I had a sister die of a stroke about 10 years ago, a sister die of cancer and going through a year and a half of chemo.
It is just me and my parents (80 and 90) who live about 45 minutes away. I really don't want to have to tell them I have hep c until I start treatment, and then postpone it until it is really necessary. We are the only immediate familly left. My sister that died of cancer, died about 3 years ago, but it was an ordeal. The last 6 months were really rough.
Has anybody been through that, not telling, or wishing you hadn't or had.
I've gone to great lengths to educate my family. To way lay their fears with logic.
Stigma & Transmission are huge things for them. My niece has been trained not to kiss nor accept food from me. She's almost 9 and has never spent any length of time at my house, and never unsupervised.
I think for my eldest brother it's easier for him to push me away now on the basis that it'll hurt less later, worst come to worst. My mother died from cancer, I filled that gap. He doesn't want to have to ever watch someone he loves suffer, or risk illness to his own.
I've become the family's dirty little secret. They're all terrified that I may ask them for help, need them in some way. Show them up to the in laws or their friends.
It scares them even more that I don't/haven't asked.
The subject gets changed pretty quickly if someone outside the family asks how I am.
Golly this sounds self pitying, when it's them I feel sorry for. Meantime they are missing out on their own nephew and nieces.
So yes there's days I wish I'd never opened my mouth, especially if I look back and can see how much more "normal" time I would have had with them and been able to carry it off.
But I know they would have spent the rest of their lives angry at me had I said nothing and then lost it to one of the wars with pneumonia or toxic shock.
Your situation is very different from mine William, I wish you all the best for the road ahead.
I am just so sorry that you have to go through this. It's not right that people and their prejudices and bigotries and all of that SO mistakely think that they are going to catch a disease this way. Pretty much ANY disease. You are obvious quite a strong person to be able to handle this all. I was very very lucky and my family had absolutely no fears regarding them once we learned about the disease. I can't imagine how hard it would be on me - I'm a big mouth huggy Italian girl, it would have been very difficult.
Let alone having to deal with the disease itself! Why does your brother think you are going to die of this? Doesn't he realize that most patients never die of hep but of something else?
Have you tried to have them meet with a doctor who can explain it if they just won't believe you or are they just too hard core "I don't care"?
There is no reason you have to tell them anything. If you are going to do treatment you can always say you are anemic or something else if you are that worried about it. I just told my co-workers I was on chemo (doesn't work for you though!) and I told my bosses the truth and they knew what it meant.....not too much to them as long as I came in.
Some people have very little evident side effects from treatment. Do you know what stage and grade of the disease you have? (How much liver damage you currently have). It's a personal decision and only you can decide when to treat. If your family can't mentally handle the consequences than if you can wait perhaps you should - or treat and just don't tell them since you don't live with them.
Good luck to the both of you. The good news is that I treated for 72 weeks and beat the hell out of this diesease. I am now undetectible for 15 months which means I am SVR and cured.
I think it pretty much is based on how close (emotionally) you are to your parents.
I told my folks early on cuz I learned in the past, that they always "knew" something's going on anyway when I had problems( even though I thought I covered it quite well). The mind can come up with lots of worst case scenarios when not provided with the facts.
If they're involved in your life and supportive, keep them there and help them be part of the game plan.
I've been dis-owned by my family for several decades for not asking how high when they would tell me to jump. And I always was the black sheep as a product of my mom's (aka: egg doner) first marraige.
Just goes to show how ignorant and / or niave people are, or choose to be.
What choice is the most wise and comfortable for you?
Sometimes we forget we have the option of taking care of our own needs first.
Not to sound selfish - however if you don't take care of youself first, you may not be able to take care of others if and when the situation presnets itself. Not trying to sound holier than.....just basing on my own 50 yrs of experience.
