Aa
Should I tell my friends about i have hepatitis?
Other than my immediate family members, i selected not to tell anyone else about having infected with the virus. Now that i am about to go ahead with the treatment, i wonder why i've been keeping my infection secretcy and why i am afraid of being treated differently. On the other hand, i am lonely in doubt and concerns about the outcome.
Please response. i need your help. thanks! SrD
Please response. i need your help. thanks! SrD
You may change your mind once you are stigmatized by this disease. Who do you really want to know the details? What right do they have to know them? I deal with so many peo ple everyday, I certainly don't want or need every person in the world to know. Yeah, I get it that we need to be forthcoming about this disease. Personally, I think it is none of most people's business to know! Yes, if I feel they are wise enough to understand about Hep C, I would tell them. This just isn't the case unfortunately! I actually could care less about who knows, but when you run into ignorant people, why deal with them????? I was too sick to do so.
I haven't started treatment, but I have told a number of my friends that I have hep C and may need treatment. I am very well known in our small city, county and state. I was a city manager for 25 years with the ast 6 years here where I live now. I am now a land developer in the area and I am often in the local news regarding various projects.
I don't see any reason to tell anyone anything other than the truth. I don't like the fact that I have this vrius, but I do. It doesn't make any different a person than I was a few months ago before I knew. While I will not advertise the fact that I have hep C, I will not hide the fact either.
That's me. How you decide to handle the situation will obviously be up to you. But, I suggest that you don't feel embarased that you have a virus. If someone thinks less of you just because you are sick...they have a problem.
Good luck and keep your chin up.
YF
I don't see any reason to tell anyone anything other than the truth. I don't like the fact that I have this vrius, but I do. It doesn't make any different a person than I was a few months ago before I knew. While I will not advertise the fact that I have hep C, I will not hide the fact either.
That's me. How you decide to handle the situation will obviously be up to you. But, I suggest that you don't feel embarased that you have a virus. If someone thinks less of you just because you are sick...they have a problem.
Good luck and keep your chin up.
YF
I don't know about telling a lie...it is hard to keep up!!! We do have a blood disease, we get anemia, we do feel like sh!t, people can tell!!!! When you tell a lie, you have to continue doing so...I found it easier to tell the truth.Perhaps in a round about way. Those that wanted to continue prying into it I could continure with the anemia and the sx, w/o telling the whole thing. There were those I would tell...I actually had a carpet guy who had Hep C too! I tried to counsel him. The sprinkler guy knew my ONC and HEMO, but didn't delve into the reason why I went to these Dr's. We compiserated. His wife had cancer. I guess I had so many people who were at my house often and wondered why I was so sick. I had to be creative, but I couldn't lie. If I lied to so many I would never remember who I told what! So Chemo was true, anemia was true, and I avoided the reason as I didn't like the stigma..so I avoided it, except for those that confided they had Hep C too.....Such a stigma, we know this! It depends on the person. I have had so many people, mainly contractors, home owners assoc etc......you have to have a truth that you can stick too.
lInda
lInda
"For me is how to answer or explain my poor health condition while under tx especially to some whom i deal with on a daily basis but are not friends."
Just to prepare you for this - I found it harder to lie convincingly about my condition than I expected. If you are not a practised liar then you start off trying not to lie but just not tell the whole truth. That totally doesn't work. People smell a rat. They might politely not ask at first but people that you see daily will eventually enquire, just so that they can give you advice on your health.
What you have to do is tell a big whopping lie right up front and right out. Don't mess around with vague stuff and don't mention your liver. Pick a disease that can give you the same symptoms as tx and study it up. Glandular fever is a good one because that can last for a year and make you feel very fatigued. Get all the details right. Be able to tell your story right from the point of diagnosis so that you could fool even somebody who has had glandular fever.
This is the advice I wish I had got in the beginning. A few people wormed my secret out of me because I hummed and hawed and told half truths, all because I didn't feel right about lying. So my message is - go for it with total conviction or not at all.
dointime
Just to prepare you for this - I found it harder to lie convincingly about my condition than I expected. If you are not a practised liar then you start off trying not to lie but just not tell the whole truth. That totally doesn't work. People smell a rat. They might politely not ask at first but people that you see daily will eventually enquire, just so that they can give you advice on your health.
What you have to do is tell a big whopping lie right up front and right out. Don't mess around with vague stuff and don't mention your liver. Pick a disease that can give you the same symptoms as tx and study it up. Glandular fever is a good one because that can last for a year and make you feel very fatigued. Get all the details right. Be able to tell your story right from the point of diagnosis so that you could fool even somebody who has had glandular fever.
