What do you tell people......

[wantalivlong]

......when you are tx.  Other than family and close friends that are there for your support, you may have people that notice changes in you and are prompted to start asking questions.  Since a lot of people here have are tx or have been through tx, I appreciate your input on this as I'm going in and pondering how I might answer.

Seens to me most would be more concerned with HOW got it instead of supporting you through the tx.  Just guessing but am I right?

Thxs

[jt57]

I don't care who knows.  It is the truth.  People need to understand what hep c is.  What the treatment is.  Why we so desparately need a cure!!!!

There are some people that probably are really "talking about me" and my hep c.  I don't care.  In doing so, they have made it their issue, not mine.  

There are some people that have not been as supportive as I was SURE they would have bee.   .......so glad I found out who they are!


There are some people that have surrounded me with so much love and support....and I never would have guessed it would have come from them.......   so glad I found out who they are, too!

We really need to stop caring what people think.  In the work place, we are protected.
With the people that TRULY love us....we are protected.

and like they say..."the ones that matter, don't care.....the ones that care, don't matter!!!"

Jean

[epiphiny]

Yes, I have that a lot also.  People say 'you're looking great' and yet I am feeling like c**p.  I hate to think what I used to look like pre tx.  Scary thought and probably best I don't know!

[DragonSlayer45]

The one thing that has amazed me the most while I am treating is that even when i feel bad, which is all the time. No one can tell. I look at myself in the mirror and I can tell. Just by looking at my eyes, but yet no one has a clue. Not that I am sick or treating.

[wantalivlong]

I tend to agree with you.

Some very good answers to ponder....

.......rectal cancer... thats a riot..LOL

Thanks guys

[ALPHA80]

Hello, I'm new here. I just wanted to mention that even when your closest friends, family and especially work & co-worker are concerned, remember there is a stigma involved with hep-c. Most folks will put you in the "acquired by lifestyle" category and possibly be less understanding than need be. I know it's bad to hold things i, but it's also equally hard to deal with the the reaction you may get from your inner circle as well. If you say you've been recommended to undergo chemo by your physician and leave the details of this as personal, folks will give you room to breathe.

[Rockerforlife]

They wont tell or go to his job directly...but you know the way things have a way of spreading around...all it takes it the one big mouth...BTW....my sides are pretty much same as last time...slight headaches and eye pain after shot nite that lasts for 2-3 days..but my nose this time is pretty dry and raw  inside...nothing seroius...im using lots of stevia and cocnut oil and it works....thats it  and my eyes get pinkish color after shot too....IM LUCKY

[Marcia2202]

I don't think his close friends will go to his job and tell people there.

Hey, how is tx going bro'?

Marcia

[Rockerforlife]

You say you told close friends?...and family...sorry...but dont be surprised if you worll place knows aleady...close frieinds have big mouths too...if you get the funny feeling they know at work?...they know.

[fretboard]

I have a similiar situation as I think if I tell the ppl I work with, it would not be in my best interest at all and I may be moved from the work I currently do, not something I want to do.  I told my one boss, the one that was buggin me like it was any of his business that I had a blood disorder.  I've actually been told by my old doctor not to tell anyone at work.  I think I may try joking around with it like telling ppl I have cancer of the testicles and I don't want to talk about it. lol  That would shut up some, but not all.  Unfortunately a lady I work with just went thru chemo within the last 6 months for breast cancer and she told everyone, including me.  Including more than I wanted to know, she will probably be the first one to get the cancer of the testicles excuse.lol  I'm still at the stage where I don't know what I'm gonna do.  Oh I have told close friends and family, I work in a gossip central, back stabbing environment.  It's a civil serviice job, so that's expected.  good luck    

[Kristina538]

I started treating without even telling my son (who knew I had a pre-cancerous condition).   Now, my partner, brother, son, cousin and one girlfriend know about the HVC.  

I took time off work for a type of 'chemo-therapy'.  My boss prodded for information and I said I wasn't prepared to discuss it when I hadn't even discussed it with my son and she would have to 'bear with me' as I didn't want to bring my personal stuff into work where I liked to concentrate on my work!!!    I've told the same story to friends.    

The people who continue to ask are doing so for themselves, not you..... so if pushed the 'rectal cancer' story sounds good and I may just borrow it!!!  

The people who ask few questions but offer assistance are the people who are going to be supportive.   You really need your space right now and don't need the extra mental pressure of other people's reactions.    

My partner felt a little 'isolated' during the first 4 weeks of tx, and we discussed who he could share his feelings with....one of his close mates knew I was on 'chemo' and that helped.   He's managed to come through without having to 'share' further.

I, too, would like to share my HVC status with the world.  However, I'm not up to explaning or defending the cause or justifying any part of my amazing life and don't want my family subjected to HVC political discussions either.   The important thing for them at present is my health, not my disease.    

[Isobella]

For me in the beginning, that would have been a very plausible excuse!!

I do have to jump on the FLGuy bandwagon...tell as few as possible.  Great advice.

No one at all would ever guess I was "sick"  (as long as I keep my eyebrows mowed, lol)  I wish I had told no one other than my husband and daughter.

good luck to ya =)

[jdwithhcv]

Believe me, it stops the whole conversation!

