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HCV contamination in news and stigma associated with it
I just wanted to post on this subject since it has been mulling around in my brain for over a week.
There have been many posts over the years concerning the stigma associated with Hep C. Many people have commented on lots of threads about whether to tell people you are treating, what to tell people, who to tell, etc. Some people decide to just be open about it and some don't. Neither position IMO is wrong but a personal decision we each make.
I personally decided to only tell a very select few. My family, a few close friends at work since my treatment would impact them and that is pretty much it. I spent a lot of time coming to my decision and for me it was the correct one. I have young children and was very active in the community and ran a local youth sports program. My decision is mostly based on the fact that people talk, are ignorant about things like Hep C. Being that I ran a local sports program and when it comes with dealing with their little johnny can get really ignorant. I have younger kids I did not want them to have to deal with all that if they did not need to. The following just helps confirm for me my decision on who to share with and who not.
Recently their was 2 stories in the local papers. The first story had to deal with a local dialysis unit that has found 15 patients since 2005 that contracted HCV as a result of their dialysis treatment. They are investigating trying to find the direct cause.
The other article was about a VA hospital in Miami I believe that has now reported 5 patients who contracted HIV and 33 with hep C as a result of endoscopic procedures, and improper cleaning of the equipment (scary is this day and age).
What beings me to mention this (besides the fact that this is still happening in this day and age) is that my wife was at work. She heard someone mention all the news about the swine flu. The person who she was talking to said "yeah I heard about that but did you hear about the Hep C outbreak!" ....OUTBREAK, she was referring to the earlier article about 15 cases reported since 2005.
Later that same day I was talking to someone who commented on swine flu and said some ignorant comment about getting it from pigs (kissing them). I then attempted explained that is not how it is transmitted and that I saw an interview on TV where they traced it back to patient zero. to which they replied. You can trace the AIDS virus back to some African having sex with monkeys too. I decided right then and there that the conversation was over. You really can not reason with that kind of mentality and level of ignorance. Scary to think that so many like this walk among us (and procreate too).
Anyway Through my entire treatment I did as many have and still do. I forged ahead pushing through all my sides from the meds. I would do what I refer to as "Giving good face". No one ever knew I was sick, treating, or how horrible I would be feeling from this treatment. I finally decided after talking it over with my doctor to take the final 5 weeks off work. This decision came after a car accident that I attribute to my brain fog (that was a previous post).
Now when I return in another couple weeks I will have everyone wondering where have I been and all the rumors that I can only imagine have spread. I still at this point will just tell people that I am fine and was dealing with some personal issues, and just leave it at that.
I just wanted to share that as it bothered me for a few weeks.
There have been many posts over the years concerning the stigma associated with Hep C. Many people have commented on lots of threads about whether to tell people you are treating, what to tell people, who to tell, etc. Some people decide to just be open about it and some don't. Neither position IMO is wrong but a personal decision we each make.
I personally decided to only tell a very select few. My family, a few close friends at work since my treatment would impact them and that is pretty much it. I spent a lot of time coming to my decision and for me it was the correct one. I have young children and was very active in the community and ran a local youth sports program. My decision is mostly based on the fact that people talk, are ignorant about things like Hep C. Being that I ran a local sports program and when it comes with dealing with their little johnny can get really ignorant. I have younger kids I did not want them to have to deal with all that if they did not need to. The following just helps confirm for me my decision on who to share with and who not.
Recently their was 2 stories in the local papers. The first story had to deal with a local dialysis unit that has found 15 patients since 2005 that contracted HCV as a result of their dialysis treatment. They are investigating trying to find the direct cause.
The other article was about a VA hospital in Miami I believe that has now reported 5 patients who contracted HIV and 33 with hep C as a result of endoscopic procedures, and improper cleaning of the equipment (scary is this day and age).
What beings me to mention this (besides the fact that this is still happening in this day and age) is that my wife was at work. She heard someone mention all the news about the swine flu. The person who she was talking to said "yeah I heard about that but did you hear about the Hep C outbreak!" ....OUTBREAK, she was referring to the earlier article about 15 cases reported since 2005.
Later that same day I was talking to someone who commented on swine flu and said some ignorant comment about getting it from pigs (kissing them). I then attempted explained that is not how it is transmitted and that I saw an interview on TV where they traced it back to patient zero. to which they replied. You can trace the AIDS virus back to some African having sex with monkeys too. I decided right then and there that the conversation was over. You really can not reason with that kind of mentality and level of ignorance. Scary to think that so many like this walk among us (and procreate too).
Anyway Through my entire treatment I did as many have and still do. I forged ahead pushing through all my sides from the meds. I would do what I refer to as "Giving good face". No one ever knew I was sick, treating, or how horrible I would be feeling from this treatment. I finally decided after talking it over with my doctor to take the final 5 weeks off work. This decision came after a car accident that I attribute to my brain fog (that was a previous post).
Now when I return in another couple weeks I will have everyone wondering where have I been and all the rumors that I can only imagine have spread. I still at this point will just tell people that I am fine and was dealing with some personal issues, and just leave it at that.
I just wanted to share that as it bothered me for a few weeks.
If you don't want people to know something tell no one...
I also only told immediate family and a few good friends and asked to please not tell anyone else. Well my family kept their mouths shut.However one girl friend said one day my mom is praying for you and her son was just devsstated when she told him. I was furious.