This is the advice I wish I had got in the beginning. A few people wormed my secret out of me because I hummed and hawed and told half truths, all because I didn't feel right about lying. So my message is - go for it with total conviction or not at all.
dointime
u wrote: "WHAT is it that you say when it becomes obvious that you are under-going a kind of chemo-therapy? WHAT is it you say when it becomes obvious? "
i believe they are the negative side effects that one might experience while under tx.
i believe they are the negative side effects that one might experience while under tx.
To Everyone,
thanks for posting your comments and sharing your thoughts. i appreciated your inputs.
Like Dointime said: What my reasons are for telling.
For me is how to answer or explain my poor health condition while under tx especially to some whom i deal with on a daily basis but are not friends. i think i have an idea what to do after reading your comments. As for friends, i agree with Harry thinking: this might be a good opportunity to find out who i can trust to continue being on my living trust.
I hope the tx will not be so hard on me, and i become a crying baby to my love ones especially my wife. but i probably will tell a few close friends about this, so they wont be surprised that i might be grumpy, bitchy and unpleasant.
The tx treament length freaks me out. what an ordeal that i am about to go thru. i sincerely hope my wife can hang in there with me throughout this prolonged treatment.
This forum has been wonderful. i am so glad i found u guys. Again, thank you all for your inputs.
thanks for posting your comments and sharing your thoughts. i appreciated your inputs.
Like Dointime said: What my reasons are for telling.
For me is how to answer or explain my poor health condition while under tx especially to some whom i deal with on a daily basis but are not friends. i think i have an idea what to do after reading your comments. As for friends, i agree with Harry thinking: this might be a good opportunity to find out who i can trust to continue being on my living trust.
I hope the tx will not be so hard on me, and i become a crying baby to my love ones especially my wife. but i probably will tell a few close friends about this, so they wont be surprised that i might be grumpy, bitchy and unpleasant.
The tx treament length freaks me out. what an ordeal that i am about to go thru. i sincerely hope my wife can hang in there with me throughout this prolonged treatment.
This forum has been wonderful. i am so glad i found u guys. Again, thank you all for your inputs.
First , i told people i was anemic which was true, i did not elaborate. Once tx. was completed i had a gi bleed, 3 peptic ulcers were found, this explained the anemia. I truly believe riba was responsible for that admission to ICU for a day.
I never found it necessary to tell people I had Hep C before tx. Once tx started and I was really sick it was hard to keep my illness a secret or not tell. Contractors or handymen or some casual friend I would would tell I was on Chemo. Many didn't ask why, but some wanted to know details and what kind of cancer etc. I sometimes had to say I didn't want to talk about it or say it was a blood disease. There is such a stigma about hep c. If we had cancer, I am sure we wouldn't have a problem saying anything about that.
Linda
Linda
So what DID you tell people?????
From what I understand, it is NOT something that goes unnoticed....
From what I understand, it is NOT something that goes unnoticed....
I told my mother and boyfriend. I found this forum after tx, read as much of the post as i can. i chose not to tell the rest of y family b/c i felt they would do a death watch. Friends well thats a whole different ballgame, i did not have the energy or the patience to explain my disease. Tx completed and i see no reason to tell anyone. Reminising about 96 wks of misery is not something i care to do.
your instincts are right, why put everyone else through your personal war of which most will never understand and will not be sympathetic to.
you have to do all the fighting anyway. they might just make it worse.
(and half of those people you tell, will make it worse)
you can hide most of it and make up excuses for the rest.
all great warriors are somewhat lonely and in doubt, thats
what bravery is all about. besides, youve got plenty of battle hardened
comrades here. you will be fine.
it will be a great story to tell after you are done.
you have to do all the fighting anyway. they might just make it worse.
(and half of those people you tell, will make it worse)
you can hide most of it and make up excuses for the rest.
all great warriors are somewhat lonely and in doubt, thats
what bravery is all about. besides, youve got plenty of battle hardened
comrades here. you will be fine.
it will be a great story to tell after you are done.
I am getting prepared to begin with treatment, as well. I have struggled greatly with that very question. To tell, or not to tell....
I decided to tell my mom and my husband. No one else. Not even my children. I know that people at work, my kids, my friends will know that I am "sick", "treating", so I have asked that very question on this message board. Especially when I know that soon it will be obvious, and then- what do I share? what do I say? I have decided to be quite vague. I WILL be going through chemo for my liver. THAT is not a lie. This treatment is chemo. I plan to say that I have been diagnosed with a rare genetic liver disease. I am telling people that I simply do not wish to dwell on it, talk about it, etc. That I enjoy their positive thoughts and energy and know that they care, but that I must focus on being well, not being sick. (my plan goes something like that...)
