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This is the first in a three-part series on chronic illness and medication that we will be posting over the next few weeks. Medications and supplements are a huge part of the lives of most people living with chronic illness, pain and fatigue. Part 1 will address the question of whether medication is a “crutch” or a life-saver. Part 2 will address the question of how to sift through medical claims and miracle cures most people with chronic ailments are bombarded with in their everyday lives. Part 3 will address the more mundane aspects of managing medical regimens, especially keeping track of multiple pills and procedures that assist chronically ill folks to live more independently and fully.
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There has been a major shift in the United States in the area of public health. Before the Reagan revolution, public health meant addressing identifying epidemics, containing communicable diseases, and providing vaccinations and hygiene education to promote prevention. Since 1980, the emphasis has increasingly shifted to “lifestyle” factors such as diet, exercise and sexual behaviors. While these factors do help in prevention, 30 years later, the trend has been to overplay these factors to the point of blaming the victim.
A little lesson in Sociology might help at this point. Talcott Parsons doesn’t command the respect he once did, but his description of the sick role is a telling one about the medical model. Basically, a person who is sick is allowed social privileges (care from others, break from school or work, time off from household and familial responsibilities) in exchange for on basic responsibility: get well as soon as possible. Usually this involves following doctor’s orders among other behaviors. But the expectation is that one will get well.
Chronic illness throws this off. The patient does not get better any time soon. Sometimes never. So after the initial phase, the sick person and their social support system are in uncharted territory. Norms no longer serve as the shortcuts they usually do and people have to work out what to do on their own.
Medicines are a part of the “get well soon” scheme. “Following doctor’s orders” and “taking one’s medicine” are signs that a person is meeting their responsibility. When they don’t get well, everything gets questioned. Is the person really sick? Are the medicines the right ones to take? Do we need a second opinion?
This is where the lifestyle risk factors get convoluted into what some have called healthism. The reasoning goes like this: the person wouldn’t be this sick if they had done everything they were supposed to do such as eat healthy foods, exercise regularly, got plenty of rest, and avoided bad sex, bad drugs, and bad behaviors. In short, this isn’t supposed to happen to people who “take care of themselves.”
An Apple a Day? A Pill a Day?
Next, step is to demand that the chronically ill person start doing those things that they should have done to avoid getting into the condition they are in. “Shape up!” This transfers the responsibilities back onto the person playing the sick role. Privileges are gone. You didn’t follow doctor’s orders. You didn’t play the role correctly. So now you must take responsibility for your health.
Medicine now transforms from a symbol of compliance and responsibility and self-care to a sign of weakness, a crutch. The thinking goes that if the person were really finally taking care of themselves, they would no longer need the medicine. So the medicine is a sign that they are not taking care of themselves.
On the surface, this may seem logical, common sense. But this only holds up if the basic premise is true, that at the heart of the matter, the chronic condition exists because of bad lifestyles. But there is little evidence that most chronic conditions are a result of bad behavior alone. Complexity undermines this way of thinking.
Thus, telling a chronically ill person to “shape up” (or even worse, the chronically ill person telling themselves to “shape up”), is not only an unnecessary guilt trip, it might actually be detrimental to health.
In allopathic medicine, medication is supposed to cure. It is called the “magic bullet.” One cause, one cure. Most chronic illness cannot be cured in this manner. The causes are a complex of genetic, environmental, immune system and, yes, lifestyle factors. Treatments are centered more around symptom control and daily living activities rather than disease eradication. Thus, the magic is gone.
So to push people away from medication is to render them in more pain, living with more fatigue and, perhaps, even expediting any debilitating and degenerative effects of the condition.
The message is simple. In the same way that an antibiotic is needed to make a person with an infection well, the medications available to treat a chronically ill person is needed to make life better for that person. There is no shame in fighting an infection and there is no shame in alleviating pain and fatigue.
There are, of course, lots of challenges to establishing an effective medicine regimen and keeping up with information can turn into a full-time job. There is, of course, a place for lifestyle changes, though most people’s lives get turned upside down by a chronic illness so the lifestyle has to change even without social pressure to do so. But stigmatizing medicine use helps no one and hurts many.
--Carl Wilkerson, MBA and Pattie Thomas, PhD
