Redefining Difficult
Redefining Difficult
  • Renza Scibilia

I frequently refer to myself as ‘the difficult child’ – not so much in my family setting, because there I am clearly the perfect daughter (just ask my sister!). But professionally, I am sometimes difficult because I have been known to ask a lot of questions, and to think outside of the square. I am a risk taker.

And I would also be termed difficult in other settings.

According to a recent article on the health-related news blog, wbur’s CommonHealth, by Dr. Anna Reisman, an associate professor at the Yale School of Medicine, many physicians would consider me to be a “difficult patient,” a term that I really struggle to understand.

In the article, Dr. Reisman shared a recent conversation she had with some of her medical students who seemed to long for past days, where the physician was seen as the decision-maker and the patient was simply expected to comply with orders without question or comment. Patient questions are time consuming, schedule bending, and sometimes even exhausting. The medical students in Dr. Reisman’s class expressed a longing for “easy patients” who would accept and trust their expertise and opinions, and not be “difficult” by asking questions.

Living with diabetes can be difficult. It doesn’t behave how we would like it to or how we expect it to. It makes us frustrated and angry and sad and annoyed. It makes us want to try different things as we hope to get better results and see in-range numbers. And sometimes – often – we are the ones searching for a solution to an ever-changing disease, Googling, reading, researching, asking others for advice, and desperately wanting more, better, and different treatments that can make living with diabetes one thing and one thing only – easier.

When I ask questions or walk into a healthcare provider’s (HCP) office asking to try something new, I am not being difficult or questioning their expertise. Quite the opposite. I am there to solicit their expertise, to have a discussion about how I can improve my health, and couple what I know about my life with diabetes with their knowledge of medicine to try to crack the combination that leads to success, longevity, and less fear of eventualities and unknowns.

The only reason I manage my diabetes the way I do is because I researched, asked questions, and told my HCP it was what I wanted to do. I wasn’t being difficult when I first raised the idea of ditching multiple daily injections (MDI) for an insulin pump. Nor was I being difficult when I asked about continuous glucose monitoring (CGM). Or when I wanted to change to a different type of insulin.

I was looking for ways to make my diabetes less difficult – because diabetes is a difficult monster! It is not the person being difficult. It is the condition. And this clarification is important.

Diabetes is a condition that persists every moment of every day of my life. I cannot hide from it, ignore it, stop it, or replace it. Diabetes and the routines required to manage it are always there, forcing me to question everything. If I had my choice, I would question nothing, and enjoy every minute of it. With diabetes, I have to constantly make a decision about what comes next. Do I eat more food? Do I exercise? Do I go to sleep? Do I care? Do I really have to do this?

I get it, and agree with these medical students and physicians. The questions are absolutely time consuming, schedule bending, and exhausting. But the relationship that they have with their patients is as necessary as the relationship that I have with my diabetes, and the questions are required for both to prosper.

DOI: http://dx.doi.org/10.17125/plaid.2016.69

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