Having hepatitis C virus, as with any invisible chronic illness
means that your life as you once knew it is changed. Just because
you can't see those changes doesn't mean they are not there and
felt by us.
Most people don't understand hepatitis C and cannot imagine what
living with a chronic illness means. With the hope that there are
some who wish to understand, these are some of the things I'd like
you to know about us.
Please understand that being sick doesn't mean we are not still
human with all the same emotions that healthy people experience.
Some of us must spend our time carefully so that we conserve what
little energy we possess. If you visit we may not be much fun, but
we still love and appreciate company. Some of us worry about our
jobs, schooling and families. Most of the time we'd like to hear
what is going on in your life as well as sharing our lives.
Please understand that one can be happy but not healthy. When you
have the flu you feel fairly miserable, but we've been ill for years.
We can't be miserable all the time, in fact most of us work hard
at not being miserable. So when you speak with us and we sound happy,
it means we are happy. That's all. It doesn't mean we are not sick,
in pain and extremely fatigued, or that a miracle cure has been
found and we are all healthy once again. Please don't say, "Oh
you're sounding better!" We are not sounding better, we are
sounding happy. Feel free to remark about our happiness. Just don't
assume that it means we are better.
Please understand that being able to stand up and participate in
an activity for 15 or 20 minutes, doesn't necessarily mean that
we can participate for 30 minutes or an hour. It's quite likely
that doing that 15 minutes has exhausted our resources and we may
need time to recover. Remember the last time you played a swift
game of tennis or softball. You couldn't repeat that feat over and
over again. This applies to every thing we do.
Please understand that chronic illness is variable. It's quite
possible that one day we are able to walk to the park, or shop in
the mall, while the next day we may have no energy at all. Please
don't say, "But you did it yesterday." If you want us
to do something, just ask and we will tell you if we are able. If
it is necessary to cancel an appointment with you at the last moment
, please don't take it personally. There are days when we feel great
and all of a sudden that changes and the fatigue is overwhelming.
Please don't ask us how we got this disease. There are many ways
to acquire hepatitis C. Some of us made a foolish choice to experiment
with IV drugs when we were young and invincible. Some of us were
born with hemophilia and need to use blood products to stay alive.
Some of us were given blood transfusions before 1992. Some of us
are veterans who fought proudly for our country and some of us are
kidney dialysis patients as well. Many of us have no risk factors
at all and do not know where we got hepatitis C. If we wish to share
our medical history with you, we will. Please don't be afraid to
hug us, kiss us or hold us. You cannot "catch" hepatitis
C from us unless there was a mixing of our blood with yours.
Please understand if we tell you that we have to sit down, lie
down or take our meds, that we have to do it now. Chronic illness
doesn't wait for a convenient time. It does not feel good to have
to stop what we are doing to tend to our health. Remember that we
didn't ask for this. We mourn for our lives before illness, when
we were free to pursue all our dreams and hopes. We hope you understand.