Letter to People Without Hepatitis C

[Guest guest]

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.

Letter to People Without Hepatitis

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, exe!

rcise 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