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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 paradox.

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 future.

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 by illness.

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 one.

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 continued.

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.

Jason Scott McClure


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