Writing a book is so fun! I keep stumbling upon many websites that have much to offer. Today, I found a website of a young woman who has Lupus. She developed what is called "The Spoon Theory" which is a way of explaining what having a serious chronic illness feels like to the person who has it. Please check out the link and read her article. It is not only brilliant, but aptly describes how it feels to live with invisible chronic illnesses.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
Hi Sue. I couldn't get the link to work to the Spoon Theory but I am sure it probably says much the same as the Open Letter to People Without Hep C that has been circulating as far back as the late 90's. It was written by a fibromyalgia patient but fits a lot of diseases. Putting it here just in case someone surfs by that hasn't seen it. Keep up the good work with your blod and thank you for sharing your life with Hep C and helping to educate about it.
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Open Letter to People About Hepatitis
Well I got a note that says it is too long so I will try to post separately.
Part 1 - I have Hepatitis C. 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 misinformed. 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
ReplyDeletebeing 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.
Part 2 -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 lose (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
ReplyDeleteneed 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 Hepatitis 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 outside world... 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 Fibro Patient