Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
I went to my sisters ystrdy while she was out my brother in law sat next to me and with a very serious face said the following, you know Lucy you need to be more positive okay your sick and like you say theres no cure as of yet but you should be doing more for yourself not just staying home, crying about it... you say you have bathroom issues but hey thats why they make adult diapers.. and you know I see people out there without legs, or hands and they are still out there working, vacationing ,etc etc etc...
I could not even respond I just wanted to yell U just don't get it, yes they might be missing limbs some might even be without eye sight but they most probably feel healthy, me its not just knowing I have cirrhosis/hep c its the constant daily weakness, the joint pains, the dizziness, the cramps in my legs, the forgetfulness the worrying about going to a family function and having to leave early because i tire easily... what can I say, it takes up all my energy to care for my 3 elderly dogs who one is diabetic, one can not walk on her own and the other has arthritis in bwn cooking and cleaning I cant do any more... but they do not understand they think I am weak and not a fighter but I've been fighting this dreadful illness for aprox 6 yrs and sometimes I just want a way out.. but I soldier on.... hmmf what do they know....:( or maybe I am a whimp what would they do if the shoe were on the other foot I want to be able to tell them explain to them so that they'd understand what exactly it is but I don't think they get it...
I could not even respond I just wanted to yell U just don't get it, yes they might be missing limbs some might even be without eye sight but they most probably feel healthy, me its not just knowing I have cirrhosis/hep c its the constant daily weakness, the joint pains, the dizziness, the cramps in my legs, the forgetfulness the worrying about going to a family function and having to leave early because i tire easily... what can I say, it takes up all my energy to care for my 3 elderly dogs who one is diabetic, one can not walk on her own and the other has arthritis in bwn cooking and cleaning I cant do any more... but they do not understand they think I am weak and not a fighter but I've been fighting this dreadful illness for aprox 6 yrs and sometimes I just want a way out.. but I soldier on.... hmmf what do they know....:( or maybe I am a whimp what would they do if the shoe were on the other foot I want to be able to tell them explain to them so that they'd understand what exactly it is but I don't think they get it...
You know what is best for you and what you can handle. Your support is here, on DS or other forums of people with the virus. If you can assume that your families suggestions come from a place of love, not criticism, it might make them easier to bear....
I'll give you an example of what I'm trying to say here...
My older brother for many years could not understand my illness mainly because of his own self-imposed ignorance...
It wasn't until he became gravely ill himself that he finally admitted to me and our Mother just how ignorant he was for all those years of ridiculing both my Mother and myself when I was under her care during the early years of my illness...
He then proceeded to profusely and very emotionally apologize to us for everything he had said and done to both of us (He ridiculed his own Mother for taking care of her sick son!)...
To this day, he's still apologetic to me and my mother and has recently experienced a clue as to how much pain I go through on a daily basis after he got a hip replacement... I did NOT wish for him to experience that in order for his understanding of my own daily pain...
Now I'm not saying that eventually this may happen to you also because realistically, chances are very slim @ best if it ever does, so don't lose any sleep over waiting for something similar to happen with your family IMHO...
My Father couldn't understand what I was going through also during the beginning of my ongoing war with HCV until sadly, he started to become terminally ill himself and it wasn't until I received my own "Gift of Life" that he fought valiantly to hang on long enough to know that I did get another chance to live some more, and he passed away shortly after I received my liver transplant when I was a little over a year year post transplant!
At the very least, there is a sense of comfort that he did finally give in to the cancer that was eating him alive from within once he realized that his son would be safe and live to continue his legacy and that was the only thing that mattered to him during his final days...
Unfortunately I wasn't close enough to be with my Dad on the day he finally passed because I was living in Pittsburgh during that time and he resided in New Jersey in Elizabeth so I had to drive non-stop to get to my father's house to go over his final wishes since he named me as his executor of his will and coordinator of his funeral as well as his preference to be cremated shortly thereafter and his ashes to be spread out to his favorite beach back in his native Island of Cuba...
I couldn't perform that part of his final wishes because I still not allowed to travel , but my little sister could, so he did it instead and she managed to smuggle in a considerable amount of Cigaros Cubano Naturalesa which was converted to a generous profit for my family!!! d;>)~
There were many days and nights when my Father would call me before he passed, expressing his regret at being so ignorant to my own suffering from HCV and it's manifestations that I had to stop him one day because he was becoming obsessed with trying to make up to me for all those years by constantly apologizing to the point where it was starting to annoy me!
So I intended to make him less guilty by explaining to him that I didn't continue to have any sort of resentment towards him for being the way he was with me initially when I first got sick...
It only made him feel worse about himself so in desperation, I threatened him that I would no longer answer his call if all he wanted to do was to continuously apologize and show so much remorse that was at times suffocating to say the least!!!
That worked and I'm grateful that he respected my wish to the day he passed away... Man do I still miss him! "Hard to breathe right about now!"
I guess my point is that I can truly relate to what you're going through on a personal level with respect to your own family so, you're not alone by feeling blue about how they react to your illness.
And don't get me wrong by thinking that what happened to me later during my experiences of tolerating this virus and the many manifestations of illnesses that develop from it's progression inside of me with my family, will eventually happen to you because you would be misled if you did! I just wanted to share some of my own experiences with you when I went through similar conditions with them... However, I do hope that things will start to improve for you soon enough!!!
Respectfully,
HANK
Pretty much what I have experienced is a lot of denial, and people who think it is just going to clear up once I get a better doctor. They think I am probably just exaggerating the problem and there is some new treatment out there that I have not found out about yet. That is what they tell me, " you don't know this can't be cured, there are so many new advances and treatments now. Just find a better doctor and they probably have something that will work."
And that is wearing me out, because I am so so tired and some days I feel so awful but I just have to act like I am doing fine and can handle working and cooking and cleaning and shopping because they do not want to hear anything different.
It is funny that there are a few people who I was not really close with who seem to understand and offer me the kindest words of support. They always ask me how I am doing in a sincere way, and I can tell they care. That doesn't mean that others don't care, it is just that some people can't handle being around someone who is sick and some are naturally able to show compassion and respect what other people are going through.
There was a time in my life when I never would have let anyone see me cry. Now I might burst into tears at any moment and I can't help that. That is not me feeling sorry for myself or feeling like I have it worse than anyone else, I just get sad and tired and feel emotional. I would say that is pretty normal considering everything that is going on with my body. And I don't need someone to tell me how to feel or how to fix it because they can't. A simple "I'm sorry you feel bad, is there anything I can do for you?" would be nice. You don't need to understand what it is like to have cirrhosis and HCV to offer a little support like that.
We could treat a lots of people here in the US for that kind of money, but you are considered to be a junkie so no one cares. When someone hears it you got HCV the first thing on their mind what kind of drugs he/she did. Unfortunately how someone could had the infection from a nail saloon is never even enters the mind.
And the who should test first line always, : IF YOU DID INTRAVENOUS DRUGS , AND IF YOU HAD BLOOD TRANSFUSION PRIOR TO ....
What do we really expect? We can even ask the government to rewrite the books? As sufferers we cant even join forces as has all this disagreements between each others. The books got to be re written from the ground up. The stigma how we got this disease got to come to a different conclusion, than we may get a representation on higher places. No one will fight for a junkie in the congress. Unfortunately this is what happening today.
Before we expecting an outside support , we have to think for better support for the cause on the inside.
Maybe I'd thank him for sharing his ~opinion~ with me, & expressing his concern. Perhaps bring him a bunch of pamphlets about hcv?
Attitudes like his keep us isolated & ashamed. You do what you need to for your own health.