I think that right or wrong, there IS a stigma. There ARE negative perceptions. I wish I could be someone who is able to spread knowledge and information. Change that stigma. To fight the good fight. I do. However, in my profession, in my life, I simply can not take the chance.
I am still also open to any and all other suggestions that people may have! I know that many have chosen not to tell. WHAT is it that you say when it becomes obvious that you are under-going a kind of chemo-therapy? WHAT is it you say when it becomes obvious?
~l.
I decided to tell my mom and my husband. No one else. Not even my children. I know that people at work, my kids, my friends will know that I am "sick", "treating", so I have asked that very question on this message board. Especially when I know that soon it will be obvious, and then- what do I share? what do I say? I have decided to be quite vague. I WILL be going through chemo for my liver. THAT is not a lie. This treatment is chemo. I plan to say that I have been diagnosed with a rare genetic liver disease. I am telling people that I simply do not wish to dwell on it, talk about it, etc. That I enjoy their positive thoughts and energy and know that they care, but that I must focus on being well, not being sick. (my plan goes something like that...)
I think that right or wrong, there IS a stigma. There ARE negative perceptions. I wish I could be someone who is able to spread knowledge and information. Change that stigma. To fight the good fight. I do. However, in my profession, in my life, I simply can not take the chance.
I am still also open to any and all other suggestions that people may have! I know that many have chosen not to tell. WHAT is it that you say when it becomes obvious that you are under-going a kind of chemo-therapy? WHAT is it you say when it becomes obvious?
~l.
The same friends who would rush out in the middle of a stormy night and drive 100 miles to help you out of some predicatment will often soon get tired of dealing with your treatment, especially if your side effects are bad. I think it was Mike Simon who posted a story about a pastor sermonizing to someone to the effect of don't stay sick more than six weeks, because after that no one will really be around to care. Well, that's the reality many of us faced when treating. If you want to test your friends, fine, but just be prepared to have less friends when treatment is over.
I personally have told VERY FEW people about my diagnosis and treatment.
When I first starting learning about the disease, I read several posts online (not here!) written about famous people with HCV. Holy cow, you'd think we were back in the DARK AGES!!!! The ignorance, incorrect information, nastiness and almost pure delight in trashing people publicly scared the daylights out of me!
Information about HCV spread friend to friend, can end up like the silly game from grammar school called "telephone" where the original message gets all jumbled up and next thing you know there is potentially some crazy story about your life self spreading like wildfire out of control! I vowed I would spare myself the grief of having mud slung at me from every which way... and I very slowly told only about 3 or 4 people about my predicament -- and they have been very understanding and supportive. Other than my boyfriend of many years, I have even told no one in my family. Crazy, huh? The thing is, I really don't mind my family knowing, but I don't trust them to keep it to themselves, and my family is humongous... When there is news in our family, it's like the old cartoons where the crows fly off the phone lines because the lines are burning up with gossip!! :-)
I also have a huge circle of acquaintances because of my hobby and I really wanted to spare myself the joy of walking into a room where people look at me, then turn to their friend and whisper whisper -- who needs it? Or have someone look at me funny when I hand them a plate of food, get into a hot tub, etc. etc. Ignorance is a scary thing!! Imagine how the poor little HIV+ boy in the mid west felt when he jumped into a public pool and they closed it after him!!!! It's heartbreaking really...
My advice is to start slowly if you decide to tell others... Evaluate in your mind if they are 100 percent trustworthy. If there is a grain of doubt, don't tell... Just take your time, really think this through before you start divulging... As Bill1954 said to me, "you can't put the toothpaste back in the tube!" Thanks Bill :-)
PS Having this forum and group of people to communicate with is really wonderful!! How lovely to be able to converse with people who truly understand... It's a mental health saver!!
Hope this helps some in making your decision...
When I first starting learning about the disease, I read several posts online (not here!) written about famous people with HCV. Holy cow, you'd think we were back in the DARK AGES!!!! The ignorance, incorrect information, nastiness and almost pure delight in trashing people publicly scared the daylights out of me!
Information about HCV spread friend to friend, can end up like the silly game from grammar school called "telephone" where the original message gets all jumbled up and next thing you know there is potentially some crazy story about your life self spreading like wildfire out of control! I vowed I would spare myself the grief of having mud slung at me from every which way... and I very slowly told only about 3 or 4 people about my predicament -- and they have been very understanding and supportive. Other than my boyfriend of many years, I have even told no one in my family. Crazy, huh? The thing is, I really don't mind my family knowing, but I don't trust them to keep it to themselves, and my family is humongous... When there is news in our family, it's like the old cartoons where the crows fly off the phone lines because the lines are burning up with gossip!! :-)
I also have a huge circle of acquaintances because of my hobby and I really wanted to spare myself the joy of walking into a room where people look at me, then turn to their friend and whisper whisper -- who needs it? Or have someone look at me funny when I hand them a plate of food, get into a hot tub, etc. etc. Ignorance is a scary thing!! Imagine how the poor little HIV+ boy in the mid west felt when he jumped into a public pool and they closed it after him!!!! It's heartbreaking really...
