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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

        

WHEN FAMILY MEMBERS JUST CAN'T UNDERSTAND

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