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How do we make others understand? and OPEN Thread
We have had alot of discussion on here about sides of the disease, sides of the Tx, sides of the Tx for the sides..etc..
I am looking for SERIOUS suggestions here..because I am truly at the end of my rope...
HOW do we/I make family/friends UNDERSTAND how serious (1) this illness is, (2) the Tx is, (3) how bad the drugs are, (4) how bad sides can be, (5) complications and lasting effects.
With all the medical knowledge that I have, I just cannot seem to make them understand. They act like I have a cold and it's nothing!
It seems that no matter how I try to explain it to them, they say stupid stuff like," Oh just take your medicine and you'll be fine in a couple months". or.. "You need to go get a job."
With 3rd stage cirrhosis, and labs that look like several months into tx with the low platlets, high clotting time, low rbc's...I am weak,exhausted and I can't do much of anything.. I feel like this before I have any of the drugs in me, so when I start, it will surely be much worse.....
I qualified for SSI in May, in less than 3 mo. on the FIRST try!! Anyone who has ever tried, knows it is not easy to get SSI.
I have always been the caretaker type, always doing for everyone else, never making any time for or demands for myself, but always making many DEMANDS ON myself, no matter what it took. and YES, THAT is MY fault! and now, when I really need some help, I can't seem to get any.
My meds are in the fridge, but I can't start yet,and frankly, I'm about ready to just F*^@*#*^ give up! Any ideas?
I am looking for SERIOUS suggestions here..because I am truly at the end of my rope...
HOW do we/I make family/friends UNDERSTAND how serious (1) this illness is, (2) the Tx is, (3) how bad the drugs are, (4) how bad sides can be, (5) complications and lasting effects.
With all the medical knowledge that I have, I just cannot seem to make them understand. They act like I have a cold and it's nothing!
It seems that no matter how I try to explain it to them, they say stupid stuff like," Oh just take your medicine and you'll be fine in a couple months". or.. "You need to go get a job."
With 3rd stage cirrhosis, and labs that look like several months into tx with the low platlets, high clotting time, low rbc's...I am weak,exhausted and I can't do much of anything.. I feel like this before I have any of the drugs in me, so when I start, it will surely be much worse.....
I qualified for SSI in May, in less than 3 mo. on the FIRST try!! Anyone who has ever tried, knows it is not easy to get SSI.
I have always been the caretaker type, always doing for everyone else, never making any time for or demands for myself, but always making many DEMANDS ON myself, no matter what it took. and YES, THAT is MY fault! and now, when I really need some help, I can't seem to get any.
My meds are in the fridge, but I can't start yet,and frankly, I'm about ready to just F*^@*#*^ give up! Any ideas?
Oh, I think it very well may. There are certainly enough people in Hollywood with Hep C I'm sure. They just have to keep it quiet but once more people speak out and more people get denied care because they don't have cirrhosis YET, then my guess is there will be films made. With rationing of care we will soon have our own version of Dallas Buyer's Club. Maybe. Maybe not. :)
Media coverage is truly the answer. Get Hollywood involved and it will become better understood and better funded. Don't really know how that will ever happen.
My response to your concerns is -- Media Coverage
Hepatitis C does not get any decent coverage. Look at all the funding breast cancer receives and the awareness that has come about due to simple media coverage. Same with AIDS. Most people have not even heard of Hep C until recently and that's only because Sovaldi has been in the news so much. I think if more people knew more about Hep C, they would show more concern. A lot of it has to do with the herd. People need to get past the stigma and start organizing support and advocacy groups. imho
Hepatitis C does not get any decent coverage. Look at all the funding breast cancer receives and the awareness that has come about due to simple media coverage. Same with AIDS. Most people have not even heard of Hep C until recently and that's only because Sovaldi has been in the news so much. I think if more people knew more about Hep C, they would show more concern. A lot of it has to do with the herd. People need to get past the stigma and start organizing support and advocacy groups. imho
As I agree with most of what u r saying I'm not sure why the hostility...we r suppose to be supportive. It's hard enough to have friends and family not understand the full effects of this disease and Tx, but to have someone on the website be so aggressive is in my opinion not the best approach. Perhaps you are just having a bad day........giving the best info you can is fine but doing it with tact and kindness means everything bystander. Wishing you better health and a happy future
Deb
Deb
My husband just finshed Hep C tx, blood levels are good, waiting for ultrasound to see how far his 4th stage cirrohis has progressed since diagnosis about 9 months ago. Don't know what to expect, no one to talk to about it. Lost my brother to same thing 8 years ago. Trying to plan for a future, but so hard to know what to do and say. Don't know if his family knows the meaning of the diagnosis, not sure if I really do. Tired of feeling like everyone thinks it is my fault, seems like they put alcohol in my face so much like they think he quit drinking because of me, not because he will die. Medical bills piling up, he is working about 10-20 hours a week, how to plan for financial survival when this is over, how to live with hope
I had my family come to this forum and read and ask questions if they wanted. All but 1 reacted very well. 1 brother thought we were all a bunch of whiners, but then I didn't have him in my life for 20 years, don't need him now. Joni
the question is really difficult to answer
When I was diagnosed with type 2 diabetes some years back, the comments from family(some) were you don't have diabetes; you aren't on insulin and no amount of info could persuade them.
