatment oops earthquake will be back - nothing serious, I am back. California living! As treatment began, I only told people I could trust and no one has let me down. Which I thoroughly recommed. I told one dentist who will not treat me anymore. One person I did educate. In my third week of treatment, after a riba rage I decided I didn't give a sh-- what the world thought of me. I started painting the disease & treatmemt, a good outlet for anger, and I paint more than journal. I have found a new confidence in myself and I am so grateful that the treatment is available to us. I have spent a lifetime feeling less than but now I feel treatment has become another step in my spiritual journey. I KNOW ALL OF US ARE SURVIVORS!!!! We are GOOD, COMPASSIONATE people I am an advocate for solitary living because, as long as we building our lives, it gives us an opportunity to reflect on our current lives in a more profound way than we probably have had in the past. I am waiting for 2nd VL results. The first VL should an increase rather than decrease. I figure, whatever happens, I may lose the battle but I will win the war!
Love and good treatment to all of you! Jenn
I am definitely treating to try to get rid of it at this point. I don't see other people with HepC as bad or dirty, in the same way that I don't see people with HIV that way, regardless of how they got their disease. My problem is that I absolutely know how society at large frequently views people with HepC and I don't want to be viewed that way. And that is not going to change anytime soon. It's just not. People are biased, and they are going to remain biased about this and about many other things for a long time.
I KNOW dealing with food products can't spread HepC but what do you want to bet that if people knew I had this disease they wouldn't buy those same products from me? People are ignorant, and I just don't have the mental fortitude to deal with that right now on top of everything else. And that sucks because now is the time when I could really use the support of all of my friends and coworkers. But I can't tell them.
Instead, I have to deal with a disease that has already made me feel very ill with the support of only two or three people. Which means that I have to be disingenuous in living my life. I can no longer be authentic and at the same time, economically viable. And I hate that. I'm not good at having to hide things, and having to be insincere. I am just angry on so many levels because I feel as if I've been forced into this box through no choice of my own and I want out. I just want to treat as quickly as possible and get out. If the treatment doesn't work... Then maybe I'll be in a better place at that point and can deal with it, who knows. At this point, I can't even consider that it might pan out that way.
And I cannot even imagine telling a member of the opposite sex about this, so I'll definitely be going this alone. I had just started dating again after the rape, but had not had sex with anyone. Now I just don't answer the phone, because what would I say? I just feel like so much has been taken from me for no reason. And I'm sorry if I sound like I'm having a personal pity party over here, but I'm just very angry right now. It will pass, but it's going to take a while.
Ala - what you're feeling is 10000000000% normal after that kind of violation.
BUT YOU CANNOT sit in your house and stew alone on your depression. That is a very dangerous thing to do.
You absolutely should find the RAINN network. It's an amazing thing.
You need to meet other women who have been where you are now --- and can help you with their insight.
You aren't the first - you won't be the last --- but it is so very personal and so very hard to deal with.
And it sounds like you are dealing with it alone. I don't know if ANYONE is strong enough to deal with rape alone --- let alone having HCV. OMG girl --- My heart is crying out for you. That's just too much for one person alone to handle.
Please... Even if you totally don't want to... Even if it's the last thing you want to do --- even if it's the hardest thing to do... Call one of the help lines at Rainn or ANYWHERE.
Do it now... Please... Just force yourself to...
Even if you feel empty or just humiliated or angry --- just take that extra step... if you can't do it for yourself --- do it for me... and all of us on the board.
I can't promise that it will make you feel better right now.
But I can promise that there are pieces of the puzzle that they can help you put your life back together... for the future.
You are a bright, beautiful strong woman.
And RAPE is NOT about SEX.
It's about POWER and CONTROL... And making YOU feel LITTLE...
And you are NOT insignificant... You are another human being on the other side of the monitor - and you deserve to believe in yourself.
my bf has hepC....and when we first met over two years ago...he told me he had something..an illness...and was a bit mysterious about it. He told me pretty quickly...within the first week of knowing each other...and at first i was a bit frightened by it...and did research it too.
he is in the music business and back in his teens/ twenties he was mr sex , drugs and rocknroll guy and thats when he got hep C.
So now..not only did i have a guy who had this disease...but also...here i am, straight as a pin...no drugs ..a little drinking..but nothing much at all...and he has hep C from doing iv drugs to boot.
he doesnt do that now and stopped over thirty years ago...but the damage was done.
not only was their the illness that was alien to me...but his drug history too was way out of familiar territory to me.
