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family issues

WHEN FAMILY MEMBERS JUST CAN'T UNDERSTAND

       There are probably few things in life that are more hurtful
than being rejected by family members when we need them most.
Unfortunately, many patients find that a diagnosis of hepatitis C
not only causes friends to scatter, but also contributes to some
families literally splitting apart. Hep C is a disease that no one
truly understands, nor do we have much control over what it does to
us. Sure, we can learn to live with it and alleviate some of its
symptoms, but we still have no control over how others see us or how
they'll act towards us. Hepatitis C is a disease with so much
misleading information that it leaves us wide open to criticism from
family members who either can't or won't try to understand. Because
we "don't look sick" it's easy for them to forget that we are. Pain
and discomfort aren't always obvious on the surface, but this sure
doesn't mean that they aren't real.

       Progressed hepatitis C causes changes in temperament and
studies have shown that it does have a negative effect on thought
processes and behavior. It's not unusual to be a bit anti-social
when a person isn't feeling well, but with healthy folks, it's
usually temporary and most people are understanding With those of
us who have hepatitis C and are symptomatic though, it's an ongoing
struggle, and one that can easily mimic just about every negative
personality trait that a person could ever have. Since the liver
plays such an important role in energy production, it can make a
person appear lazy since we tire easily and often require breaks to
rest. This fatigue can then contribute to irritability and short-
temperedness which doesn't exactly endear us to family members or
anyone else. These negative traits are often blown out of proportion
in the minds of loved ones and it's not uncommon for them to think
we're making excuses for our behavior because we don't appear sick
outwardly. Many of us find ourselves written off by our families
as "being hard to get along with" or "difficult" regardless of how
hard we may try to show them otherwise. Don't be surprised if you
find yourself excluded from family activities either. It's
unfortunate, but it happens all the time and families can find ways
to justify this sort of thing by blaming it on those of us who are
sick.

       It's no secret that hep C definitely contributes to this
sort of problem in many infected individuals, and most of us are
very aware that we're not always the easiest folks to get along with
when we're feeling poorly. It all boils down to lack of knowledge
about the disease, but we can't make others learn about something
that they don't want to, so we have to try to find other ways to
either co-exist or separate ourselves from it all. Health is far too
important to allow family problems to destroy and toxic people are
detrimental to those who are sick. Outward appearances often belie
what's truly going on inside of us and no one can know how we feel
just by looking at us. Only another patient or their caretaker can
know how much most of us struggle every day of our lives to be
likeable, amicable, and as normal as this dreadful disease will
allow us to be. We need the love of our families more than almost
anything else in this world, but most of them never realize how
tempting it is to want to give up the fight for life and let nature
just take it's course when we realize that we don't have their
support.

       Some family members harbor resentment towards those of us
with hepatitis C because they feel that somehow we did something to
deserve it. Of course this is absurd because there is no test
available to determine the source of a person's infection, and it's
wrong to hold such a grudge anyway. Irregardless, it's terribly
hurtful to know that those who are "supposed" to love us would hold
these kinds of feelings towards their own flesh and blood.
Nevertheless, some will accuse us of using our illness to garner
sympathy or to excuse our shortcomings and it's something we have to
get used to.

       Many patients we speak to express the fact that they've come
to dread holidays because of knowing that somehow, some way, their
illness will affect what should be a happy and joyous time. It's not
unusual for patients to want to isolate themselves from loved ones
because they feel like "lepers" because of their illness. A display
of unconditional love from family members could go a long way in
alleviating these feelings, but, our loved ones are human too and we
can't expect them to see things quite like we do. After all, if you
never suffered with a potentially fatal disease, how could you know
how it feels?

       In spite of how things might appear, we're not making
excuses here folks. These things are very real, and we're not making
anything up just to convince our families or anyone else that we're
worthy of their love. Being resented is a very difficult sentiment
to swallow though, and especially when it comes from our families.

       None of us asked to be infected with hepatitis C, and I know
of no one who has the disease who hasn't felt at one time or another
that they've let their families down by getting sick. However this
doesn't give anyone license to belittle us or make us feel inferior
because of it. We know when we're feeling less than sociable and we
need desperately for our loved ones to understand and not make more
of an issue out of it than it already is. No one really enjoys being
around people who are feeling poorly and we're well aware of this
too. What we don't need though, is to be constantly reminded that
our disease sometimes causes us to be less than cordial, because
it's something we struggle with constantly.

       There are many stages of this disease and degrees of
severity, so just because one person with hep C may not have
symptoms doesn't mean that another patient doesn't. Hepatitis C is a
very complex disease with many different strains, and no two people
experience exactly the same thing. We need our families to know that
we hate this disease and what it does to us more than anyone else
ever could. We're also very cognizant of the fact that it affects
not only us, but everyone around us. For this we can only apologize
and try our best to be as pleasant as possible when we're around.