Now when I told them I had hep.C,Iwas apparantly looking for sympathy and wasn't sick
The family members you can't change but the one true thing is you will find out who your true friends are They will stick by you,and be concerned almost to the point of annoyance The others who won,t can,t or just don,t try to understand will peter out
You also will have to learn to say no to the requests on your time because frustation AKA ribarage rules with no predetermined time schedule I know this is real tough to do and I missed a lot of time with the grandkids cause of it.
Through it all tho' try to keep a little humour on your side and pray that they(the ones who lnow you aren't sick) never get infected cause for sure then the world would surely end
Have a truly good day and keep smiling .It'll drive them crazy Daryl
When I was diagnosed with type 2 diabetes some years back, the comments from family(some) were you don't have diabetes; you aren't on insulin and no amount of info could persuade them.
Now when I told them I had hep.C,Iwas apparantly looking for sympathy and wasn't sick
The family members you can't change but the one true thing is you will find out who your true friends are They will stick by you,and be concerned almost to the point of annoyance The others who won,t can,t or just don,t try to understand will peter out
You also will have to learn to say no to the requests on your time because frustation AKA ribarage rules with no predetermined time schedule I know this is real tough to do and I missed a lot of time with the grandkids cause of it.
Through it all tho' try to keep a little humour on your side and pray that they(the ones who lnow you aren't sick) never get infected cause for sure then the world would surely end
Have a truly good day and keep smiling .It'll drive them crazy Daryl
I'm so sory for your sad experiences with family and friends since dx, it's inconceivable to me that those close to you could act that way?? I hope you find comfort and support here and maybe your Drs office can recommend a local support group for you.
Some people understand, others dont. Thats just the way it is (thats what i found out). You can try educating people, the ones that arennt interested, leave them be.
I believe this disease is an eyeopener. Who your friends are, who they arent.
One thing I noticed you said. You said
"With 3rd stage cirrhosis"
)I have 3rd stage cirrhosis (stage c) so I look for others who mention that)
do you really have stage c cirrhosis? (cause stage c CANT do treatment, so I'm not understanding your post)
I'm thinking maybe you have 3rd stage HEPATITIS. (BIG DIFFERENCE)(very big difference.
I believe this disease is an eyeopener. Who your friends are, who they arent.
One thing I noticed you said. You said
"With 3rd stage cirrhosis"
)I have 3rd stage cirrhosis (stage c) so I look for others who mention that)
do you really have stage c cirrhosis? (cause stage c CANT do treatment, so I'm not understanding your post)
I'm thinking maybe you have 3rd stage HEPATITIS. (BIG DIFFERENCE)(very big difference.
ps- if you do have stage c, hang in there (and I hope you get your transplant soon) Take it one day at a time. don't let others stress you out.
What is 3rd stage cirrhosis (stage c). I thought you either have cirrhosis or you don't. How is it graded or staged and how many stages are there and what is the difference?
Yes, I know that people are uneducated when it comes to HEP C
The knowledge is out there......
My brother asked me when i first told him i had Hep C, "can I catch it"....and then last week we were talking on the phone and he asked me, is it heredity.......i got so pissed, i have been talking about this since Oct 2003, and more so since starting tx Dec 29.......and its still about him.........he is not interested cause it doesnt pretain to him......others are this way too........Just think about yourself, try to explain and if they care they will read all your info and educate themselves......IF NOT........think about yourself and with a positive attitude we/YOU will get through your treatment.....
Anyway, i believe there is no way you can really explain how you feel being diagnoised with Hep C or how you feel on tx.....its sort of like explaining to someone after you have delievered your first born.....and discribing what you felt.....its easily forgotten anyway after the baby is born......
the word Fatique is hard to explain..........and this is major during tx.........i wish you the very best .....Deb
The knowledge is out there......
My brother asked me when i first told him i had Hep C, "can I catch it"....and then last week we were talking on the phone and he asked me, is it heredity.......i got so pissed, i have been talking about this since Oct 2003, and more so since starting tx Dec 29.......and its still about him.........he is not interested cause it doesnt pretain to him......others are this way too........Just think about yourself, try to explain and if they care they will read all your info and educate themselves......IF NOT........think about yourself and with a positive attitude we/YOU will get through your treatment.....
