Beyond the Superhero Narrative: Bravery, Determination, and Resilience When You Have Diabetes
diaTribe’s Diane Scherer shares the ups and downs of living with type 1 diabetes for 40 years. Here’s how her personal experiences helped her overcome diabetes challenges and build up resiliency.
I have often seen the “People with diabetes are superheroes” meme come up in my many diabetes social media groups.
Whenever I see it, it makes me smile – I feel seen, validated, and part of a community of people going through the same thing. But then I started thinking about what it actually means more deeply.
More recently, the sentiment has started to annoy me. Life, and certainly life with diabetes, is not that simple. I no longer can just scroll past it and smile, grateful for the boost of encouragement it appears to offer.
Definitions guide life in so many ways. This is certainly the case when one is diagnosed with a chronic condition like diabetes that doesn't have an end, as opposed to one that might be cured.
After 40 years of living with type 1 diabetes, I’ve been thinking more about the messages in the superhero meme. Diabetes has shaped me, and while I like to say it doesn't define me, it partially does – for better and for worse. It carries a lot of dichotomy, which is very confusing.
I wonder if others also have conflicted feelings about the final sentence: “In other words, people with diabetes are superheroes without capes.” This line really hits me, and as time has passed, I have come to disagree with those words. Let me explain why.
Bravery (vs. cowardness)
Yes, diabetes has made me brave. I was brave when I gave myself my first injection at around 5 years old. How many kids with normal working pancreases can say they give themselves shots before learning to read?
Diabetes has made me brave when I am traveling alone in an airport. If I have a low blood sugar episode, I need to know what to do, how to do it, and what stranger nearby I can ask if I need assistance. Diabetes made me brave when I ran my first half-marathon while balancing the training and day-of needs. I can go on and on.
However, just as much as I am brave, there are many times I’ve felt like a coward. One example is the little voice in my head saying to start my own business. But, what if I can't afford health insurance? What if I become too busy or fail? A person with a normal working pancreas would be disappointed if they fail, but I feel like I have an extra layer of physical health connected to failing. How will each scenario affect my diabetes management?
So, sometimes I have to be practical about life and accept feeling a little cowardly when it comes to bigger dreams.
Determination (vs. hesitation)
I am confident that diabetes has made me determined. I’m determined to be the best employee I can to show I can accomplish as much as anyone else, and also ensure I have an income to maintain my health (and my health insurance).
I’m determined to do as much as humanly possible in one day to feel accomplished. I know that I’m goal-oriented no matter how I physically feel during the roller-coaster of CGM arrows, etc.
Yet, there are often times when I need to balance determination with hesitation. While I want to do it all, I can't. I have so many examples, but one is that people with a normal pancreas can run errands, go to work, watch their kid’s soccer practice, and then out to dinner with friends.
However, there have been many times when I’m driving, see myself trending low, and have to be safe and pull over. I’m humbled that an entire day can get off-track because of the human body: the balance of insulin vs. glucagon is not on auto-pilot for me.
I’m so grateful for the advances in continuous glucose monitors (CGM) and automated insulin delivery (AID) systems. I use an Omnipod DASH with a DIY loop algorithm. I use DIY informally to explain my tech, but recognize that open-source AID system is the best term to use.
According to sources and leaders in diabetes, using the term do-it-yourself (DIY) may make some users feel isolated. DIY doesn’t accurately characterize the fact that even the initial developers of open-source AID systems relied on others for help; with a user base of over 25,000 individuals, open-source AID is hardly a solo effort.
I recently faced determination vs. hesitation head-on with my diabetes technology. My DIY loop has saved my life in countless ways. But one day, what I’d been so sure about sort of failed me.
During an outpatient procedure (in a different town than my own home), my fasting numbers pre-anesthesia were flat, thanks to the loop. Two hours later, they rose to nearly 300. As much insulin as I was pushing – in addition to the 200%+ override I set – my numbers weren't coming down.
After calling the surgeon, I found out they’d given me a steroid during surgery. My DIY loop couldn't keep up with the steroid-related glucose increase and insulin resistance. At that point, I realized that sometimes tech can't do it all. Groggy, I sent my husband across the street to the pharmacy, got a package of syringes, and injected insulin to bring me down faster. Three hours later, it started to work.
