A Good Letter!

Discussion in 'Fibromyalgia Main Forum' started by matieofleaves803, Aug 1, 2010.

  1. matieofleaves803

    matieofleaves803 New Member

    For some reason, I went to the AIDS site just now, and I found a Great letter from a person with hepitis C that explains so beautifully what it's like to be sick for years. It turns out it's been making it's way around the internet for some time, because it is such a good letter. It address not only being miserably sick, but how we want others to be aware of in the sense that "what I can do today, might be immposible tomorrow."
    I'm not explaining it very well. I just really encourage you to go see it. It's entitled "A letter to people without Hep c."
  2. Waynesrhythm

    Waynesrhythm Member

    Letter to People Without Hepatitis C

    Note: This letter is one of the best found written for people without Hepatitis C. Please feel free to print this letter and give it to those that need to understand.

    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 secondary 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
  3. quanked

    quanked Member

    I knew I was not going to read the letter because I am just too wiped out right now to search for it.

    Very on point this letter is.
  4. AuntTammie

    AuntTammie New Member

    I have actually seen this written with the word fibromyalgia inserted where this one says hep c.....not sure which is the original or what the copywrite is on it, but I would love to use it and change it to ME/CFS/FMS....sad thing is that most people, even those who seem to want to understand won't take the time to read something like this - or like the spoon theory, which is another excellent description

    also re the part about people suggesting cures.....I know that most people who do so are well intentioned, but I am getting really bugged lately by the fact that they don't even stop to think we might possibly be doing research of our own and might actually know more about our own illness than they do.....seriously it's like people act like we have never considered trying to find treatments or might even be intelligent enough to figure out if those treatments might make sense (and/or might have already tried a lot of things and might even know our own bodies better than they do).....it's like they think we are just sitting back and not trying to get better [This Message was Edited on 08/02/2010]
  5. matieofleaves803

    matieofleaves803 New Member

    i know. I was really glad to see that about telling people to Shut Up! (Ever so nicely, of course ;)
  6. matieofleaves803

    matieofleaves803 New Member

    i know. I was really glad to see that about telling people to Shut Up! (Ever so nicely, of course ;)