The Human Condition With Diabetes
By Sara Zarr
Navigating a diabetes diagnosis with the added challenges of daily life can be mentally taxing. Novelist Sara Zarr discusses her approach to dealing with the ups and downs of being human while managing her diabetes.
Imagine if diabetes were the only thing you had to deal with. Imagine it existed in isolation and your care was never complicated by anything else in your life. Imagine you always had enough time, energy, and mental bandwidth to support your self-care.
I don’t know about you, but I find that impossible to imagine as a person with diabetes.
Whether we’re diagnosed at 8 or 28 or 48, we don’t come to diabetes as a blank slate. We all deal with common stressors—work, school, family, and the day-to-day logistics of living life. Many of us have additional issues that stem from family dysfunction, our responsibilities to others, or challenging economic circumstances. On top of all that, we may also be dealing with mental health challenges like anxiety, depression, eating disorders, ADHD, or all of the above.
By the time I started my journey with type 1, I’d already successfully dealt with a number of mental health issues; I was raised in an alcoholic family and was on a lifelong path of understanding how to deal with the effects of that in my adulthood. I’d been diagnosed with anxiety and depression in the past but found self-care routines that worked to manage my symptoms. I’d been in a decades-long battle with my body image and weight, and felt I was finally breaking free from the negative effects of diet culture and disordered eating habits.
None of these things were “fixed,” mind you (and I’m not sure fixing is the goal or even possible), but I was doing a pretty good job at keeping these balls in the air as far as my mental health was concerned. When life tossed me another ball to juggle in the form of my diabetes diagnosis, I proceeded to drop them all.
My experience is far from unique.
We already know that people with diabetes are at increased risk for depression, anxiety, and eating disorders, and that people with depression are at an increased risk for type 2 diabetes.
It can be a bit of a chicken-and-egg problem to pull apart the cause-and-effect relationship among these things, especially for people diagnosed earlier in life. But many of us diagnosed in adulthood came with these existing mental health conditions.
Whatever the causes, one or any combination of these diagnoses and stressors can make care of our diabetes a challenge, whether that’s in the day-to-day of self-management or in getting our health care team involved.
“Someone who’s depressed and anxious just has lots of difficulties with management,” said Dr. Rick Henriksen, a family physician at Utah-based Kestrel Wellness. For these people, taking positive steps in diabetes self-management is “drastically different for them than for someone who isn’t depressed. I can tell a patient about the changes they can make, but it’s very difficult when they barely have the energy to get out of bed.”
I recently met a 21-year-old woman with type 1 diabetes as well as diagnosed ADHD and anxiety. She didn't want her name published, but she told me that she has been “afraid of [healthcare] appointments, especially when [diabetes] became difficult to manage when I was a teenager.”
Her care team helped with her ADHD diagnosis, which in turn improved her diabetes management. This success also helped mitigate the anxiety of going to appointments.
Fear of appointments was common among many of the people I talked to. I’ve had it myself, and it’s a real barrier to care. Not only might we bring existing mental health issues with us, but also negative experiences with healthcare providers from the past.
Henriksen recognizes this problem from a provider standpoint. “Patients are coming in with a range of complex issues and experiences,” he said.
He also acknowledges that the way the healthcare system works can be an issue.
In a traditional clinical setting, “there’s not enough time and that can increase stress and anxiety for the patient,” Henriksen said. “And if patients haven’t been heard, that’s going to play into their ability to open up in the future.”
My own “range of complex issues,” combined with some negative experiences with providers (from feeling unheard to being on the receiving end of medical weight bias that compromised my health), has definitely been a barrier for me.
Before my type 1 diagnosis, I could very happily go years without a medical appointment, and one of the hardest things for me to accept was that I could no longer avoid doctors. My world would now include regular interactions with a frustrating healthcare system and all its players.
The good news is that positive experiences are a great antidote for the bad ones. One of the people I spoke to told me that when he finally found the right medical team, it “improved my ability to feel comfortable relearning how to live my life.”
Another woman I met, Lizzy Seitz, 27, said she was lucky to have physicians who were “super active in making sure that I had mental health assistance when it came to dealing with diabetes as well as life in general.”
Ideally, health care professionals can help us deal with the acute needs of diabetes while also putting those needs in the context of the other issues we might also have. When we feel understood as whole, complex people rather than blank slates with only the word “diabetes” written on them, we’re much more likely to make and keep appointments, and act on the right kind of care advice.
For Henriksen, getting his patients in and engaged with their care is about small steps.
When he recognizes that people with anxiety and depression are becoming overwhelmed, he’ll say, “You know what? The goal is to take a shower every day and you’re going to do that for a week,” rather than trying to hit all facets of management.
“Once the patient can start getting a few wins, that snowballs into greater wins and can help pull people out of some of those issues,” he said. “Some things are much more difficult to deal with, obviously, and take more time. And sometimes you just learn to live with it.”
“Learning to live with it” doesn’t need to be a defeatist stance. For me, it means I stop seeing myself as a juggler who is succeeding only when I can keep all the balls in the air, and failing when I can’t. Instead, I pick up one and put the rest in a secure place where they’re not going to roll around.
Diabetes may be in the foreground – the main thing I’m focusing on in terms of my mental and physical health. Other times, childhood trauma comes up and I need to put diabetes on autopilot as much as possible and deal with that. If I’m stuck in an anxiety loop, it’s time to give myself a break from obsessing over numbers and be okay with “good enough” care, as long as it’s not jeopardizing my immediate health.
All people with diabetes come to diagnosis with the existing condition of being human in a complicated, stressful world. Many of us come with additional mental and emotional health challenges, which compound and are compounded by the specific stressors of living with diabetes.
Pulling together a care team that understands this is extremely helpful, but that’s not always in our control or capacity. We turn to partners and the online diabetes community to fill in the gaps. Writing about it and sharing my experience helps me. Psychotherapy certainly plays an important role for many, as do medications such as antidepressants and other treatments.
One thing I’ve learned about people with diabetes in the decade since I was first diagnosed is that we’re resourceful and resilient, and we want to thrive, and we fight for it. But we can’t be resourceful and resilient all of the time.
It’s normal to have bad days and breakdowns, and to need help. One of the men I spoke to for this article said whenever he finds himself struggling to ask for help, he reminds himself, “You cannot do this alone.”
I’ve personally benefited from talk therapy, journaling, and forays into antidepressants when self-care wasn’t cutting it. Sometimes I feel like my care and my life are on track–that I’m successfully keeping those balls in the air. Other times, I feel on the constant brink of a meltdown and that what diabetes asks of us is just too much. If I think too far into the future and imagine myself juggling all the balls until the end of time, I get overwhelmed.
Mantras like “one day at a time” and “keep it simple” that some of my loved ones have learned in 12-step groups work for diabetes, too. And they work for being human–a condition we’re all born with, that is different for each of us, and that doesn’t stop when we need a break. A lot like diabetes, actually. Maybe that’s the gift of it, that we live hour by hour with a real, tangible condition that’s also a metaphor for so many other things in life.