GOOD...FEELING OTHERWISE by Jason Scott McClure
of Quantum Media Group August 31, 2003
Hepatitis C affects our
liver, body, mind, and spirit. Even when others know
that we have this progressive disease, we may not
show obvious or readable signs of discomfort, sickness,
and suffering. Consequently, we will often hear from
well-meaning people that we "look good"
despite the fact that we may be feeling "otherwise".
It may be experienced and endured by all HCV individuals
at least once during the course of this disease. It
could very well be thought of as both a blessing and
a curse; it certainly can be thought of as a medical
Seventy percent of the body's sense receptors cluster
in the eyes, and it is mainly through seeing the world
that we appraise and understand it. Seeing is proof
positive, we stubbornly insist. Of course, most of
us have learned from feats of magic, tricks of perception
that it is not possible to believe in everything we
see. While on the other hand, some of us have learned
that beliefs in religion, and even some areas of science
make it possible to trust some things we can't see.
And because the eye is always trying to make sense
of life, if it encounters a puzzling scene, it corrects
the picture to what it knows. If it finds a familiar
pattern, it sticks to it, regardless of how inappropriate
it might be in that landscape or against that background.
Eyes gather light. However, seeing, as we think of
it, doesn't happen in the eyes but in the brain. Color
doesn't occur in the world, but in the mind. The visual
image in our head is a tripwire for the emotions.
If humans rely simply on their senses, specifically
what we see and feel, then the outward appearance
of other humans would seem to be the only information
needed to gauge another human's condition of life
or health. Obviously, this is not a desirable, reliable,
or valid practice, but a limiting, insensitive habit
or judgment which scarcely reveals the inner life
or condition of an individual. What people see, can
be deceiving. Why people perceive what they do from
the faces of others is a baffling phenomenon.
For those of us with malfunctions due to chronic
hepatitis C, our outward appearances often belie the
serious physiological consequences and the emotional
/ psychological distress of our disease. We are individuals
whose lives have been altered, who must suddenly attempt
to deal with ongoing illness, pain in some instances,
physicians, specialists, special tests and procedures,
changing economic times, while trying to preserve
an emotional balance, a satisfactory self-image, employment
positions/career goals, and relationships with family
and friends. These are all important tasks that call
upon our coping skills as we prepare for an uncertain
We all know how much we put into managing and making
sense of our disease. We seek reassurance and emotional
support from family, friends, and the medical community
to help alleviate stress, fear and discomfort. Hepatitis
C patients find themselves in the precarious and unenviable
position of having to cope with illness and its attendant
problems, and having to cope with life as it is altered
We expect our medical caregivers to bear in mind
the various emotional responses that can be elicited
by the diagnosis of chronic hepatitis C. The disease
represents a possible threat to life, after all. We
feel vulnerable and therefore we can sense a loss
of control in our lives. We can feel isolated, rejected,
dejected, unaccepted and misunderstood. These are
issues that all chronic disease patients must deal
with and hopefully overcome.
The fears of disease are often subordinate to fears
of abandonment, unacceptability, and isolation in
many chronic disease and cancer patients. If these
fears persist, unresolved, an intense sense of alienation
can set in leading to bleak hopelessness and depression.
Feelings of alienation frequently stem from the reactions
of those around us. HIV/AIDS patient know these feelings
of alienation all too well.
Stigmatized as the "new lepers" of modern
times, these patients acutely experienced the tide
of misunderstanding, ostracism, abandonment and were
made to endure a social death which preceded the physical
Nearly all of us are acquainted with the expression
of full blown AIDS that has manifested in humans by
way of media coverage or personal observation. If
we can agree that there is a model or concept that
represents the word, SICK, then quite possibly we
can collectively concede from all we've seen that
the appearance of end-stage AIDS patients as well
as end-stage cancer patients summarize the concept
of sick in our minds.
Our strongest perception of sick regarding other
people, obviously is based on our visual acuity. Once
again, our eyes trying to make sense of what we see.
When the TV newscaster provides the audio cue that
what we are about to see is an AIDS patient, dying
from his/her disease, our minds are prepared to receive
the image of a person who is indeed sick and one who
conforms to the concept of sick. Expectations are
fulfilled when we view pale skin, the lesions of Karposi's
sarcoma, emaciation, dull eyes, and so on. Our past
knowledge of what defines sick accomodates the new
spectre or expression of AIDS.
In addition to our past knowledge, this human visual
concept of sick also prepares or predicts in our minds
future images of how an individual will appear as
a particular disease runs it course. Thus, it enables
our cognitive processes to project visual expectations
of how someone will look in the future under the sentence
of a known disease.