[Rockerforlife]

Cancer of the rectum?....Good thinking....id love too see the look on there faces after that remark.

[Trinity4]

Seriously, only my immediate family knows.  I haven't told anyone at work even though they suspect something is wrong.  Hell, I look like charlie chicken head.  It's worked so far and I've tried to keep things as close to normal as possible at work.  If I have a bad day, I just don't participate in the water cooler conversations.

FlGuy you nailed it:  "Treatment can be a lonely experience and I think it's best to keep it that way.  Overall; just suck it up, stick with it, get through it and put it behind you. Sympathy, empathy and curiosity don't kill virons."

Trin

[Trinity4]

Mike
"Hell, just tell them you have rectal cancer. That makes everyone stand back and they don't ask a lot of questions about that disease either. "

LMAO  I think I'll use that one -  they aleady know I'm I pain in the a-s-s anyway.

[CMcH]

I told close friends and family and they have all been supportive. I also told my Supervisor and close co-workers. They were supportive but unfortunately my Sup who everyone is trying to get rid of, couldn't keep his mouth shut. I work at a hospital so he should know better. Just know if you tell one person it is pretty much open season.
I have mentioned when I need to go and get labs that my Thyroid is out of control and has to be monitored. That part is true no need to go into further details.

[kitkat14]

I told my close friends, my dad, one co-worker, and my boss.  All have been supportive except for my boss.  

I didn't want to have to tell him my business because I knew he was not a "people person".  But I didn't want to leave it to chance that I would get really sick while treating and he would do what he could to have me fired as a result.  So before I started, I saw a Human Rights Lawyer and she advised me to tell him and our Human Resources department so that they had it on file.  That way, they'd be too "embarassed" to let me go while treating.  I've been with this organization for 18 years so its the least they can do.  Note:  I live in Canada.

If anybody else asks why I look tired, etc I mention menopause and that usually shuts them up.  Sorry, I know its not an excuse you can use.

k

[H20Lover]

I am post tx nearly 6 months, but while on treatment I never told a soul except my hubby.  I was a lucky G2 that only had to do 6 months.

No one at work had a clue.  I lost weight and they said I looked great.  I have an office job though and not a physical job.  I did not miss one day of work.  

I felt it was no ones business and I did not want to be pittied or treated special.  I don't like pity one little bit.  I think if people knew they would "look" for stuff.

Had I "showed" I suppose I would have gone with a very long case of the flu!

I would just play it by ear and see how it goes.  I hope you too are a lucky one!

Pam

[jdwithhcv]

I just told people what was up - family, friends and colleagues.  I figure the more people learn about hep c the less stigma will attach to it.  Besides, I already used up the rectal cancer line when I had rectal cancer!

jd

[epiphiny]

I told all my family and close friends including my colleagues that I work very closely with on a daily basis as I knew it was going to be very apparent that I was "on something" and as I work in film and television I knew people would make some pretty wild assumptions.  I have had nothing but amazing support from those closest to me.

I told some people I was taking part in a study to help people who had Hep C and that I had offered myself to medical science for the greater good.  I found that kept that gossip mongers shut down and people were supportive without any sickening sympathy.  I really didn't want sympathy just some understanding from time to time.

I have wanted to tell people as I think it's important to raise awareness of the virus and to dispel the myths and stigma that some uninformed people attach to it.

Having said that there are some people I've never told as I simply didn't trust them and if something ever came up I would say I had an ongoing medical condition that I was currently working on.

It's all good so far but I do think I am fortunate to be surrounded by some pretty enlightened people.

Epi.

[Marcia2202]

I personally told all my family, friends and also some other ppl I know. I have not had 1 bad reaction, ppl are compassionate and supporting me however they can from all over the world. I am blessed to have such a great and loving support group. Today my eldest son's girlfriend came to cook food for me. She told me again, that I can call her whenever I need some help.

If you are surrounded by loving people, you will get a lot of support.

If you feel that people will judge you and not be positive, don't tell them. I feel it is a quite individual thing. The honest way worked for me.

Marcia

[meakea]

One more thing...

Initially, my plan was for me and my hubby to just tell our kids and keep it from everyone else.  That didn't last long, however.  My hubby decided he needed to confide in one of his sisters so he told her but he also instructed her to tell no one because we were telling no one.  She ended up telling other relatives and then I learned through the grapevine that people knew.  That made me feel very creepy because it was not ME that was able to tell people, rather it was people talking in hushed voices behind my back..."don't tell anyone" kind of stuff.

So, I took the bull by the horns and I took my secret back and I started telling everyone (family, close friends and co-workers) one by one so that I could be sure that they all understood the disease and if they had any questions or concerns they could ask me personally.

I had no bad reactions from anyone that I told.  My only regret is that I started it out as a secret that a "not-so-trustworthy" sister-in-law gave away.  

[meakea]

My way was to just tell everyone (family, close friends and co-workers) that I have Hep C and I gave a short explanation of the disease and the TX.  Then I didn't have to worry about making things up.  It worked for me but I know it doesn't work for everyone.

[jdwithhcv]

That rectal cancer line will shut them right down!