Aa
My spouse and some of my friends just don't get what treatment means
I must be feeling like sharing today so tell me to shut up if I'm posting too much.
During my original tx on SOC, my wife, who I love with all my heart, just didn't get that I felt like poop and couldn't do many of the activities that I did before. On shot night she seemed annoyed that I was sensitive to light and sounds and just wanted to curl up in a ball in a quiet environment. When I told her that I was accepted into Prove 3 she said that it's my decision but I better act normal around her and the kids.
All of this is very usual because we have a child with a life threatening disease. From the day of his diagnosis we've been very supportive of him, each other and channeled our grief into raising funds for the cure for his disease. Daily we share in his care giving and therapies.
Next when I told my best friend that I was going to do the Prove 3 trial he changed the topic and acted like I was opting for some kind of elective cosmetic surgery of something. He didn't want to talk about it further.
I've shared my HCV status with very few people and how my wife and best friend reacted really confused me and hurt. Last year I had another best friend die of brain cancer that took about a year between diagnosis and his death. I called or wrote him several times per week and made several out of state trips just to touch base and make sure that he knew what his friendship meant to me.
So, as I start into the Prove 3 trial I''ve said very little to my wife about how I'm feeling and pretend with my friend that I'm not even going through treatment again. I'm not doing this our of anger but more out of confusion.
Have any of you experienced these kind of reactions from loved ones and how are you dealing with it?
Mike
During my original tx on SOC, my wife, who I love with all my heart, just didn't get that I felt like poop and couldn't do many of the activities that I did before. On shot night she seemed annoyed that I was sensitive to light and sounds and just wanted to curl up in a ball in a quiet environment. When I told her that I was accepted into Prove 3 she said that it's my decision but I better act normal around her and the kids.
All of this is very usual because we have a child with a life threatening disease. From the day of his diagnosis we've been very supportive of him, each other and channeled our grief into raising funds for the cure for his disease. Daily we share in his care giving and therapies.
Next when I told my best friend that I was going to do the Prove 3 trial he changed the topic and acted like I was opting for some kind of elective cosmetic surgery of something. He didn't want to talk about it further.
I've shared my HCV status with very few people and how my wife and best friend reacted really confused me and hurt. Last year I had another best friend die of brain cancer that took about a year between diagnosis and his death. I called or wrote him several times per week and made several out of state trips just to touch base and make sure that he knew what his friendship meant to me.
So, as I start into the Prove 3 trial I''ve said very little to my wife about how I'm feeling and pretend with my friend that I'm not even going through treatment again. I'm not doing this our of anger but more out of confusion.
Have any of you experienced these kind of reactions from loved ones and how are you dealing with it?
Mike
hi mike - ditto to what everyone said... when i told people i was going to re-treat, there was a variety of responses. i have learned to share only with people who i feel are "positive" about my situation. i have several close friends i can talk to, a few people at work, and fortunatly a supportive husband and sons'. i don't answer my phone much - cause i don't want to keep being asked "how are you feeling?" - i let the machine get it and then return calls when i feel up to it. luckily my friends understand - they know when i don't want to talk and they respect that. the tricky part of this whole treatment thing is - that for the most part, most of us look good - the other day i stopped in to work and my boss said "you look fabulous!" - i jokingly said "well, too bad my insides don't feel as good as my outsides look!", with that, he gave me a hug. so, my suggestion would be - find a few people you feel comfortable with, who fully understand what you're going thru, and reach out to tham when you can. you're not alone in your feelings.
peace & blessings,
w.c. missy
peace & blessings,
w.c. missy
All you oldtimers may have seen this before but it's been over a year and has bearing on this thread. So here goes again.
Having Hepatitis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about HCV and its effects, and of those that think they know, many are actually mis-informed.
In the spirit of informing those who wish to understand ... These are the things that I would like you to understand about me before you judge me...
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing. Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what Hepatitis does to you.
Please understand that HCV or HBV is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that "getting out and doing things" does not make me feel better. Telling me that I need a treadmill, or that I just need to loose (or gain)weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the excercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity.
Also, Hepatitis may cause condary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive.
If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with hepaititis then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Hepatitis if something worked we would KNOW. If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.
In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outsideworld... if you don't come to visit me, then I might not get to see you... and, as much as it's possible, I need you to understand me.
Authored by Bek Oberin
Having Hepatitis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about HCV and its effects, and of those that think they know, many are actually mis-informed.
In the spirit of informing those who wish to understand ... These are the things that I would like you to understand about me before you judge me...
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing. Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what Hepatitis does to you.
