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Post Info TOPIC: Snubbed!


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RE: Snubbed!
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People are basically good.  They want to say the right thing when something like this happens.  Lots of times they just don't know what to say.  Think about when a loved one dies, how some folks just have an awful time saying 'the right thing' to the family of the deceased.  Same thing with this.  In addition, a lot of people are outright ignorant of hep c, what it is, what it does.   

OTOH, if you ARE being snubbed, well, there's nothing you can do about that.  Letting it bother you takes your energy and focus off the most important thing right now.....getting cured.  While we all would appreciate the support of friends/loved ones, it is not necessarily critical to your survival.  I apologize if that sounds cold, but I tend to think in simple terms.

Survival is the name of the game now.  I would rather be the one snubbed than the one doing the snubbing.

 

 

 



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9/2004:  Viral count 5.8M, biopsied F-2 // peg-intron/ribavirin 2005, did not clear.

3/2017:  Viral count 3.3M // Fibroscan 4/18/17, TBD

planned protocol Harvoni/Ribavirin

Tig


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Having just lost my Mom on Valentines Day (of all days), I'm still receiving calls and messages about her passing. It's not what we say as long as we say something considerate and timely. I know what you mean though, it's hard to find the words sometimes. As a recent recipient of those words, I found myself appreciating the person's kindness as much as, or more than the words themselves. 

And yes, people can be weird... wink



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Tig

66 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 8+ years!

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Senior Member

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People get weird when their friends and family get sick. A really good friend of mine totally broke off all communication with me when I told her I has been dx's with MS.

I called her up and asked her "WTF, is up?" She admitted that she was uncomfortable about my diagnosis, or some thing like that. She never did come around. Then again, I know a lot of people who got too chummy, and had lots of "good advice" for me.

Like I said, people get weird.

The one I have trouble with is when people die. I never know what to say to the survivors. Everything sounds so trite. So I just clam up.



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Lamont Cranston "Only the Shadow knows."

70 years old, retired IT Network support 33 years continuous sobriety in AA, ,DX'd in '99 with MS, DX'd with HCV 2, 2b , F0-F1 3/17/2017 VL 5.7m Started EPCLUSA 7/28/17

No Virus Detected on November 20, 2017 3 months after EOT



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Rule of thumb.

 

You cannot be snubbed by anyone that matters.

You will never be snubbed by anyone that does.

JimmyConfusiousK

 

winkSee, ya made me tell my middle name.



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



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I think that a lot of people just don't know what to think, don't know how to react or what to say. "Online people" tend to remain silent when they are unsure, people I've told face-to-face don't have that luxury, and usually try to say "something", even if they are feeling uneasy. Then, you can see 'what's up' with them, and in turn continue to communicate your HCV story to them.

Don't feel bad, just know that you are who you are, and you will be super after finishing tx.

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"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 



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Hi Diana,

 

One other thing to consider is that sadly most people don't know much if anything at all about HVC so they may not know how to respond properly. You can in fact if you want to discuss it with them and get some feedback, educate them on it. That should put them at ease and at least open the door for further communication.

Personally, I told very few people because I did not feel there was a reason to but that was my personal choice and we are all different.

I hope you can feel better about it soon and not worry about what some others may think or not due to lack of knowledge on their part.

 

SF



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65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *

Tig


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Hey Diana,

Trust me, most of us have dealt with the stigma in one way or another. Even the fear of the response from others fuels concern. Some people don't care what others think,but for many it's a reality. I can't recommend a course of action, because each situation is different or fluid. Seems to me if you can provide accurate details to those you're ready to inform, the diagnosis is met differently. Some that read the ugly misinformation harbored by the ill-informed are difficult to reach. The whole stigma thing has gotten much better, but there are still concentrated pockets everywhere. Your best weapon against it is knowledge and thick skin. Share it with those willing to listen to the truth and do your best to brush off the hurt from those that refuse to listen.

I'm sure others will chime in here. We all have dealt with it in one form or another and we will all continue to do our best to inform the uneducated. Here's some info from the HCV Advocate you should review:

Stigma and HCV



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Tig

66 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 8+ years!

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Is anyone else dealing with this kind of thing?

I've told very few people that I have Hep C: my husband, my children, my sister, and my ex-husband's wife (perhaps surprisingly, we are friends and I think she is a wonderful person). More recently, I've sent private messages in FaceBook to 4 people who are fairly close relatuves or whom I've known for years. I've told them about my diagnosis and what's going on with me. While my tone wasn't all sweetness and cheer, I wasn't completely down in the dumps about it either.

This was weeks ago, and NO ONE has said a thing. No replies at all! I know my messages have been read because fb tells you that, along with the date. They still seem to think I care about what they're doing in freaking Farmville, but not a word of sympathy or even acknowledgement.  is the hep c stigma truly that bad? Do they think I was a secret heroin addict under my mask of professionalism and they cant deal with that? That I am now  a "dirty" person with a dirty illness? 

I'm seriously thinking of from now on telling people I'm being treated for stage 1 breast cancer instead of hep c.  Unlike hep c, "nice" people get breast cancer (sarcasm). I really might do it. I bet I'll get a flood of sympathy and immediate offers to help out. I could definitely use both, but it looks like neither are forthcoming if I tell the truth and disclose my "gutter" disease.



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HCV genotype 3b, started my 12 weeks of Sovaldi/Daklinza on 10/15/16.
Probably infected 1 - 2 years ago, viral load 800,000, fibrosis stage 0.

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