Something I Found

[Guest guest]

I found this letter online and thought I would share. It's about

Hepatitis C, but a lot of it relates to any liver disease. I've seen

similar things in the past about disease in general.

Penny

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 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 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