The Stamp of Compliance

If you're a type one, you've likely accumulated a litany of diagnoses over your lifetime. Hashimotos, celiac, lupus, the works. They pile on, accruing in your chart over the years. Maybe this bothers you, maybe it doesn't. There's constant debate about the power of labels and how one's diagnostic label can help or hurt them if they over-identify with it. But the more time I spend in the medical field, the more I notice a label that doesn't seem to yield any benefit: compliant. Or, for our purposes, non-compliant.

Over time, doctors need to monitor your diagnoses and how you are managing your health. But seeing non-compliant or history of non-compliance tacked onto a patient chart tends to create an image in a provider's mind before they even meet their patient. There is a level of judgement that inevitably occurs once your diagnostic labels include compliance issues. Much like words that we no longer use due to the negative connotation and derogatory nature they became so closely linked with, compliance is beginning to get a bit of a bad rep. Why? To start, let's look at the definition:

source: www.dictionary.com

Obeying. Yielding. Not exactly words I would appreciate being used towards me as a patient. "You must obey your diabetes regimen." I'm trying to live my best life, not surrender at battle in Winterfell. I've heard certain healthcare providers talk about a shift toward using the word adherence, which I personally think is better. The bottom line is, the word compliance has developed a stigma. To have such a strong label as a diagnostic tool on a patient's chart is a risky move. It becomes easy to say, "This patient is non-compliant. I better not get my hopes up. They're probably not doing what they're supposed to."

This label extends beyond diabetes - it applies to all chronic illnesses, whether it's ESRD, epilepsy, or asthma. It can be so easy to say, "Well, this patient's non-compliant. They don't want to care for themselves," when this may not be the case. There is another approach. When assessing patients and families I prefer to ask, "Are you able to take your medications/follow your diet/etc. as prescribed?" Asking from a place of non-judgement and not-knowing allows space for the patient to ask for help if they need it. Maybe they aren't taking their medication because their insurance doesn't cover it. Maybe they're struggling with an underlying anxiety or depression, or could just benefit from some educational counseling. Simply labeling someone as non-compliant and leaving it at that eliminates any possibility for improvement. And people living with chronic illness deserve a chance for improvement. Being stuck in a place where they are struggling to care for themselves doesn't have to be a place where they remain.

So what now? Other than adherence, what words would you prefer to have used, as a patient or as a provider? I am curious to know.

Sleep: A Fickle Friend

My relationship with sleep has always been odd. I love sleep. But when I was a child, I had night terrors. I always needed a night light, and I still can't sleep in total darkness. I'm also a violent sleeper. My friends who've shared rooms with me say I run in my sleep, kick in my sleep, throw things in my sleep...

I wake up and the room is a mess. My stuffed animals are everywhere. My blankets are askew. Bottom line is, my sleep has never been particularly restful.

As I adjust to adulting and having a full-time job, one of the things I've prioritized is trying to get as restful a night's sleep as possible. But the more time I spend trying to get a good night's sleep, the more I am reminded of an unpleasant truth: type 1 is not at all conducive to rest. And I am not alone in this. Other T1D's feel the same, as do their family members I'm sure. How does any parent of a T1D child get a full night's rest? My mom still doesn't sleep, and I'm 26 (sorry mom).

There's many parts of diabetes that interfere with sleep. To start, the equipment. Anyone with a pump knows what it's like to wake at 3am entangled in tubing (Podders excluded). There are times when I drift seamlessly between sleep and wake, just long enough to grab my pump, roll to the side, and place it so it's not wrapped around my waist. This may not be a lot of time awake, but it adds up.

Then there's the tech. CGMs can simultaneously help and interfere with sleep, depending on the person. On the one hand, the CGM is a great tool for waking those who don't feel their lows or highs. This is essential for getting a good night's sleep - because who can rest when they're worried about dropping low and not feeling it? Those who don't feel their lows and parents of young children can more than likely rest easily knowing their CGM is there for them. On the other hand, some CGMs are less accurate than others. False alarms ringing out in the night are incredibly frustrating. There's also the risk of over-checking and over-treating - seeing a downward/upward arrow when you roll over and glimpse at your graph, and giving an unneeded correction or laying awake with worry. Much like having a cell phone in the bed, the CGM is stimulation. It is a double-edged sword.

What else?
High BG - up all night to pee.
Low BG - up all night to eat. Followed by a rebound and a wave of nausea.
Bum pump site - have you ever had to change your site in the twilight hours while still half-asleep? Not fun.

Along with all of this comes the general anxiety of just being diabetic - and trying to sleep. Whether it's worrying about lows or highs, worrying about whether a correction will work and how you'll be when you wake up, or trying to remember if you've re-stocked your bedroom juice, diabetes is not a disease that plays nice with restful sleep. Because of this, I try to get into my bed early enough that I have more than enough time to get in eight hours - since I know 100% of the time in bed will likely not be spent sleeping.