Letter to People Without Hepatitis C

[Guest guest]

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 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 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

exercise 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 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

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

[Guest guest]

I have had this posted on my Facebook page for months... I love this letter. TeriFrom: Christ <ludichrist2000@...>WebWarriors grp < >Sent: Sat, April 17, 2010 6:39:54 PMSubject: [ ] Letter to People Without Hepatitis C

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 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 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

exercise 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 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

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

[Guest guest]

Thank you, Bek Oberin. Your letter is succinct, clear and for the first time in

years, my Spousal Unit (also known as a husband) understands what I am going

through on a daily basis.

It's not bad enough that I'm fighting the Air Force to get them to admit that

the blood they pumped into me back in 1984 was contaminated, but I've had to

fight to try to get my husband to understand that I'm not " enjoying being sick. "

Yes, I know there are women out there like that. I had an Aunt who was always

" poorly " but when I struggle on a daily basis to get out of bed and do the

little chores that can be so exhausting and I get a disgusted look and a " well,

why don't you just.... " from the one person that is supposed to be on my side,

depression becomes a way of life.

I sent this letter with no additions or explanations to him and for the past two

days, wow, talk about a change. A whole different attitude. Thanks again, Bek,

things look a bit rosier for me now.

Ivonova

Time for an attitude check. Astonished, dumbfounded, in awe.