I will be honest and admit some part of me wanted to run run run from him...because he was everything i was not. and never dared venture towards.
but that heart to heart connection got the better of me..and helped me to see beyond my fear and the "stigmas".
I dont see him as a guy with HepC ..in fact, i really dont dwell on it much ..i just see him as a guy !
the man he is.
sure the disease has its way of intruding and constant reminders of its presence..but i feel compassion for him...
One thing though...i have never told my family about the HepC because i know they would not see past the stigma..and the fear..etc...
so for my benefit..i have kept that confidential.
Its hard enough to be sick but then to be alienated or feel like a reject or something is awful.
You are human beings..and just as lovable as anyone else...
dont let the disease define you.
Thanks for all of your kind words and well wishes. I think that a big part of the problem I am having is that I am having to go through a lot of this alone. My mom and stepdad and the rest of my family (siblings) live in Texas. I have only one close friend here that I can tell, and then there is my son (he is 19) and he is marvelous, and very supportive, but that's about it here. I'll be telling my dad and grandmother here just because I may need support in terms of drivers and whatnot, but they aren't the warmest people in the world. Other than that, I don't have any support and its difficult. I see a psychiatrist every other week. You guys have been very helpful and I appreciate you more than I can say for seeing me through this very difficult time.
You can stare at the tree, or your feet, or whatever and say something like,.... um-oh, um, I am not real sure when I was infected... Which in 9 times out of 10, is the truth with Hep C. That's not a lie (unless you know absolutely when you did get infected), and at the same time, it's not divulging to people, how you suspect that you really got it. There are some people who I can trust and know well enough to where I could share the information that in my late teens, I abused drugs and so on and so forth. On the other hand, I don't want to open up my past to the rejection by others, to someone who is just an aquaintance either. Yea, I know, it's contributing to the stigma. Also, I sometimes just offer up the explanation that "I have a chronic liver disease that's being treated", and leave it at that. I feel that for most people that I meet casually, it's really none of their business. So, that's how I deal with it.
Thank you for your offer! I have alot to learn about posting pictures & blogging. I would love to have you post them if I can get it together & submit them without any of my glitches. I do tend to make things harder than they are. Good wishes to you and everyone! Jenn
You're damn right there is a stigma. I got fired because of my HCV infection and tx. Be very careful who you tell in the work environment. Guard every word and know what your going to say before any discussions. Often times it is HR's goal to weed you out. I know every company is different, but that stigma is difficult to work around.
That's a tough situation and I'm sorry you had to go through it. I have a wife, a daughter and four sisters. If that happened to any of them, I would want to kill the guy.
I just wanted to let you know you aren't the only one who got HepC from being attacked.
It happened to me in 1981 back in the day when I was going to Art school in S.F. and didn't think cocaine could be dangerous, everyone I knew used it at every social function I attended!
I was at a party in a very chic expensive hotel with other people from my Art school and another Art school in S.F. I went to the bathroom I was followed in by the 2 "hosts" of the party. They asked me if I wanted to have a line of coke I said sure. Well it wasn't coke it was Fentanyl, many times stronger than morphine or heroin.
I passed out. I should have died right then but the 2 "hosts" of the party took out their syringe and injected me with cocaine to "wake" me up. When I came to I saw a needle in my arm but I was too groggy to stop and it probably saved
my life anyway.
Since then I have kept that little secret hidden...since 1981. I discovered I had HepC in 2006. Now I am symptomatic and a quick responder but a relapser.
If I dwell on those 2 guys that tried to get me drugged so they could take advantage of me it makes me want to throw up. So I don't. They are probably dead now anyway. They were very rich and related to the Shah of Iran so when I called a police detective to get them arrested, they walked out of jail in an hour with "diplomatic immunity". I had to let it go and move on.
ALAGIRL...How sick are you? Is it HepC related? How long have you had HepC? What kind of symptoms do you have? Have you had a biopsy? Are you under a doctors care?
IOnce it had a name it had a stigma
t's a very strong stigma. And from a treatment decision point of view, I think it's important that we all are honest with ourselves how much the stigma plays in our decision to treat or not, i.e. how much are we factoring in the stigma to the risk/reward equation. Not that we shouldn't factor it in , but always good to be honest with ourselves, especially with the price some of us have to pay in side effects, etc.
