“If you judge people, you have no time to love them.” Mother Teresa of Calcutta
My mother recalls when her older sister, Kay, had smallpox. A bright red quarantine sign was posted on their front door and the children with whom they had played just days before now crossed to the other side of the street to avoid walking in front of this “infected” house. Social isolation was a vital and appropriate part of controlling this highly contagious and deadly disease.
Decades later, my mother’s family again experienced an episode of social isolation, but this time for a non-contagious disease: my grandfather’s cancer. Stomach cancer is not contagious, but in the early 1960s society had a palpable fear of “catching” cancer. That fear was fueled in large part by popular media; in a cover story in 1962, Life magazine declared: “Cancer May Be Infectious.” Researchers had just identified a particular cancer as a virus, and the conventional wisdom of the time was that all viruses were highly contagious and incurable. Speculation soon led to fear: could quarantine prevent the spread of cancer?
At the height of the AIDS outbreak in the 1980s, I was working in ICU where many young men dying alone with this disease. Because so little was known about AIDS and so much media coverage was again spreading fear and ignorance, some of my coworkers became so fearful of contracting the disease that they would limit the comfort that human touch can bring. They refrained from doing the things they would do with any other ICU patient, such as offering a gentle and reassuring touch on the arm or spooning ice chips over cracked lips and parched mouths. Those of us who followed the medical precautions of those times while still maintaining compassionate contact with AIDS patients did not “catch” this disease – and we were able to experience the quiet peace that comes from comforting others in desperate need.
Today, thanks to breakthrough research and medical advances, we know so much more about the causes of many diseases. We know, for example, that some types of diseases are contagious and potentially deadly (AIDS, TB, influenza) but we can easily learn the facts about how these diseases are contracted, how they spread, and how they can be prevented and treated. Yet despite all we know, we still see far too many instances of social segregation, isolation, and under-treatment for diseases that are not contagious – such as ALS (Lou Gehrig’s Disease), MS, cancer, and Alzheimer’s Disease.
Sometimes the “social segregation” expresses itself most clearly as stigmatization: we believe the patient (and his family caregivers) are responsible for their disease because of poor lifestyle choices or personal weaknesses. Consider:
· For years, cancers of the breast or testicles were silent killers because talking about these diseases was too intimate or too lurid for some, including doctors and nurses.
· Science has clearly demonstrated that there is a genetic predisposition to alcoholism, yet so many continue to shun the alcoholic and his family because we believe they simply lack willpower or have made poor moral choices.
· Too many still believe that HIV/AIDS is contagious through any contact – and that the patient’s suffering is God’s punishment.
· Too often the first reaction to hearing someone has lung cancer is to ask, “Did he smoke?” and then proceeding as if this makes the suffering somehow less acute (or the sufferer less worthy of compassion).
When society treats some diseases as the inevitable consequence of personal weakness or bad choices, it limits our sensitivity, compassion, and even physical presence.
All disease is psychically isolating for patients and their loved ones, because no one can really know the extent of another’s suffering. When we add social isolation and stigmatization to the mix, we do a horrible disservice to the suffering, to their family, and to our own sense of humanity.
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