Then one of my best girlfriends husbands told his brother who in turn told one of his friends and while at a B.B.Q this guy I had meet only one other time wants to know how I got Hep-c again I was furious
It has put a strain on both of these very old friendships they just are not the same.
I never told any one at work and now am very glad I did not.
IF YOU DON'T WANT SOMEONE TO KNOW SOMETHING TELL NO ONE.
Words to live by no matter what the reason.
SSHHH Hopeful51
I also only told immediate family and a few good friends and asked to please not tell anyone else. Well my family kept their mouths shut.However one girl friend said one day my mom is praying for you and her son was just devsstated when she told him. I was furious.
Then one of my best girlfriends husbands told his brother who in turn told one of his friends and while at a B.B.Q this guy I had meet only one other time wants to know how I got Hep-c again I was furious
It has put a strain on both of these very old friendships they just are not the same.
I never told any one at work and now am very glad I did not.
IF YOU DON'T WANT SOMEONE TO KNOW SOMETHING TELL NO ONE.
Words to live by no matter what the reason.
SSHHH Hopeful51
We hear more about1000 people a flu than we do about 200 million with a deadly disease,..something is not right
Awesome point - and a mild flu to most Americans at that. No transplants or death involved. Like I always have said - the healthcare system doesn't want to pay for the avalanche that they would receive so.......they just don't talk about it. Nice.
Awesome point - and a mild flu to most Americans at that. No transplants or death involved. Like I always have said - the healthcare system doesn't want to pay for the avalanche that they would receive so.......they just don't talk about it. Nice.
We hear more about1000 people a flu than we do about 200 million with a deadly disease,..something is not right
Great post Dragon, as always!
I was one of the people who told everyone, my boss, the people I worked with, all of my family and pretty much anybody who asked me if I was sick!
I was lucky to have adult children and didnt need to deal with the playground parents. (Had they been younger I might have done things differently)
I did get the look a couple of times, and proceded to explain to them how hep c is transmitted. Whether or not they listened or even cared, I will never know, whether or not they where/are talking about me again I will never know.
The bottom line is ignorance will never change! We all do what we need to do to get through treatment.
Dragon ~~ How are you feeling now that this is you last week???
peace
rita
I was one of the people who told everyone, my boss, the people I worked with, all of my family and pretty much anybody who asked me if I was sick!
I was lucky to have adult children and didnt need to deal with the playground parents. (Had they been younger I might have done things differently)
I did get the look a couple of times, and proceded to explain to them how hep c is transmitted. Whether or not they listened or even cared, I will never know, whether or not they where/are talking about me again I will never know.
The bottom line is ignorance will never change! We all do what we need to do to get through treatment.
Dragon ~~ How are you feeling now that this is you last week???
peace
rita
I told everyone...I want them to know it is out there and and there is a very good chance that someone they know and love has it right now! I ask them if they've ever had a blood transfusion before 1992, or when they had a baby did they get blood...or did they ever have surgery and get blood...and maybe not even have known about it!!
I want to educate those who ask and those who don't or are "idiots"...well, that is their problem. I want people to ask their doctors to be tested...the docs aren't going to recommend it. I ask people if they had a tattoo or ever snorted cocaine, even once.
I only came across one situation since 1997 when I got the diagnosis, in which someone was worried they might get it from me. That lady was old, had HepA as a child and was worried, and she was ignorant about many, many things...so that's her problem.
I figure it's part of my job to make everyone aware of the HepC since the doctors and the government aren't doing it!! If I can save one person...then it is worth it to me.
I understand those who chose not to tell...each individual deals with the "stigma" differently and are in different situations job wise so this worked best for me.
My mother started the first Fibromyalgia group in Dallas...back in 1980's...when nobody knew and/or diagnosed it but the same amount of people had it then that do now. Thank goodness she spoke up...even went to Wash. DC to try to get funding for Fibro research!! I feel she made a difference! Most doctors thought it was "all in her head"...most of the family did too...and still does all these years later.
Education is key!! We've got to get it out there for people to see and hear about...and to get tested!!!
But that's just me...I've never been afraid to be different. It takes all kinds to make the world go round...all kinds!! Even the ignorant pig kissing fools!! lol
I want to educate those who ask and those who don't or are "idiots"...well, that is their problem. I want people to ask their doctors to be tested...the docs aren't going to recommend it. I ask people if they had a tattoo or ever snorted cocaine, even once.
I only came across one situation since 1997 when I got the diagnosis, in which someone was worried they might get it from me. That lady was old, had HepA as a child and was worried, and she was ignorant about many, many things...so that's her problem.
I figure it's part of my job to make everyone aware of the HepC since the doctors and the government aren't doing it!! If I can save one person...then it is worth it to me.
I understand those who chose not to tell...each individual deals with the "stigma" differently and are in different situations job wise so this worked best for me.
My mother started the first Fibromyalgia group in Dallas...back in 1980's...when nobody knew and/or diagnosed it but the same amount of people had it then that do now. Thank goodness she spoke up...even went to Wash. DC to try to get funding for Fibro research!! I feel she made a difference! Most doctors thought it was "all in her head"...most of the family did too...and still does all these years later.
Education is key!! We've got to get it out there for people to see and hear about...and to get tested!!!
But that's just me...I've never been afraid to be different. It takes all kinds to make the world go round...all kinds!! Even the ignorant pig kissing fools!! lol
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