How do we make others understand? and OPEN Thread

[silvermoon]

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?

[derail]

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

[Amerabrit]

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.

[tina-b]

That is a fact.

[bystander2002]

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.

[bystander2002]

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.

[tina-b]

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?