Total Personal Health Care

According to the norms and definitions of medicine, I am ill. Nonetheless, I enjoy incredibly good health. I am supposedly an invalid, but I feel unashamedly fit. I am, in other words, a living paradox.

I can always console myself with the idea that it will not last, but this outrageously fortunate state of affairs has been going on now for a number of years without any signs of imminent catastrophe. Instead of making me vainly attempt to conform to the norm, this experience has led me to see things with a far more critical eye.

It all started at the age of 16, when I staggered into the regional hospital on the verge of diabetic ketoacidosis with a blood sugar level of more than eight grams per liter. I was officially registered as insulin-dependent. My parents’ world collapsed, and, overwhelmed with guilt, they began to see me only as a victim in need of protection, a fragile being who should henceforward be spared all suffering and all effort.

For my part, after my first insulin injections I was overjoyed to rediscover the life that had seemed to be seeping inexorably out of my body in the constant flow of urine I passed. I was happy and carefree to the point of feeling a kind of condescending pity towards the warning exhortations of the pediatrician who informed me I would have to inject insulin every day for the rest of my life.

On hearing this, I was neither surprised nor depressed. Could it be that I already sensed I would one day prove him wrong? Then the real diabetes began, the diabetes that I was going to have to carry with me and in front of other people day after day. And the first difficulties arose because I found this a very heavy burden to bear. It was not so much the restrictions themselves, because at first they just seemed like part of an interesting new game with complex rules and moves to be learned.

I still found it all very much a novelty. I enjoyed being able to give myself an injection in the correct way or scrupulously monitoring my blood sugar levels. But as these rituals became established, problems started to arise, particularly that of having to face other people as a person with diabetes. However, since it was the school vacations, I did not immediately have to face my classmates. Surrounded for those summer months almost exclusively by my family, I postponed the problem until later.

In fact, I was constructing an elaborate strategy to avoid confronting it at all. I had already decided not to appear any different from in previous years – either to those who already knew me or to those I would encounter in the future. Anyway, was I any different? Did the obligations that would henceforward weigh upon me, or the symptoms that might eventually affect me, make me any different from the 16-year-old student I had been only a few months earlier?

This was how I imprisoned myself for several years in a trap of deception –with all the disastrous medical consequences that followed. I had realized early on that if I wanted to be seen to live like everyone else, I would have to take some liberties with the strict rules of my treatment. I became obsessed with avoiding hypoglycemia (low blood sugar). I was not only afraid that it would reveal my diabetes to others, putting me at the mercy of their incomprehension, I was also terrified of the physical consequences themselves.

So when I checked my blood sugar levels, it was above all to ensure they did not fall too low, dropping to the fatal threshold at which hypoglycemia threatened. I reduced my doses of insulin accordingly, giving myself “comfort” injections that protected me from what I considered the greater danger, but that, of course, began driving me all the faster towards the catastrophe of hyperglycemia (high blood sugar) and what are discreetly referred to as its “complications.”

And if, in an attempt to preserve my feeling of freedom, I concealed what I was doing, it was above all from my doctor, particularly as he was very fastidious about the targets he set me. I therefore presented him with excellent records and very satisfactory results, which bore little relation to reality. This was how I became a “bad” patient, but one who would be willing to reform in the course of time. I did that alone, almost in spite of all the doctors. That should not necessarily be taken as a criticism of physicians as such, but it reflects the false, one-sided and damaging relationship that always developed between them and me.

I believe we each clung to our own particular point of view, each intent on sustaining his own particular goal, which he did not necessarily make entirely clear to the other. Convinced of the legitimacy of the principle of solicitude that guided his conduct, the doctor was concerned primarily with my good health, in other words, with doing everything in his power to keep me in the state that medical science told him was the norm. For a long time, my goal was to preserve a secret part of my freedom –in particular when my desires were impinged on by the doctor’s desire to do good.

That was before I understood that this freedom could only become real and legitimate if it were stated, openly demanded, and declared a principle in the face of the authority of the doctor whose limits it would define. This initiated a kind of struggle both against myself, finding the courage to consciously and responsibly insist on my own freedom and against my doctors, who were often slow to understand the advantage in being freed from their dutiful paternalism. In the course of this long and unfinished process of transforming my relationship with healers, I have learned a number of lessons that I would like to share, although I would not make any claims as to their absolute validity.

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Tagged with: Blood sugar, Diabetes, Diabetes mellitus, Endocrine Disorders, Health, Hypoglycemia, Pancreas

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September 14th, 2009 | Category: Diabetes | 1 Comment »
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