       I sincerely hope that those reading this who are healthy
will forgive us when we're "less than" we'd like to be. We're aware,
we're fighting for our lives, and we're doing the very best that we
can. Now if we could only make our loved ones understand. . . .

31 Responses
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Avatar universal
In all fairness, my wife has been where I think Sherr has been. I lied and cheated and drugged my way to hep-C. My wife is severely scarred from all that behavior. Lets not call her names but understand the other side of the coin. Seems like she posts and reads so I assume her husband is really in great hands with this woman. I watch this forum everyday. Geno type 1-b, no treatment. I am waiting for alternative and my wife supports me but she gets her digs in every now and then. In my case and looks like Sher's I brought this on in my denial way of thinking. I'm not saying you are right Sher but I do understand. I pray for you as well as your husband and all of us. I agree you need alanon to understand all this addiction lingo. But God bless you and keep coming back and YOU try and understand our side of this coin, called the dragon.
Helpful - 0
Avatar universal
Hepcbilly, wow, it sounds like you have come a long mind healthy way. I imagine dealing with an addict that you love must be impossibly hard. When you say your wife is permanently scared from the experience of dealing with your addiction disease, in what way do you mean? Hope I
Helpful - 0
Avatar universal
Not at all Terriri, in a word without going too far off this forum TRUST. In my addiction I lied and lied and then I lied some more. How can husbands/wives of us addicts TRUST. And that my dear can damage an innocent loved one and is why I think I feel for Sherr, she to is a victum. I think we addicts know what we may have done to those we love and is why I think I understand Sherrs anger. Without great detail on addiction, it is a family disease, we know all that. But Hepc is not about addiction, so I am done.I see her way of thinking{as my wife points out sometimes} I personaly have this disease from addiction. God Bless {especially you insomniacs}.
Helpful - 0
Avatar universal
Oh No befuddledbedarned I just choose not to do treatment right now. My GI will treat me, but this is my choice, for right now. Don't listen to me watch the forum I just had a comment about another post. These guys know what they are talking about.
Helpful - 0
30678 tn?1217989247
I guess Im just lucky to have the support I have had since dx with Hep c 1a. Im a paramedic and got it on the job, but do like my beer on my days off, Im on wk 40 of 48, I just finished reading about the spouses and such that continue the lifestyle (drugs, tatoos, they had before. I havent had a drink since last year when dx, sure its rough but when I think of the sacrifices my wife (very little sex, my brain fog, and a little riba-rage thrown in) has made for me, soft drinks arnt so bad. This disease is blood to blood and alcohol durring tx is stupid, I know when Im finished with tx Im having oysters, crawfish, crabs and a beer, I have no liver damage but if I did forget the beer.I will still work on an ambulance and take my chances but thats my job. If a relationship doesnt meet halfway its time to rethink it and take care of yourself. Life is short enough to put up with ****. I sometimes wonder about the percentage stats for svr when I know what the stats are for drug abusers. And I mean that in a good way, sure there are non responders and those that found out late they were infected (after symptoms) but most in this forum are commited to slaying the dragon and each other and read it daily. We were all kids once doing things we were ignorant of the dangers of. Its time for some to grow up. If the dragon isnt a wake up call, what the heck is. Good Nite all
Helpful - 0
Avatar universal
hi there, i have to agree with galen, there is wonderful suport available in a similar format to this one for you....just type in Al-Anon...and choose which sites you want....I think you will find suport for what you are going through there......however.....and i will say this anyway....cause i CAN and also the menopausal, riba rage stuff working in my favor right about now.....i know a think a or two about addiction and have written a book on the subject AND it was used as a required text for several university courses for which i lectured.....NOW...having asstablished my working base of knowledge somewhat...i will say to you that addicts are doing the very best they can to cope with their own often emmense agony.....more often than not, i have found, (even speaking from deeply personal experience) that the majority of those who cope with their pain via drugs and alcolhol, do so as a result of very early, and not so early abuse....often sexual, if not, physical and phycological....so...having said that, i understand a little of your frustration, however, my dear, it pales in comparrisson to the life of pain, confusion and after effects that these experiences mark for life one with....so, i would encourage one of 2 things...either understand WHY he finds his fear based using....nessisary and love and suport him through it...(it tends to be far more difficult for men to speak and open up about this)or.....contact al-anon for suport...or leave....the LAST thing any addict or alcoholic needs is MORE SHAME DUMPED ON THEM......wishing you find the help and guidance you seek elsewhere....it's out there for you.
Helpful - 0

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