Please understand that HCV or HBV is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that "getting out and doing things" does not make me feel better. Telling me that I need a treadmill, or that I just need to loose (or gain)weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the excercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity.
Also, Hepatitis may cause condary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive.
If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with hepaititis then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Hepatitis if something worked we would KNOW. If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.
In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outsideworld... if you don't come to visit me, then I might not get to see you... and, as much as it's possible, I need you to understand me.
Authored by Bek Oberin
people have such a lack of understanding - despite explaining the disease and what to expect. i thought this would have garnered some kind of understanding or support, i felt very alone and misunderstand, and also found the quiet darkness of my room preference to anything.
i also was discouraged from talking complaining or any other manner of speaking about my situation. i began tx w/o support from this forum (though reading prior to beginning tx, i joined the forum at about 3 mths in. i really needed the kind of understanding that can only be obtained from others in the same situation. i thought about therapy, but i don't think my energy levels could have taken on another obligation.
sunspot - that was a wonder post. thank you for sharing it. i would like to print that one out. despite the fact i a 5 wks post tx - the way i feel on any given day is still so unpredictable. just like your post.
thank you all for being here.
i also was discouraged from talking complaining or any other manner of speaking about my situation. i began tx w/o support from this forum (though reading prior to beginning tx, i joined the forum at about 3 mths in. i really needed the kind of understanding that can only be obtained from others in the same situation. i thought about therapy, but i don't think my energy levels could have taken on another obligation.
sunspot - that was a wonder post. thank you for sharing it. i would like to print that one out. despite the fact i a 5 wks post tx - the way i feel on any given day is still so unpredictable. just like your post.
thank you all for being here.
Unfortunately, what you describe happens all too often. I know it did with me, my family and my "friends".
The first 4-6 weeks was the 'honeymoon' period where everyone offered their support. "How can I help..just let me know what I can do..I'm there for you...just call me for anything".
Later people seemed either not inclined to talk about it -- they would change the subject right away -- or stopped returning phone calls. As to "friends" -- probably activity partners is more of a suitable phrase for most, and since I was unable to do any activities -- other than couch sitting -- those relationships disappeared. People just don't *get* what a chronic illness can be. It's not just a visit or two in the hospital and a trip to the drug store. It goes on and on and on.
I don't know what to advise. Certainly some here have noted that they have a great support system with friends and relatives, but again, your story is very common.
I guess you can hold onto the thought that once treatment is over and the "old you" returns that friends and family will be back, I found that out. Thing is how many of them do you really want back. Sorry for the cynicism but wanted to let you know that you're not alone.
All the best,
-- Jim
The first 4-6 weeks was the 'honeymoon' period where everyone offered their support. "How can I help..just let me know what I can do..I'm there for you...just call me for anything".
Later people seemed either not inclined to talk about it -- they would change the subject right away -- or stopped returning phone calls. As to "friends" -- probably activity partners is more of a suitable phrase for most, and since I was unable to do any activities -- other than couch sitting -- those relationships disappeared. People just don't *get* what a chronic illness can be. It's not just a visit or two in the hospital and a trip to the drug store. It goes on and on and on.
I don't know what to advise. Certainly some here have noted that they have a great support system with friends and relatives, but again, your story is very common.
I guess you can hold onto the thought that once treatment is over and the "old you" returns that friends and family will be back, I found that out. Thing is how many of them do you really want back. Sorry for the cynicism but wanted to let you know that you're not alone.
All the best,
-- Jim
were here for ya buddy and each other. Yup!, same reaction from sisters. Ho well ****'em I'm living for me cuz me is the only one I got.
jasper
jasper
I'm so sorry that you have had little or no understanding from your wife and best friend re: your treatment. It's very hard for many people to understand what we are going through that's why these support forums are so wonderful.
My younger son and his wife wouldn't even let me hold me new grandbaby for a couple months because they thought I was contagious. I had to have the doctor send them all this stuff on how you get hep. C. You cannot get it casually. Many people have hep. B and C mixed up or Hep. C and HIV.
There are brochures at the doctor's office you can give your wife and friend, etc. That explain better what we are going through and why sometimes we feel so badly. I hope you can get some of them. This is not the flu.
My younger son and his wife wouldn't even let me hold me new grandbaby for a couple months because they thought I was contagious. I had to have the doctor send them all this stuff on how you get hep. C. You cannot get it casually. Many people have hep. B and C mixed up or Hep. C and HIV.
There are brochures at the doctor's office you can give your wife and friend, etc. That explain better what we are going through and why sometimes we feel so badly. I hope you can get some of them. This is not the flu.
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