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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. . . .
A repost from HCC Our Sponsors Christmas 2003 Issue
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