A VIEW FROM THE OTHER SIDE My loved one has been diagnosed with Hepatitis C. What devastating news. What is this disease? How has it changed our lives? For me, it meant giving up a great deal of my fun in life. My husband and I had a nice-size, live-on boat. We docked it on the Delaware River, and spent every weekend on it. We took trips to the Chesapeake, and partied with great friends all weekend long. We made decent money between us, and could pretty much do whatever we wanted, whenever we wanted (except for the demands of our ten year old daughter!). We put a down payment on a luxery townhome, and then got the diagnosis. After 15-20 years of unexplained illnesses and elevated liver enzymes, my husband was told he had Hepatitis C. I'm sure this story is sounding very familiar to you already. We had to back out of the new townhouse, sell the boat, pretty much alter our entire lifestyle. Now our social life consists of an occasional dinner out, not too far away, and maybe a weekend somewhere within a 1 1/2 hour distance, so as not to tire my husband out too much. I really miss "the old Steve," who was spontaneous, energetic, exciting, charismatic, even pirate-like in his nature. Now, we can't plan for anything because we never know how he'll feel. The purpose of this writing is to help you understand your loved one. After knowing Steve for 20 years, the strong spiritual bond we've formed has helped me to get somewhat into his mind and soul. Although he doesn't look sick, he is very, very sick, and it takes every effort he can possibly exert to get himself going at all. I recently had a very bad case of bronchitis and felt sooo bad, I couldn't get out of bed. I thought to myself, is this how Steve feels every day? The answer is YES. Think about it. How much could you do if you felt like thatevery day? Then, do you wonder, how is it that he's too sick to do anything, but all of a sudden he'll jump up and announce that he's going to the computer store. And I say, "oh, you're fine to go to the computer store, but you're too tired to take out the trash!" The reason is, Hep C people are trying to cope with an incurable disease. Can you imagine how you would feel to know that? Then, they get a sudden burst of energy, and need to feel that they've accomplished something in their lives for that day. Please understand, and give these people the freedom to do what they need to do. Of course, we have needs, too. But we have our health. These people are sick, and quite seriously, barely have the strength or energy to do anything. There's a saying that goes, "If you love something, let it go. If it is true love, it will come back to you." Love them, be there for them, support them. *This letter was taken from the October, 1998 Hepatitis C Foundation Newsletter "Hep C World". A Letter To The Healthy Being diagnosed with HCV (Hepatitis C Virus) means a lot of invisible changes. Most people do not know about HCV or understand it's effects. Many of those that think they know, are actually mis-informed. HCV attacks the liver, which is one of the most valuable organs that we have. It removes the toxins from our systems. It metabolizes the food we eat and cleans our blood. To help you better understand what we, the HCV person goes through, please read the following before you judge us. Please understand that being diagnosed with HCV doesn't mean that we're not human beings anymore. We spend many of our days in pain, exhaustion, confusion and frustration. We still care about school and work, our families and friends. Please understand the difference between "happy" and "healthy". As we learn to live with a chronic illness that has no known cure at this time, we work very hard to be cheerful. So if we sound happy, it means that we're happy...that's all. It doesn't mean that we're not in pain, or extremely tired, or that we're getting better. Please understand that HCV has its ups and downs. It's quite possible (for us, it's common)that one day, we'll be able to walk to the park and back, while the next, we'll have trouble getting out of bed. Please have compassion for the frustration that we're feeling. Please don't attack us by saying "But you did it before!" If you want us to do something, please ask if we can. There may be times when we need to cancel out at the last minute. If this happens, please don't take it personally. Please understand that "getting out and doing things" does not always make us feel better, and can often make matters seriously worse. Another statement that hurts is, "You just need to push yourself more". If we were capable of doing more, don't you think that we would? We want to live as normal a life as possible, however, we can't always do that. Please understand that if we say that we need to sit down or lie down, or take these pills or this injection now, that we really have to do it right now. It can't be put off or forgotten HCV does not forgive. Please understand that being able to do something for five minutes, doesn't necessarily mean that we can do something for ten minutes, or an hour. This includes "walking", "thinking", "being sociable" and so on; it applies to everything. That's what a fatigue-based illness does to you. With many diseases you're either paralyzed, or you can move. With this one it gets more confusing. Please understand that this disease is transmitted by blood. As it takes only a minute trace of blood to carry HCV from person to person, please do not accuse us of being drug addicts. Blood to blood contact can occur in a wide variety of ways. We are your neighbors, your health care workers, your police officers, your politicians, your church congregation. Just about anybody you can think of, could have HCV. Please understand that if you want to suggest a cure or a course of treatment to us, it's often better not to. It isn't that we don't appreciate the thought, or that we don't want to get well. But there is networking worldwide (both on and off the Internet)between people with HCV, the drug companies and the doctors. If there was a cure or course of treatment that cured, or even helped all the people with HCV, we would know about it. Please understand that in many ways we depend on you, the people in our lives who are healthy. We may need you to help us with the shopping, cooking or cleaning. We may need you to take us to the doctor, or to the hospital for various tests and procedures. We may need you on a another level too ... emotional support to keep us going for another day. Sometimes you're our link to the outside world when we don't feel up to going out. Please understand that depression and irritability are effects of both HCV and of the drugs that we take, to try to keep our livers alive until there is a cure for this disease. Sometimes our emotions can go out of control. When we seem difficult to deal with, please try to take time out from us gently rather than walk away in anger. We really don't want to act this way, and when we do it hurts us deeply as well. Please understand that most of all, in spite of everything, we hope that you will continue to love us . . . these victems of Hepatitis C, the "Silent Epidemic". The origional URL for this piece is: http://www.tertius.net.au/cfidsfms/openletter.html (Bek Oberin) Adapted for HCV August, 1998 RETURN TO HEPATITIS C PAGE