Man what a tough one. I understand totally why you hesitate. Like NYgirl says it really depends. No one knows your parents more than you. I made it through treatment without telling most people. I did tell my immedicate family but we did not have the same situation as yours does. How long are you treating for?
i told everyone ...just didn't hide it....the alcohol and the hep c...but now i wouldn't tell just anyone...but i would tell my sisters and my parents...it did take me a while to tell my parents..i think a few months...their in their late 80s....i really don't think they get it all the way..i told them 2 years ago and my mother the other day said she thought she would look up hep c on the net...thats after 2 years...when folks hit the mid 80s they have seen so much that it isn't a real big deal to them...so i would say tell them...i would always want my kids to tell me whats up...just try to not whine about it .......and don't be surprised if they do't understand hep c.....good luck...billy
HBO's current series on one of our founding fathers? John Adams? In one scene he says...
"People are in need of strong governance. Most men are weak and evil and vicious," he observes.
Well, Mr. Adams is probably exaggerating, "a little" lol...but come on, many people are kinda selfish, petty, snobby and looking out for number 1...if someone is in need, or is dealing with something that they don't understand, they might react with any number of bad reactions...they barely have any compassion for themselves, so it's that much harder for them to have compassion for someone else....whether these people are in their immediate family or not. And of course, we can pick our friends but we can't pick our families.
So these types of people are not just in one person's family, they are in most everyone's family, your lucky if you only have a few of them to deal with...I don't know about anybody else, but I have some full fledged whako's in my family...that's not including myself! lol....
I have a friend who was raised like people in a nice sitcom in a big, beautiful house, everyone is soooo nice and not dysfunctional at all, at least on the surface....kind, intelligent and big hearted, etc...when I go to his house, I feel like I'm watching TV...lol.....
The really good thing is there are really wonderful, kind, compassionate people out there, we just have to find them. I know plenty, but it wasn't always easy to find them. I'm really sorry for any one of us who have to deal with selfishness or pettiness from people in our families or elsewhere....but it's great to know that we can forgive and leave the room if we have to, and not willingly subject ourselves to any kind of hurt or embarrassment. After that, call up someone who really cares, here's to all the "Good Eggs" out there!
I decided to not tell my mom about having Hep C or about beginning treatment. She knows about and has lived through my problems with alcohol and drugs. She's in her mid 70's and I know that she would worry herself sick. She's had enough heartache already. It's hard because she now lives with us, but I'm grateful to G-d that I haven't had such a rough time with side effects.
I have tons of support in my recovery group, and they know exactly what's going on with me. That's enough for me.
i just called myt parents and told them and they go..oh, but they were good about it.. they just said they need to get educated and i told them it was blood to blood pathogen and explained, and they are so supportive in everyway.. they call me all the time.. my parents were so understanding.. they still love me the same, but it is hard when u have to tell ur parents... but a mothers love should never change for u or anyone, but u cannot change peoples thoughts just pray they will understand when u tell them.. I could never live knowing i was lieing to my parents about a disease that is chronic... May GOD LEAD U THRU it. . .
Quote:nygirl7 "Have you tried to have them meet with a doctor who can explain it if they just won't believe you or are they just too hard core "I don't care"?
Meet with a Doc?..heh, they aren't able to find 'time' to give me a ride to A&E. I've heard some real pearlers from them over the years. You just have to laugh.
I'd like to thank you all for your warmth and support.
I really do believe my family loves and cares for me, from a distance albiet.
For them I think it's more that I raised them, stepped up when Mum was sick and took on the household, nygirl you called me strong. Personally I think stubborn might be a more suitable definition. But perhaps that's how they see me too. Strong.
If the strongest member of the pack falls or falters then all that follow will be forced to question their own strengths.
I like to believe that their actions speak more of their own fears than their actual feelings for me. I won't deny that it's a painful issue, in the end I chose to be alone rather than lonely and put half a country between us.
Forseegood is right there are many warm and compassionate people out there, I've been fortunate in my finding. We have a 'Whanau' an extended group of people who have chosen to love us. They act as uncles & aunts, grandparents, sisters, brothers, friends and role models. The children trust them in a way my own family will perhaps not come to know. However I may struggle these people will step forward and be there for us all. Who could ask for something more than that? All I've ever wanted was for someone to be there loving them as much as I do. At the end of each day I am still a fortunate woman.
Wishing you all good fortune.
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