Guilt, shame, and fear are what I think of as the patient emotional trifecta. Shame is the stigma that often comes with our conditions. Fear is the constant state of wondering when the next shoe will drop and what your future will look like as your condition progresses. But the guilt. The guilt is more complicated.
Back when I was diagnosed, fear was a common motivator applied to patients to keep us on our recommended regimen, whether that regimen fit us or not. But even without using fear as a tool, there is a higher level of awareness of what could happen if we don’t stick closely to the “right” treatment plans. If we step off the prescribed path and we get worse, we tend to tie our worsening symptoms directly to our “misbehavior.”
I was a noncompliant (the newer, less accusatory term is non-adherent, though I am not sure I buy in to the idea that it’s a lighter burden) diabetic for six years in my teens, and I have always carried a heavy burden of guilt because of the complications I developed. They are all conditions that usually develop after a lot longer than I had been diabetic, or at least that’s how it felt every time a medical professional shook their head in sympathy and said that I was too young to be dealing with neuropathy, retinopathy, or one of the others.
The logical inference was that I had done it to myself by not following the plan set out for me.
In all these years, I have never believed otherwise. I have learned to live with it, but I have also never done any research to confirm my assumptions.
A couple of weeks ago, I had a conversation with one of my core clinicians, and it came up.
His response was quick. It’s not my fault. I didn’t do anything to contract diabetes. And all teenagers rebel. When you’re that young, envisioning your long life is nearly impossible, especially with people in your ear telling you that you are going to die of a stroke before you’re 20.
Of course, I’d had this discussion with my therapist, but that’s kind of like when your parents tell you you’re pretty. It’s lovely, but you’re their kid. That’s what they are supposed to say. It’s hard to believe until someone who isn’t obligated tells you – your first date or even a stranger when you’re buying clothes. (Someone passing by once told me I was stunning when I was trying on formal dresses. It was close to 30 years ago and I still remember.)
I also think it took time and perspective for me to allow a loosening of the death grip I usually have on self-criticism. Because who doesn’t take every chance to beat themselves up for perceived shortcomings? It goes hand-in-hand with my talent for subtle self-destruction.
But hearing it from him, someone who has the weight of medical authority and who I know well and trust was enough to loosen my psychological fingers a bit. Maybe even enough to look up how long it takes to develop complications. Johns Hopkins says my first complication can develop in the first “several” years after diagnosis, but also it can happen sooner. Six counts as several, right?
The truth is, I can’t actually know. Correlation is not causality. After all, I suspect I was diabetic for 18 months before I was diagnosed. So, were my nerves already in peril when I was diagnosed? As far as I know, there weren’t tests available back then to track the course of the degeneration of my nerve endings. There were no symptoms, either, so no insurance company would have approved expensive tests to track a negative.
Now, I hate loose ends. I won’t start a book series unless it’s finished, and I rant if I make a mistake. But for these particular loose ends, since there is no definitive way to say how I got here, why not let myself off the hook?