21st Century Aging

Living longer and better.

Ribbons, Bracelets, and Disease

The politics of illness

 

A recent trip to a breast health clinic for my yearly mammogram made me think about the different subcultures of healthcare in the U.S. My mammogram experience was perhaps the best medical encounter I have ever had. The staff, professional women dressed in pink scrubs, were kind, patient and thoughtful--they were even excessively apologetic when I waited a long time for my appointment.  The waiting area was warmly decorated in soft-hued blue and yellow furnishings. Even the ceiling was covered with beautiful images of open skies. I could have been at a spa awaiting a massage, rather than a routine breast exam, too often laden with anxiety. 

When I got home, I recalled a comment made by one of the nurses who I worked with in a thoracic oncology clinic well over a decade ago. Our patients all had lung cancer. A seasoned nurse, who took it upon herself to help orient me to the clinic, told me this about our patient population: "There are no ribbons for us, (this was before the lung cancer ribbon was introduced), no races for cures, only stigma."

The politics of illness are complex. Certain diseases have large communities of support, celebrity spokespeople, and ample funding. The financial aspect of disease can be overtly visible, such as in two side-by-side clinics in a medical building where I used to work. One clinic had an old waiting room nearly in disrepair, with uncomfortable chairs and a worn ceiling. The other clinic, with big financial donors, had new chairs and office equipment and was set apart by cut glass with accented designs. Another nurse remarked that this clinic looked like more like the entrance to a flagship Nordstrom!

Of course, it is understandable that some illnesses, especially more common diseases, would attract more community support and even research dollars (which come from both private and public resources). But, as the case of lung cancer exemplifies, risk of mortality does not necessarily translate into large-scale community support. Lung cancer causes more fatalities than any other kind of cancer.

Although there may be many reasons for the prevalence of lung cancer, presumably, the fact that smokers get lung cancer is but one explanation. However, as we all know, even people who don't smoke can get lung cancer. Yet, in the curious industry of ribbons and bracelets devoted to raise awareness (as well as support for people stricken with illness), there are two ribbons for lung cancer. One ribbon is reportedly for nonsmokers who have the disease, whereas the "other" lung cancer shares its ribbon with 5 other diseases, including emphysema.

The most recognizable emblem of support for chronic illness, the ribbon, reveals how lung cancer is perceived by the public.  And for many people with disease, ribbons are a hot topic. One person with another relatively common autoimmune disorder recently told me that people with his condition had to "share" a ribbon with another disease. He was angry. Where is the specific ribbon that marks his unique aspect of suffering and disability?

A better question might be: Why do certain diseases gain our attention and financial support?

In the case of breast cancer, the answer seems obvious. This is a frighteningly common disease. The incidence has increased in our lifetime (but has decreased since the 1990's) and causes remain elusive. And even though most experts say that breast cancer is now considered a chronic illness, (as mortality rates have dramatically declined), the thought of having a malignant tumor in a most private, feminine and literally life-supporting part of the body is nothing any of us want to endure. The anxiety, and even terror, surrounding breast cancer is understandable.

Yet, I think of my patients who have had various types of autoimmune or neurological diseases who don't receive the same kind of attention and social support, because their disease does not receive widespread public and media coverage.  They feel alone and isolated, and are not sure where to turn. And as many of my patients have pointed out, when they have diseases that are not as well-known, they have a lot more explaining to do--especially if you can't see what's wrong with them. Friends and family may just not understand how a new medication doesn't work right away or how chronic pain, or fatigue, invisible and limiting symptoms, do not just go away with a doctor's appointment.

Certain illnesses just seem to tug at our heartstrings more than others. And as a woman who has recently had a breast cancer exam, I can understand why. But in my work, I am often reminded of people who have diseases that don't capture the attention of the popular media and for whom the ribbons, bracelets, walks and races are not a part of public consciousness. They tell me that the support they receive just isn't the same. And they have to look harder for support groups and a general sense in the culture-at-large that their suffering is valid and worthy of research and awareness. Perhaps we should try to understand that suffering from any disease is frightening, and not just limited to those diseases that we are immediately aware of and are in the public eye.

Tamara McClintock Greenberg, Psy.D., M.S., is an Associate Clinical Professor of Psychiatry at the University of California, San Francisco.

more...

Subscribe to 21st Century Aging

Current Issue

Let It Go!

It can take a radical reboot to get past old hurts and injustices.