People actually use rules to identify concepts. The
coupling of the words, "sick" and "person"
are similar to the idea of describing a "square"
as being "red." Both concepts have two attributes
at the same time. To belong to these concepts, an
item must be both a person and sick, or a square and
red, respectively. In the real world, concepts such
as the "red square" may be clearer in our
minds than the "sick person." Add to this
reality the fact that some items are more typical,
or better examples of a concept, than others.
There seems to be a clear consensus on which items
of a category are typical and which are not. For example,
a robin is a typical bird, a chicken is not; murder
is a typical crime, vagrancy in not; and an apple
is a typical fruit, but a fig is not. Differences
in typicality may determine how information is stored
in long-term memory. More typical instances are easier
to recognize as belonging to any particular concept.
A pure concept of a bird, for example, is defined
by certain characteristics, such as wings and feathers.
Atypical birds like chickens, penquins, and ostriches
tend to exist at the outer fringes of the bird concept.
In the concept circle of "sick people,"
chronic hepatitis C individuals may be plotted somewhere
on the outer rings of typicality.
If others happen to be aware that we "suffer"
from an incurable, progressive, chronic, potentially
fatal, life-shortening viral liver disease, they will
undoubtedly attempt to behold visual signs to confirm
and reinforce this grim prognosis in their minds.
For those of us who are symptomatic, experiencing
the malaise, fatigue, flulike symptoms, nausea, and
more, the expression of our ongoing disease oftentimes
does not manifest a physicality that truly communicates
our inward condition. What we feel, subjective symptoms,
do not always result in physical, objective signs.
This is a blessing or a curse, depending on how we
look at it, and how others deal with the concept of
our particular disease.
Unable to perceive the typical, telltale signs or
countenance of sickness despite the knowledge that
we have a serious, chronic disease, many people may
conclude that we do not fit into that pure concept
of "sickness," prompting the often heard,
almost irksome, sometimes thoughtless pronouncement,
"You look good!"
Arguably, it may be an innocent, well meaning observation,
positive in its tone that aspires to bolster and uplift
our spirits and psychological well being in the face
of a serious illness. We find that we are readily
able to recognize, accept and appreciate such sentiment
as being genuine and derive its intended benefits
when offered by someone we judge, sense or know is
mindful of the seriousness of our medical condition
and at the same time compassionate. Family and close
friends who are invested in our health and welfare,
emotionally and socially possess these attributes.
Friends and family members who care communicate concern
and affection, and seek to boost our self-confidence,
for instance, when they advise that "we look
good." They also affirm our identity and present
medical crisis, promoting emotional support, connectivity
and good feelings.
Well-meaning, unhelpful reassurances such as "You
look good" and "Everything will be fine"
are often uttered by people, even by friends and family
members who don't know what kind of support to offer.
Unfortunately, these blunders can cause us distress.
For someone's words, advice, and sympathy to be effective,
we must feel the person understands, and has an accurate
idea of how we're feeling and what we're up against.
Otherwise, we may experience that uncomfortable, hurtful
encounter with an acquaintance, physician, coworker,
friend or family member, who trivializes or misunderstands
our medical predicament.
It has been this medical writer's experience to read
notes, Internet email and bulletin board posts written
by hepatitis C patients, regarding this subject. Often,
one post that relates such an incident begets a lengthy
thread of posts on the topic. Apart from the shared
symptoms of a common disease, this unpleasant, potentially
aggravating event may well rank as one of our chief
complaints, especially on those occasions when it
is expressed in an accusatory manner. The following
was related to me on the phone.
I had been so fatigued and achy for three straight
days, offered Tim R. So I did the only thing I could
do, I slept for hours and barely moved from bed, he
After a week's time, I went with my wife and kids
to the grocery store. Two minutes after entering the
store, I encountered someone from my work. I had been
on long term disability for seven months due to chronic
hepatitis C. My coworker sauntered over, greeted me
with a smirk, looked me over and told me that I looked
good! What could I say? I think, I said something
idiotic like, thanks, because I was truly at a loss
for words. When she asked me when I would be going
back to work, I knew she didn't have a clue as to
the seriousness of my health. I remembered that I
felt somehow embarrassed, very uncomfortable and hurt
by her discourteous tone and her opinion that I didn't
look sick. After this coworker moved along, my wife
expressed some of my frustration and dismay when she
shook her head and said: If only she knew what you
went through in the first place just to be able to
make it here today.
This phenomenon of looking good, feeling otherwise
is both a reality and consequence of living with a
chronic disease that slowly, silently scars and injures
an internal, hidden organ system without showing its
mark on our surface. When the observer says what he
thinks, he may not necessarily be speaking the truth
and this distortion should not be taken to heart by
the one being observed.
"When you meet a man, you judge him by his clothes;
when you leave, you judge him by his heart (Russian
proverb)." It is the nature of friendship, understanding,
emotional support, and effective communication that
is healing, for we are all physicians to each other.