I got Hep C in 1969 and knew it because of a very noticeable acute stage. But I was lucky that no stigma was attached until the late 80's when Hep C was "discovered".
Until the late 80's, I would talk about my liver issues (called chronic persistent hepatitis most of the time) as someone might talk about having diabetes, etc. But as soon as I read that Hep C was discovered, I shut up about my liver. Once it had a name, it had a stigma.
Our perceptions of the stigma the general public attaches to HCV does not appear to conform to the facts. I read this poll a couple of years ago the in the national newsletter put out by The Hep C Connection in Denver, I searched through all of my papers to find it, and then discovered its existence of the web.
I think the poll helps to lessen our fear about stigma and to put the topic into a more balanced view.
From article cited by 'Mr. Liver', above: "Although 74 percent of hepatitis C sufferers believe that most people think that the disease mostly afflicts drug addicts and people with unhealthy lifestyles, only 30 percent of the public actually holds this belief."
Of course we'd have to know how the study was conducted but I assume by simple questionaire or interview. 'Real World' stigma works a little differently.
In the real world, no doubt many people initially don't hold opinions one way or another re Hep C, I'm sure many have never heard of it. Problem is once you tell them, often what happens is that they get 'authoritative' information from friends, relatives, and even uninformed primary doctors. The kind of information that supports the HCV stigma.
At least that is the impression I've gotten here by countless anecdotal stories re friends, relatives and co-workers. It's also the impression I've gotten in the few cases I've disclosed my HCV status. First, not much reaction, because again, I found a lot of people just don't know what HCV is. Then later, it's obvious but what they say -- or how they act -- that they've spoken to someone. And for some reason, people seem to believe the (or act) on the most negative sources when it comes to a disease considered communicable.
Whatever the number, the stigma exists, and as the paper says, it's one reason people don't get tested, i.e. if you don't know then you don't have to disclose it.
On the other hand, it can work the other way, as I mentioned earlier. People treating more because of the stigma than because of medical reasons. I'm not going to put any per cent on this, but after reading posts here for over two years, I've definintely had the feeling with some.
Jim - In the real world, no doubt many people initially don't hold opinions one way or another re Hep C, I'm sure many have never heard of it. Problem is once you tell them, often what happens is that they get 'authoritative' information from friends, relatives, and even uninformed primary doctors. The kind of information that supports the HCV stigma.
I think you are pretty close to the mark on this one.
The only thing i would add is that we treat because we believe we are better off without HCV than with it. Stigma plays a part in this assessment.
I think sometimes I worry too much about what people would think if they knew I have Hep C... but I can't take any chances. I live in a small town and have 2 kids. I have a funny feeling that if word was to get out that I had this, let alone that I got it from IV drugs (never mind that it was many years ago)- well I think my kids would suddenly no longer have friends coming over. The parent's would politely intervene and they would always be "too busy". Maybe my kids would be picked on in school for their mom being an ex-junkie- who knows. I hate that there is a stigma attached to this disease, and I admire people like Meki who are brave enough to put it out there, but I am just too afraid. If it was just me, sure, I can face pretty much anything- I tend to get a "f**k em all" attitude- lol. But when it comes to my kids- no way. They don't even know I have it- I don't wanna scare them. When I get them tested I'm not gonna tell them. It's just about the only thing I'm not honest with them about. I went for my liver bx and my son told a couple of his friends. I just told my kids I had to get my liver checked to make sure it was working OK- they know I used to drink and do drug, and that it's bad for your liver. But I made up a little answer in case any parents asked about the bx- that my LFT's are elevated and they just need to rule out any liver problems. And I normally don't like to lie. But if most primary care doctors don't know jacksh$t about Hep C, I can't really expect other, non-medical people to know anything either.
The only people I share about my Hep C with are my Mom, my Aunt, my husband, and of course, you guys. Thank God for you all, cuz nobody else really gets it.
I never cared much about the stigma associated with having HCV. I still don't. If I get asked about my transplant I just say that hepatitis c was the underlying disease. I am my own boss so maybe that colors my lack of sensitivity to a degree. If I worked at a place where having this disease could adversely affect my job I would keep it a secret purely for economic reasons. But otherwise I simply couldn't care less what people think. Those who would arrive at a negative conclusion about someone solely because they have HCV aren't worth caring about anyway- they're just idiots. I think that a lot of HCV patients are way too sensitive about the stigma of HCV and too concerned about the the opinions of fools. Mike
hi and i completely understand your concerns .
