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A Letter TO People Without Hepatitis

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 AIH 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 to do so.

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 AIH or

HCV is variable. It's quite possible (for me, it's common) that one day I am

able to walk to th 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

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 AIH 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 singleactivity.

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 he 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 to 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.......

GINGER

Ginger-gehud119@...