Letter to People Without 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 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, 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 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.

This letter my friend, family, ect... is how we feel having this chronic disease called; Hepatitis..
When I was earlier diagnosed in 2000, I was in a group at the American Liver Foundation where I had read this letter
and kept it with me since then. Had made a copy for my family members, & close friends. To this day this applies for
me, even though I may not be poz for hep c anymore I still feel like I do due to the 48 weeks of treatment I have done.
Unfortunately I am still stuck with all of the symptoms of Hep c. But live one day at the time.

ps: For those who are going on Dissabillity Pension, I strongly suggest that you add this letter to your application, along
with your other diagnoses over the years... that's what I am doing now, and this will definitely help.

love u all friends.. Mx