Aa
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. . . .
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. . . .
Cuteus:
He actually was negative for the hcv antibodies; he didn't test for hcv rna. I realize that I did not contract hepatitis c from him, but I have to admit at first I did suspect that was how I got it. Like many, I was not educated about hepatitis c, and did not realize that sexual transmission was so low. After researching, I realized my blood transfusion as an infant carried a much greater risk of infection then sexual transmission. It took a bit for it to sink in that something that happened so long ago could be affecting me now; it was very surreal. Problem is, however, often times alcoholics/addicts will lie, so although I knew about the alcohol and cocaine, I always wondered if there were other things I was not aware of; not a pleasant way to live. Because of this tendency of addicts to lie, I was terrified to be tested for HIV; I was tested twice (well after 6 months of last possible exposure) and thankfully they were negative. (I don't think he did IV drugs, but then again, I couldn't be %100 sure.) My ex-boyfriend and I are still in contact; I have encouraged him to be tested again just to be sure. (My daughter had a false-negative test so I am a bit overly cautious.) He said he recently gave blood for a fund raiser and was not notified of any infections; he said he disclosed the fact he was exposed to hep c (by me) to the blood drawing center. I found that odd because, if he was honest with them, I would think the cocaine use would have eliminated him as a donor, but I am not sure about that because, thankfully (given I had hep c all my life without knowing), I have never donated blood. I am also still friends with my ex-husband whom I was with for 7 years, as well as all of my long-term ex-boyfriends; I have told them all about my hep C status; they have all been tested, and they are all negative. Although far from a scientific study, I think this supports the theory of low sexual transmission.
He actually was negative for the hcv antibodies; he didn't test for hcv rna. I realize that I did not contract hepatitis c from him, but I have to admit at first I did suspect that was how I got it. Like many, I was not educated about hepatitis c, and did not realize that sexual transmission was so low. After researching, I realized my blood transfusion as an infant carried a much greater risk of infection then sexual transmission. It took a bit for it to sink in that something that happened so long ago could be affecting me now; it was very surreal. Problem is, however, often times alcoholics/addicts will lie, so although I knew about the alcohol and cocaine, I always wondered if there were other things I was not aware of; not a pleasant way to live. Because of this tendency of addicts to lie, I was terrified to be tested for HIV; I was tested twice (well after 6 months of last possible exposure) and thankfully they were negative. (I don't think he did IV drugs, but then again, I couldn't be %100 sure.) My ex-boyfriend and I are still in contact; I have encouraged him to be tested again just to be sure. (My daughter had a false-negative test so I am a bit overly cautious.) He said he recently gave blood for a fund raiser and was not notified of any infections; he said he disclosed the fact he was exposed to hep c (by me) to the blood drawing center. I found that odd because, if he was honest with them, I would think the cocaine use would have eliminated him as a donor, but I am not sure about that because, thankfully (given I had hep c all my life without knowing), I have never donated blood. I am also still friends with my ex-husband whom I was with for 7 years, as well as all of my long-term ex-boyfriends; I have told them all about my hep C status; they have all been tested, and they are all negative. Although far from a scientific study, I think this supports the theory of low sexual transmission.
I must have missed something in your post. Was your boyfriend negative for the hcv rna or antibodies? If he is negative, you and your daughter could not have been infected by him. If he was exposed to hcv, he will always carry the antibodies or so I read. Just a little confused.
I gave up all my idiot behavior, so my feathers aren't ruffled by your post, but I can't help wondering why you married a junkie if you don't like the roller coaster ride?
Hi:
I understand the anger you feel towards your husband; but the anger you are feeling will only tear you up. My ex-boyfriend of 6 years had problems drinking and with cocaine. Ironically I and my daughter are the ones with the hepatitis C; he tested negative. When I found out my daughter and I had hepatitis, I broke up with him. I realized life is too short to waste on someone who is in denial, and I knew I needed all my energy to take care of myself and my daughter. I looked into the future, saw the possibility of having to begin combo therapy, and could easily imagine being sick from medication one evening, relying on him to be there for something, and him binging on that night. I would rather be alone than be with someone I can't depend on to be there when I need them. You need to separate your husbands hepatitis c from his addictive behaviors. While one may have lead to the other, they are now two different issues that must be addressed separately. While you COULD help him with his hepatitis C, you certainly CANNOT help him if he is in denial of his addictions.
Maybe you should consider separating from him for a while and taking care of yourself. Perhaps the time apart will give him a chance to make some realizations of his own. You cannot help someone unless you first help yourself. Ask yourself honestly why you want to stay in a relationship that brings you so much pain. Do not confuse need with love. You can still love someone even if you are not with them; you need to learn to love yourself a little more. I know the situation you are in is very difficult; it hurts a great deal. I can feel the pain you are in under the anger, but you don't have to live like this. I was about to type "good luck," but you don't need luck in this situation. You have a choice; it is your life. Make the choice to be happy.
G
I understand the anger you feel towards your husband; but the anger you are feeling will only tear you up. My ex-boyfriend of 6 years had problems drinking and with cocaine. Ironically I and my daughter are the ones with the hepatitis C; he tested negative. When I found out my daughter and I had hepatitis, I broke up with him. I realized life is too short to waste on someone who is in denial, and I knew I needed all my energy to take care of myself and my daughter. I looked into the future, saw the possibility of having to begin combo therapy, and could easily imagine being sick from medication one evening, relying on him to be there for something, and him binging on that night. I would rather be alone than be with someone I can't depend on to be there when I need them. You need to separate your husbands hepatitis c from his addictive behaviors. While one may have lead to the other, they are now two different issues that must be addressed separately. While you COULD help him with his hepatitis C, you certainly CANNOT help him if he is in denial of his addictions.
Maybe you should consider separating from him for a while and taking care of yourself. Perhaps the time apart will give him a chance to make some realizations of his own. You cannot help someone unless you first help yourself. Ask yourself honestly why you want to stay in a relationship that brings you so much pain. Do not confuse need with love. You can still love someone even if you are not with them; you need to learn to love yourself a little more. I know the situation you are in is very difficult; it hurts a great deal. I can feel the pain you are in under the anger, but you don't have to live like this. I was about to type "good luck," but you don't need luck in this situation. You have a choice; it is your life. Make the choice to be happy.
G
While I can appreciate your position, this is not a support forum for those who have to deal with addicts. It is for those of us with hepatitis to find support, comfort, and a place to vent our pain and frustrations. Please try Al-Anon. They may be able to help you. I think a lot of your anger is self-directed and out of place here.
unfortunately this is when we find out who our friends are. almost done 2: thank u for acknowledging my message.
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