Anyway, i believe there is no way you can really explain how you feel being diagnoised with Hep C or how you feel on tx.....its sort of like explaining to someone after you have delievered your first born.....and discribing what you felt.....its easily forgotten anyway after the baby is born......
the word Fatique is hard to explain..........and this is major during tx.........i wish you the very best .....Deb
I have to comment on both of your comments. Obviously you have been misinformed. I had complete liver failure in 2002. My biopsy showed stage 3 cirrhosis and I was diagnosed with ESLD (end stage liver disease) I was told by my 1st G.I. that I couldn't be treated and accepted his word. Then I found this forum and Mikesimon suggested I get a 2nd opinion. I did, and finished tx. the 7th of May. At 3 months post, still undetectable. I was 2b, with beggining viral load of 5 million. Joni
I just wanted to add that I don't " Qualify " for transplant anymore because my liver health has improved through liver freindly diet, and tx. reversed inflamation and my liver is back to normal size.
I just want to throttle these people for you. New-sojourn's suggestions are solid, and I can't think of anything calm or useful to add. Right now I'm just flooded with anger. Are they EVER going to get it, or with whatever scant energy you have left to you are you going to have to call new people into your life?
Cursed geography! Why do you live so far away?
Cursed geography! Why do you live so far away?
You asked "How do we make others understand?" The real answer is YOU DON'T. Unless someone has lived with it or thru it, they will NEVER get it.
Sorry, but this question strikes a nerve with me and my husband. He has gone as far as offering people a couple of his shots to help them understand. I am quoting him "Let me stick your ass a couple of times with the ****, then you will know."
Back in the spring, ( hubby started this round of tx in early feb.) we has a pretty bad storm and lost several branches and a couple of tops out of some trees. I can pick up branches but a 40 foot tree top is a bit large for me to carry. Well, it obviously needs to be sawed up with a chain saw. That, I am unwilling to try. I don't want to hurt me. HA HA.
My husbands mother lives in a different state but we talk to her every weekend. A couple of weeks ago (I am still fuming from it) she ask about the tree top clean up. Has he done it yet? I tell her "no he hasn't" and she say to me "Well, why not?" Well, DUUUUHHHH, BECAUSE HE IS SICK! She says to me, "Why doesn't he just cut a couple of limbs off per night if it is to much to do all at once?" Made me want to scream. She and I have had that conversation more than once.
The damn tree tops aren't going anywhere and they are laying on our land, they will keep. If someone doesn't like it, they can clean them up themselves or don't look at them.
Don't get me wrong, my mother-in-law is a saint and probably has 50 stars for her halo when she gets to heaven, but she just doesn't get it.
It drives me nuts with people attitudes and lack of knowledge about what these meds do to people.
My husbands boss said to him one day, "If someone pisses you off, you just go home." He told his boss, "I could stay and through computer moniters around the office if you prefer." His boss tells him that won't be necessary. So see, there are ways to explain these meds to people to make them understand.
Sorry for rambling on but these meds make me crazy too and I am not even taking them.
Sorry, but this question strikes a nerve with me and my husband. He has gone as far as offering people a couple of his shots to help them understand. I am quoting him "Let me stick your ass a couple of times with the ****, then you will know."
Back in the spring, ( hubby started this round of tx in early feb.) we has a pretty bad storm and lost several branches and a couple of tops out of some trees. I can pick up branches but a 40 foot tree top is a bit large for me to carry. Well, it obviously needs to be sawed up with a chain saw. That, I am unwilling to try. I don't want to hurt me. HA HA.
My husbands mother lives in a different state but we talk to her every weekend. A couple of weeks ago (I am still fuming from it) she ask about the tree top clean up. Has he done it yet? I tell her "no he hasn't" and she say to me "Well, why not?" Well, DUUUUHHHH, BECAUSE HE IS SICK! She says to me, "Why doesn't he just cut a couple of limbs off per night if it is to much to do all at once?" Made me want to scream. She and I have had that conversation more than once.
The damn tree tops aren't going anywhere and they are laying on our land, they will keep. If someone doesn't like it, they can clean them up themselves or don't look at them.
Don't get me wrong, my mother-in-law is a saint and probably has 50 stars for her halo when she gets to heaven, but she just doesn't get it.
It drives me nuts with people attitudes and lack of knowledge about what these meds do to people.
My husbands boss said to him one day, "If someone pisses you off, you just go home." He told his boss, "I could stay and through computer moniters around the office if you prefer." His boss tells him that won't be necessary. So see, there are ways to explain these meds to people to make them understand.
Sorry for rambling on but these meds make me crazy too and I am not even taking them.
I thought you were a drinker that went into acute liver failure.
