“Non-compliant”

Why would someone choose to kill themselves in one of the slowest and most painful ways imaginable?

This isn’t a hypothetical posed for thought-experimentation. Nor is this hyperbolic. This something millions of people are doing every day. It is something I have attempted myself.  

Diabetics are constantly made to feel guilt and shame for their condition by a society with a very limited understanding of the diseases (yes, plural). Contributing factors to developing and controlling any type of diabetes are far more complex than weight and “lifestyle choices.” In type1 – the type I have – weight, diet, and exercise are entirely unrelated to the development of the disease, which is autoimmune in nature. In type2, weight and diet often are contributing factors, but they aren’t always factors. And when they are, they are but two of a multitude.

Yet the media gorges us on nonstop, nigh-fetishistic coverage of diabetes in the context of the Obesity Epidemic, sugary drinks, and fast food, all bluntly illustrated by seemingly requisite videos of fat people from the neck down or behind – as if this somehow makes the sideshow ogling of their bodies okay. And because diabetes is associated in the public’s minds with fat, and because fat-shaming is socially acceptable, diabetes-shaming tags along for the ride.

Imagine the psychological consequences of having a chronic illness that is nearly impossible to perfectly control – an illness you know could result in vision loss, nerve damage, loss of limbs, kidney failure, and eventually death – and having society blame, shame, and mock you for it. Imagine nearly dying from a hypoglycemic event, treating the low blood sugar by forcing down candy until you feel ready to vomit, and later entering the hashtag #diabetes on Twitter or Instagram only to be inundated with people’s artfully composed indulgences of oversized ice-creams and greasy burgers. Imagine working tirelessly but fruitlessly to control a stubborn, hormone-induced high blood sugar, and then hearing a character on TV make a joke about “fatties” on insulin pumps eating cheesecake.

Now imagine having to face the same judgemental attitude from the doctors who are supposed to take care of you.

If your diabetic patient – type1, 2, MODY, whatever – is failing to control their blood sugar levels because of behaviors like: 

• Not testing and correcting their blood glucose properly

• Not following recommended diet and exercise plans, or

• Not taking their medications as prescribed,

then why do you think that might be? What are the possible reasons? Let’s think about it…

1. They don’t fully understand how to manage their diabetes. If so, whose responsibility is it to educate patients and direct them to proper resources? Their medical team’s.

2. They don’t fully understand the consequences of not properly managing their diabetes. If so, whose responsibility is it to ensure patients understand their medical condition and the potential complications? Their medical team’s. 

3. They fully understand both how to manage their diabetes and the necessity for good control, and therefore are in a position to be responsible for themselves, yet are engaging in behaviors that result in poor control. If so, what are the possible causes of these behaviors? Again, let’s think about it…
a. They want to control their diabetes but are unable to for financial reasons; anecdotally, my treatment plan for type1 diabetes costs over $25,000 a year without insurance, and $400 a month with insurance. Further, healthy diets are more expensive to maintain (when valued both in direct cost and cost of time invested), poor people don’t have as much access to either the time or space to get sufficient exercise, etc.

b. They want to control their diabetes but are unable to due to psychological reasons: according to a systematic review published in 2012 by the NIH, “The prevalence rate of depression is more than three-times higher in people with type 1 diabetes (12%, range 5.8-43.3% vs. 3.2%, range 2.7-11.4%) and nearly twice as high in people with type 2 diabetes (19.1%, range 6.5-33% vs. 10.7%, range 3.8-19.4%) compared to those without,” and while the rate of diagnosable eating disorder remains unclear, most studies suggest it is higher, sometimes vastly so, in diabetics than in the general population. Recent studies show that insulin has a direct effect on dopamine, suggesting that it is not only the stress of the disease contributing to patients’ depression, but a direct biochemical mechanism.

Proper control of my type1 diabetes means I must be motivated to check blood glucose 8-20 times daily, correct for highs, analyze and account for all meals and snacks I consume, account for all exercise, make scheduled doctor visits, and even wake up in the middle of the night to test. Imagine finding the motivation to do that while clinically depressed or while struggling with an eating disorder.

c. They do not want to control their diabetes. Here I would refer back to b. If a patient fully comprehends the painful and eventually fatal consequences of not properly maintaining control of their diabetes, and is choosing not to do so, this is a clear sign of a mental health issue: depression, delusion, Eating Disorder, etc.

I have nonjudgemental doctors, but I have not always been so lucky in the past. For years physician after physician scolded me for my highs, but never asked me why I wasn’t controlling my diabetes. Why I couldn’t. Instead they would berate me, to the point that I’d break down in tears after every appointment. 

I eventually became so fearful of doctors’ disapproval and remonstrations that I just stopped going. 

Then I met my current endocrinologist. By the simple act of treating my struggle to control my blood sugar as a series of obstacles I could face and overcome rather than as flaws in my character, he helped me bring my A1C from 13 to 7.5, and made me feel for the first time since I lost control six years ago that I can regain it. That I can get to 6.5. Or 6. And that I can maintain it.

The term “non-compliant” has no place in diabetes care. As I said in a previous piece, we are not parolees. We’re not off snorting sugar like blow to get high. The highs and lows of diabetes are a physical and psychological burden that cannot be ignored, and neither can they be shouldered all alone all the time. As diabetics we spend every moment of every day fighting our own bodies to stay alive, and what’s more, fighting the ridicule and judgement of an ignorant and unsympathetic society. Is it any wonder we sometimes collapse under the weight? 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s