An Open Letter To Those
Without HCV
Having Hepatitis C means that many things
change. Just because you can't see the changes doesn't mean
they aren't real.
Most people don't understand much about this
disease or the disability the treatment causes and their
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 HCV and its treatment doesnt mean I'm not still a
human being. I have to spend most of my day being very
careful what I do, and if you visit I might not seem like
much fun to be with, but I'm still
me stuck inside
this body. I still worry about school 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. I may be tired. I may
be in pain. I may be sicker that ever.
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 five minutes,
doesn't necessarily mean that I can stand up for ten
minutes, or an hour. It's quite likely that doing those five
minutes has exhausted my resources and I'll need to recover
- imagine an athlete after a race. They couldn't repeat that
feat right away either.
Please repeat the above paragraph
substituting, "sitting up", "walking",
"thinking", "being sociable" and so on ... it applies to
everything that I do.
Please understand
that HCV and its treatment are 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 scold me when I'm ill by
saying, "But you did it before! If you want me to do
something, ask if I can and I'll tell you. In a similar
vein, I may need to cancel an invitation at the last minute,
if this happens please don't take it personally.
Please understand
that "getting out and doing things" does not
make me feel better, and can often make me worse. HCV (and
if on treatment) may cause a secondary/reactive depression
but they are not caused by depression. Telling me that I
need some fresh air and exercise is not correct and probably
not appreciated - if I could possibly do it that, I would.
Please understand
that if I say I have to leave/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 doing something else more exciting. HCV does not forgive
their victims easily.
Please understand
that I can't spend all of my energy trying to
get well from my chronic illness. With a short-term illness
like the flu, you can afford to put life on hold for a week
or two while you get well. But an important part of having a
chronic illness is coming to the realization that you have
to spend energy on having a life
while you're sick/disabled.
This doesn't mean I'm not trying to get better. It doesn't
mean I've given up. It's just how life is when you're
dealing with a chronic illness and its treatment.
If you want to suggest a cure to me,
please 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 many people suggest one at one point or
another. At first I tried to research or try them, but then
I realized that I was using up so much energy looking for
answers that I was making myself sicker, not better. If
there was something that cured, or even helped, all people
with a certain illness or disability 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 similar and different chronic illnesses and
disabilities, and if something worked we would
know about it.
If after reading that, you still want to
suggest a cure, then do it if you must. Preferably in
writing and accompanied by the scientific papers that prove
it works. But don't expect me to rush out and try it. I
might not even reply. If I haven't had it or something like
it suggested before, and it sounds reasonable, I'll probably
take what you said and discuss it with my doctor.
Please understand
that getting
better from an illness can be very slow. And getting better
might not happen at all. People with Chronic HCV have so
many systems in their bodies out of equilibrium, and
functioning wrongly, that it may take a long time to sort
everything out, if it ever happens.
But most importantly, I need you to
understand me.
Adapted Anne with permission from "An Open
Letter To Those Without CFS/
Fibro" by Ricky Buchanan (aka Bek Oberin). Original is at:
http://notdoneliving.net/foothold/openletter/ |