(seperate deal there sweetheart)
glad you quit drinking (smart), glad your liver recovered (great news)
anytime you want to explain how its legal to give tx to someone with a ctp of 10 or higher
(or if you have any actual link to show that)---------PLEASE post it
(seperate deal there sweetheart)
glad you quit drinking (smart), glad your liver recovered (great news)
anytime you want to explain how its legal to give tx to someone with a ctp of 10 or higher
(or if you have any actual link to show that)---------PLEASE post it
while your at it-------- please post where you got your ideas on spreading hcv by sharing a HAIRBRUSH.
educate us all---------- please.
LOL!
educate us all---------- please.
LOL!
I guess everyone here knows this, but just in case--
HEP stages are shown by BIOPSY
CIRR stages are shown by CTP score
(as per jonis comment that her "biopsy" showed stage 3 cirrhosis)... not done that way.
(Glad you found a better doctor and your health did improve. Your first doctor was truly uninformed)
HEP stages are shown by BIOPSY
CIRR stages are shown by CTP score
(as per jonis comment that her "biopsy" showed stage 3 cirrhosis)... not done that way.
(Glad you found a better doctor and your health did improve. Your first doctor was truly uninformed)
Wow! This thread brought tears to my eyes ! When my husband was Dx last year I made it my personal mission to find out everything I could, as I still do. I have changed so many things about our lives so that when his treatment begins in a few weeks life will be easier for him.I have talked to EVERYONE I could that will be effected. I am so very sorry that some of you are treated like you described! LAZY !!! Wow I am so sorry!
The one little secret I have not shared with you is I have never been tested, I was scheduled twice and canceled because I am afraid to know the answer. I know my chances are slim but I have shared his razor and when we were younger we had some marathon sex {he's too old now lol} that could have resulted in well you know what I mean! I just can't imagine couples like Honey and Mr Honey both treating at the same time. I have a little girl.
Silvermoon, I didn't know things were that bad for you. If there is anything I can help you with , you have my number please use it!
While I'm running at the mouth here, my husband wouldn't even be treating if it weren't for you guys especially Mike, Indy, Rev,TnHep. Kenneage. If I haven't thanked you properly Thanks. And thanks for putting up with my **** when I was so angry about it all.
Wow.....that would be my longest post.....
Oh and Indy showed his ass on the other sight take a peek!
The one little secret I have not shared with you is I have never been tested, I was scheduled twice and canceled because I am afraid to know the answer. I know my chances are slim but I have shared his razor and when we were younger we had some marathon sex {he's too old now lol} that could have resulted in well you know what I mean! I just can't imagine couples like Honey and Mr Honey both treating at the same time. I have a little girl.
Silvermoon, I didn't know things were that bad for you. If there is anything I can help you with , you have my number please use it!
While I'm running at the mouth here, my husband wouldn't even be treating if it weren't for you guys especially Mike, Indy, Rev,TnHep. Kenneage. If I haven't thanked you properly Thanks. And thanks for putting up with my **** when I was so angry about it all.
Wow.....that would be my longest post.....
Oh and Indy showed his ass on the other sight take a peek!
Sorry to hear that they just don't get it!! Hey,,,you tried and now you know,,,You can depend on YOU from now on. If they don't want to hear about the disease or your bad days and they call,,,just tell them I'm busy! They will figure it out real quick. Get your stuff in order to get ready to go...You can do this Carol,,,You have us!!
Hey there! I know you are scared but yes,,,You do need to face this soon. People do this all the time and are negative,,,like less then 2% and if you are in that 2%,,,,you will start after Billy is on his way and doing good. I think you have nothing to worry but the test and just being done with it!
Good morning everyone - pacific standard time for me. Silvermoon; you mentioned that you're a caretaker, I relate to that. I haven't started tx yet but I imagine I'll get the same response as you. Caretakes are view as strong, resilient and low maintainence. Last October I tripped on a stair and broke my left foot, I live in a 5 level townhouse (29 stairs), my extremely lazy kids - then ages 17 & 21 viewed it as an inconvenience. At work they were sensitive for the first few days, everything was a struggle for me, part of the problem is I'm not used to letting other people help me it's very uncomfortable for me, but in this situation I would have welcomed it.
I have a caretake friend who had breast cancer, during her tx her husband acted like a pissy brat because she couldn't function at the high level he had grow accustom to, her own mother refused to believe she was sick.
Anyway, I don't really have any advice, it would be nice if people "got it" and were able to assist you, it's tough, I'll bet you've been there for them when they needed it.
I have a caretake friend who had breast cancer, during her tx her husband acted like a pissy brat because she couldn't function at the high level he had grow accustom to, her own mother refused to believe she was sick.
Anyway, I don't really have any advice, it would be nice if people "got it" and were able to assist you, it's tough, I'll bet you've been there for them when they needed it.
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