My advice is to start slowly if you decide to tell others... Evaluate in your mind if they are 100 percent trustworthy. If there is a grain of doubt, don't tell... Just take your time, really think this through before you start divulging... As Bill1954 said to me, "you can't put the toothpaste back in the tube!" Thanks Bill :-)
PS Having this forum and group of people to communicate with is really wonderful!! How lovely to be able to converse with people who truly understand... It's a mental health saver!!
Hope this helps some in making your decision...
I find this question tricky too, and ongoing. When you are not taking the meds you can get away with not telling, but when you are taking the meds it tends to show. So you have the difficult job of either telling, or lying about your obviously poor state of health and doing it convincingly.
What your reasons are for telling is a different matter. If you hope to feel less lonely then you might be disappointed. Other healthy people can't be expected to understand what you are going through. At the same time, it just gets really tiring to be going through a huge trauma with hcv and still behave on the outside as if everything is normal. However, once you tell somebody then it's always there in the relationship and sometimes I just want it to be simple, without this big black cloud in the room.
As you can see, I have no answers for you, just some considerations I've found. I lean towards not telling, except for very close friends that I feel have the emotional capacity to deal with it, and who care about me
dointime
What your reasons are for telling is a different matter. If you hope to feel less lonely then you might be disappointed. Other healthy people can't be expected to understand what you are going through. At the same time, it just gets really tiring to be going through a huge trauma with hcv and still behave on the outside as if everything is normal. However, once you tell somebody then it's always there in the relationship and sometimes I just want it to be simple, without this big black cloud in the room.
As you can see, I have no answers for you, just some considerations I've found. I lean towards not telling, except for very close friends that I feel have the emotional capacity to deal with it, and who care about me
dointime
Yeah... wow.
It's such a personal choice.
I told my CLOSEST friend, and not any others. Just family.
The stigmata can be crushing. Plus, if you gained the disease thru IV drug use, it doesn't help.
The fact is tho...so many are and were infected thru other means.
I believe there is more of an HCV epedemic in this country than what is publicized and there needs to be a voice out there educating the public. Much like the HIV-AIDS campaign.
But, I do understand your conflict.
I am here, pretty much alone, going thru tx with the support of my kids.
I had thought about telling a couple my husband and I are friends with. Then I thought, 'What if they get mad at me for not telling them BEFORE I accepted their invite to sit in the hot tub?'
Do I want to be shunned by them? If I'm not sure how they would react, then are we really close enough for me to divulge something so personal about myself to them?
Like Harry said... ' You will also find out who is a true friend '
Good Luck to you
It's such a personal choice.
I told my CLOSEST friend, and not any others. Just family.
The stigmata can be crushing. Plus, if you gained the disease thru IV drug use, it doesn't help.
The fact is tho...so many are and were infected thru other means.
I believe there is more of an HCV epedemic in this country than what is publicized and there needs to be a voice out there educating the public. Much like the HIV-AIDS campaign.
But, I do understand your conflict.
I am here, pretty much alone, going thru tx with the support of my kids.
I had thought about telling a couple my husband and I are friends with. Then I thought, 'What if they get mad at me for not telling them BEFORE I accepted their invite to sit in the hot tub?'
Do I want to be shunned by them? If I'm not sure how they would react, then are we really close enough for me to divulge something so personal about myself to them?
Like Harry said... ' You will also find out who is a true friend '
Good Luck to you
I didn't tell anyone outside of my mother and husband. I have them, and then the forum to talk to. Some have told friends and it worked out fine. Others have told friends and it has not worked out well. I wanted to tell one of my friends, but for what, she has enough of her own problems. I knew she would worry about me after she started googling and learning about hep c. We are friends from the age of 4 years old (yearsssss ago) and are very close, but I just didn't feel it necessary.
You know your friends and only you would really know best - but it is good that you asked cause maybe someone will help you to decide. Sometimes we need others opinions and experiences before we can make a good choice by weighing it all - then deceiding.
Good luck,
MO
You know your friends and only you would really know best - but it is good that you asked cause maybe someone will help you to decide. Sometimes we need others opinions and experiences before we can make a good choice by weighing it all - then deceiding.
Good luck,
MO
Friends can help you thru the ruff parts of treatment, and help alleviate the deppression. You will also find out who is a true friend thru thid ordeal.
Harry
Harry
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