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. . . .
I'm from Romania
...but living in New Zealand
i did not write the things on family above (at the top) but it came thru on one of the hep sites and i thought it was worth sharing. dont know who wrote it. as family issues can definitely emerge with this illness and the treatment.
fortunately i have a supportive family but at times things can be difficult. hey life is difficult - then u die. ha i pray a lot. and give thanks... love to all....
fortunately i have a supportive family but at times things can be difficult. hey life is difficult - then u die. ha i pray a lot. and give thanks... love to all....
Hi again:
Just want to add, the reason we broke up was not that I suspected I got hepatitis c from him. The reason was that he was still in denial about his addictions, and I did not want to live with that anymore, especially since I had my and my daughter's health to worry about. Last year we were in Hawaii and went diving. The next day (Thursday) I was getting strange joint pain and was concerned I had decompression illness. I skipped a morning dive on the subsequent day (Friday) because I was worried. All morning and afternoon on Friday I was concerned about having decompression illness and couldn't wait for my boyfriend to get back from his morning dive. He returned 5 hours late from the dive drunk; he knew not drinking was a condition of our relationship, and not only did he drink, but he was drinking and driving. I was annoyed with him, told him I wasn't feeling well, and went to the hospital. The doctor wanted to send me to a decompression chamber; the symptoms of decompression illness can be vague, and the doctor didn't want to take any chances. I called my boyfriend to tell him what was happening, and he told me he was leaving me; he thought I was being dramatic about not feeling well and used that as an excuse for his behavior. He said he was leaving my plane tickets and some money and checking into another hotel. I left the hospital and ran to the hotel where we were staying to stop him from leaving. I let his drinking and drunken decision making come before concerns for my own health. It was like a nightmare for me. Of course he changed his mind the next day when he sobered up, but that was next to the last straw for me. I didn't go to the decompression chamber because Diver's Alert Network said they didn't think it was decompression illness; in retrospect I believe what I was feeling were symptoms of hepatitis c. For most of my life I have been told these vague, strange symptoms were all in my head. It was episodes like what happened in Hawaii that concern me. Whether you have hepatitis c or not, everyone deserves to be with someone who will be there for them when needed. I now know I was really sick (hep c), I just didn't know what was wrong, and it saddens me he wasn't there for me when I needed him. It saddens me even more I wasn't there for myself, as I suspect _Sherr may not be there for herself (completely speculative); I will not put myself in that position again. Had I did get hepatitis c from him, and he was not in denial, sober, and trying his best, I never would have left him; I would have stayed and we would have fought it together. But that was/is not the situation.
Just want to add, the reason we broke up was not that I suspected I got hepatitis c from him. The reason was that he was still in denial about his addictions, and I did not want to live with that anymore, especially since I had my and my daughter's health to worry about. Last year we were in Hawaii and went diving. The next day (Thursday) I was getting strange joint pain and was concerned I had decompression illness. I skipped a morning dive on the subsequent day (Friday) because I was worried. All morning and afternoon on Friday I was concerned about having decompression illness and couldn't wait for my boyfriend to get back from his morning dive. He returned 5 hours late from the dive drunk; he knew not drinking was a condition of our relationship, and not only did he drink, but he was drinking and driving. I was annoyed with him, told him I wasn't feeling well, and went to the hospital. The doctor wanted to send me to a decompression chamber; the symptoms of decompression illness can be vague, and the doctor didn't want to take any chances. I called my boyfriend to tell him what was happening, and he told me he was leaving me; he thought I was being dramatic about not feeling well and used that as an excuse for his behavior. He said he was leaving my plane tickets and some money and checking into another hotel. I left the hospital and ran to the hotel where we were staying to stop him from leaving. I let his drinking and drunken decision making come before concerns for my own health. It was like a nightmare for me. Of course he changed his mind the next day when he sobered up, but that was next to the last straw for me. I didn't go to the decompression chamber because Diver's Alert Network said they didn't think it was decompression illness; in retrospect I believe what I was feeling were symptoms of hepatitis c. For most of my life I have been told these vague, strange symptoms were all in my head. It was episodes like what happened in Hawaii that concern me. Whether you have hepatitis c or not, everyone deserves to be with someone who will be there for them when needed. I now know I was really sick (hep c), I just didn't know what was wrong, and it saddens me he wasn't there for me when I needed him. It saddens me even more I wasn't there for myself, as I suspect _Sherr may not be there for herself (completely speculative); I will not put myself in that position again. Had I did get hepatitis c from him, and he was not in denial, sober, and trying his best, I never would have left him; I would have stayed and we would have fought it together. But that was/is not the situation.
Hi lackalustre, Thank you for sharing! I have always felt that family issues should be listed along with all other possible sides. Hahaha! It is a big part of dealing with treatment for many & it would be better to be warned so as to prepare ones self. All in all I had pretty good support during TX but the part in the posting that mentioned not looking sick but being sick really hit home. Those were the times on treatment that were the hardest, my husband & kids would have to be reminded (and not always nicely) that I needed help & understanding. Avoiding my mother on bad head days was also helpful. I know it all sounds frightening to the newly diagnosed but all I can say is be thankful for this forum. It sure helped me prepare as best as I could for the 48-week haul.
All my very best!
All my very best!
GALEN SAID IT ALL!!!!!! And yes you have ruffled my feathers! I was an addict, before I even knew what an addict was! But w/ the unconditional LOVE FROM MY FAMILY....I made it thru. So if you don't like what you read here.....then don't come here! Don't you think we have "Dumped" on ourselves enough???? I have been drug free for 10 yrs., thought I'd really done things w/ my life since then...only to find out I had Hep C. My Mother hasn't wanted to talk about it much, and I didn't even know what Hep C was. I cried and blamed myself for a long time....so, miss "goodie two shoes".I've had my say!!! If you are having a pity party....then get off your a**, and do something about it!!! If you've never been an addict then YOU HAVE NO CLUE!!!!! Believe it or not it is a DISEASE!!!!!!! And NO fun at all. I feel sorry for your poor husband. You never know what you will have to face in the future!!!!! GOOD LUCK and prayers to your sick husband. Cindee
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