If, as is very often the case, a patient does not “play along” and non-compliance becomes the specialist's constant nightmare, this is usually, in my opinion, because – sometimes unconsciously, sometimes even deliberately –the doctor makes the goal of “good health” (achieving balanced and normal blood sugar levels in the case of a person with diabetes) the patient's duty.
As far as I am concerned, this is a strategic error and a highly questionable position to take. Of course, the patient's good health is the goal that the doctor is dutybound to pursue. It is equally true that the patient, by consulting the doctor, enters into an unspoken agreement with the physician that implies a certain respect for the recommended treatment.
In the case of a patient with a chronic condition and the long-term treatment involved, this is an agreement of a rather special kind. Nonetheless, the duty to heal, however legitimate, does not give the doctor the right to subvert the patient's will, thereby denying the very thing that makes him or her human: the ability to choose. Real choice does not exist unless there is an alternative; it entails making a positive decision between satisfying one desire and not another.
I can want a cigarette for the pleasure it gives me, just as I can wish to have healthy lungs for the benefits they offer. It seems to me that I would be much more likely to opt for the healthy lungs if they were presented to me not as an obligation, but as one of a number of possibilities open to me. To present them as the only alternative, is to make them undesirable for all eternity.
By the same token, presenting normoglycemia (normal blood sugar) to a person with diabetes as an imperative precludes the very possibility that it might be desirable. And yet it is perfectly desirable, given the benefits it brings. It can even present itself as the preferable option as it opens the door to the possible fulfillment of far more wishes than the other, eventually fatal, alternative.
Yet to say that the preferable is an imperative is to presume that patients are incapable of recognizing it as such and of choosing it of their own accord. Fear that patients will make the wrong choice or lack of confidence in patients' wisdom leads doctors to hijack patients'free will, deceiving them into thinking that the preferable is an imperative. This is, I believe, what is meant by the word “compliance.”
Doctors thereby risk laying themselves open to what they most fear: their denial of choice transforms the wishes of the patient into rejection and withdrawal. At the same time, a gradual metamorphosis also occurred in my relationship with my condition. Today, I can openly acknowledge my diabetes and its consequences and actually accept them to the point of finding them desirable – after all, they are part of what made me what I am.
However, this was certainly not always the case. Initially, there was rejection –total, radical, monolithic. This rejection was so unshakeable that it could take on the polished and deceptive appearance of a courageous “acceptance of my fate.” But what exactly was I rejecting? The rigors of the treatment? The harsh reality of the likely “complications”? The unfairness of the condition? In fact, it was none of these.
Illness as personal failure? What I was rejecting was not so much the diabetes as such, although it is extremely difficult to accept in its reality, but how people would see me from the moment I confessed to having diabetes. What unsettled me was the untroubled and thoughtless contempt that is felt for the sick. All too often, the patient is unwittingly reduced to a pathology, with references constantly being made to his or her condition, as if it were a fault, a failure.
If a person's blood sugar levels are “bad,” despite his or her care in following treatment, it is still inevitably his or her own fault. It is well known that blood sugar levels can sometimes rise suddenly, for reasons that are not fully understood. However, people with diabetes are often convinced that the unknown causes of these changes depend on that part of themselves that has still not accepted their condition. Even if they are not guilty by intent, they are guilty on an unconscious level.
This is almost worse, since it is a sign of essential badness. I believe that a normative conception of health creates a kind of “scapegoat effect”: the chronic patient commits the crime of being unable to conform to the norm for any length of time. This applies not only to medical norms, but also to social norms, which tend to react in a similar way. Diabetes is a “fatal flaw,” which is partly determined by genetic factors and thus a humiliating, definitive and transmissible quality.
Is it wise to marry a person with diabetes? Can an employer rely on someone with this condition? Good health is by no means only propagated as an imperative by doctors; advertising and the media have made it a dictate of the frenzied consumption that today takes the place of citizenship. It goes without saying that the postmodern man or woman is healthy, or must at least appear to be so. Going beyond this critique of social perceptions of illness, I also had to recognize that the contemptuous attitude towards me as a sick person, which I had attributed to others, was in fact my own. The fear of what others think is often initially a projection of the negative feelings one has about oneself.
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