For very similar reasons, i dont disclose my bfs HepC status to family or friends because i know the judgement will come down..
Even though he got it more than thirty years ago...
ithink the Iv drug use stigma alone is enough to scare most people..including me , initially.
It was never part of my life, but i tried to not judge my bf because of things he did so many years ago.
While i was open and accepting of him..i didnt think alot of others i know would be.
So, for my own peace ...i have kept it private.
DLR..i think you would probably be correct , that in that small town, they would then start doing things that would only hurt your children.
For all you are going thru..you dont need that too on top of it all!
Each situation is different, and we tell or dont tell for our own comfort zone.
and thats all there is to it.
I absolutely refuse to give in to the stigma. If anybody accuses me of being a doper or something nefarious, I ask them if they've ever driven without seat belts. Most people who got hcv from using drugs were engaging in stupid behavior - just like anybody else who takes risks, and who hasn't taken a risk? Just about everyone who travels to India comes back with some parasite or another. Is there a stigma to giardia?
Perhaps because I can only guess where I contracted hcv (from tools at work) and know that it wasn't from a transfusion or IVDU, I want everybody to ask their doctor for a test so they don't go undiagnosed for decades as I did. Testing for hcv should be as routine a part of an annual checkup as testing for blood sugar. Anybody can get it. Therefore, why the stigma? So I tell everybody, and then I recommend that they ask their doctor to include an order for an hcv antibody test the next time they go for blood work.
Actually, I wish that doctors, dentists, etc., would quit asking me where I contracted it from. They should just be glad that I've told them that I have it and leave it at that. I'm sick of them asking me that question. It doesn't matter where I got it from. I have it and that's all that matters. Every time I do have to answer those questions honestly(and I have to), then, I am stigmatized because then, on out, it's always in the back of their minds, "oh, here's the ex-addict girl". When, the truth is, I only used drugs for a very short period of time in my late teens-early 20's and haven't even had anything to do with drugs in well over 20 years. I don't even consider myself an addict actually, as I was able to stop on my own free will, without intervention or a program and I never had any real withdrawal symptoms. I consider that I 'had a problem with drugs and alcohol' at one point in time in my life. Yes, it messed up my life, big time, at that junction in my life. But, that's in the past. My husband, who is a licensed nurse, has told me that from the other side of the fence, that there is definitely a 'classification' as far as how they will look at a patient who has had a substance problem (admitted to), in their past. So, it is a stigma. In my case, it's of my own doings though.
I feel for you, I wonder sometimes if I am being treated better by doctors, and my work, because people have seen the media reports (newspaper / tv) when my home was invaded - and the subsequent disclosure that this was the cause of Hep C on prision sentencing of my assailant. It's a bit tiring though, as people are uncomfortable around me, seeing me losing weight and hair. Talking to me must be a bit like talking to a friend who has just lost a parent, it is hard to know whether to bring up the topic for fear of causing upset.
Part of the problem may be that doctors want to know the source of infection as they are concerned we may re-infect ourselves. But the source of infection is irrelevant IMO because it is not what we have or haven't done in our past, but what we are or aren't doing now. The really sad thing though, that many of those who used substances had no real knowledge of this outcome.
Yeah - but guys --- I KNOW I DIDN"T get "it" from anything that could even remotely be considered "innappropriate" or "bad". Because I never NEVER did IV drugs or even experimented --- nor did I have that many partners --- and none of my past partners have it... LOL!
I'm no angel --- but ---- none of my behaviors falls into that "stigma" ---- so people who think otherwise...
Well --- LMAO!
They can kiss my patootie!
I think we have the responsibility of teaching the masses --- and WE CANNOT DO THAT if we stay silent --- because we ALLOW others to believe the stigma --- because we don't tell them.
That might be fine Meki, but not eveyone wants to risk losing their jobs, as some have. While no doubt we all want to fight the good war against ignorance, people have to look after themselves and their families as well.
I agree moahunter.....while Meki wants to broadcast it & "educate" people.....I disagree with that.....Is that losing your job over, in particular....The stigma of junkies & drug users is one I cannot be associated with, so it's no one's business but my own & doctors& wife & patooey on everyone else......six months I'll be done, then six months of waiting, then it never existed as far as I'm concerned.....
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