Feeling exhausted and recovering from surgery away from home (plus having blood sugar in the upper 200s) I realized that diabetes and technology kicked my butt that day. I became so anxious that I would go into diabetic ketoacidosis (DKA) and not get home to my kids in time I called my “diabuddy” (more on that later) who lived nearby for mental support and asked where the closest hospital well-versed in diabetes was, just in case.
Even after 40 years and using the best technology, diabetes is a humbling disease. However, we always remain determined to figure out things one day, hour, and minute at a time.
Resiliency (vs. breaking)
Resiliency is so important. We get knocked down but we get up again. I want to always emulate this, but also yes, I often break down and cry. Why, I think, did this happen to me at age 3? How would my life be different if I didn't have diabetes? Gosh, I can count a million ways.
However, I vow to remain resilient in the face of personal adversity and when others do or say harmful things.
When I had my first insulin pump in the 1990s, it was clipped to my jean shorts. I was at the beach with some friends and one particular guy, who I liked. To my dismay, he asked if I was a drug dealer because I was wearing a beeper.
At that moment, I had a choice. I answered him in a mature way stating what I was wearing and then walked away. I broke down later in private and cried. But the experience taught me to be tough in front of other people. For me, resiliency will always prevail, because what’s the alternative?
Maturity (vs. immaturity)
I often wonder: did I grow up faster than others because I had to worry about diabetes? Or slower because I missed doing things that they could?
I look back and realize that I missed key moments in childhood that many kids probably experienced and grew from. Yes, I learned other things, like how to give myself injections and do quick math in my head to count carbs and determine a sliding scale correction ratio.
But, I did miss out on things like sleepover parties. When I got older, I missed out on a school trip to Washington, D.C., sleepaway camp, youth group conventions, and babysitting as a first job. These are all things that perhaps could have helped my maturity but I wasn't able to do.
Empathy and compassion (vs. selfishness)
Because of what I’ve been through, I truly believe that I am empathetic and compassionate to others with health conditions.
Due to my own challenges and strengths with diabetes, I consider myself a person who actively listens (probably why I wanted to pursue a master’s degree in social work). I pride myself on being empathetic 90% of the time.
But, then there are other times when I need to be selfish to protect my own physical and mental well-being. This reminds me of when I was breastfeeding (one of my three babies) and had a low come on, I had to put them down for fear of dropping them. Yes, it's worse to drop a baby, but it's an awful and selfish feeling to put my baby on the floor– and listen to them cry – while I took care of myself.
I recently shared this story with someone who turned it around for me, describing it as a way of protecting myself and my children, and I’m grateful for that viewpoint. Perhaps caring for another (compassion) and caring for myself (selfishness) aren't always opposites. Perhaps they can live alongside one another in certain situations.
Strength (vs. weakness)
More than anything, I want to be strong – physically and mentally – and show my strength to my kids.
I consider myself strong for the times my body recovered from DKA (I was so weak and scared of dying, it will always haunt me), from going through three pregnancies with type 1, for waking up and continuing my day on low sleep after nights when my levels are off and CGM keeps beeping.
I want my body to be strong so I have the energy for my mind to be strong. But some days I feel weaker than ever. Daily stressors and lack of energy will catch up with anyone, especially people with an autoimmune condition.
While I enjoy eating dinner out, drinking, and socializing, I’m mindful of the extra steps I need to take to ensure that what I eat, drink, and do contribute to energy and strength, not cause repercussions later on.
My thoughts on the ‘diabetes superheroes’ meme
While I appreciate the closing line of the superhero meme, I cringe at the term “superhero.” If you ask, I’m sure many people want to be a superhero with super strength or the ability to fly. But please, let's not pretend or insinuate that people want diabetes.
Yes, we do invisible work making hundreds of decisions every day, but that doesn't mean we are superheroes – we are doing what we have to, but don’t want to do.
So, when I scroll by feel-good graphics like this on well-meaning diabetes social media groups, I tell myself these few tips, in hopes they resonate. Memes don’t have the power to fix life’s challenges. Pause and think about what the meme is saying and how it relates to your life. What can you learn from it?
I try to do tangible and actionable things needed for my diabetes management. Pictures and words are important for the world to see. We are brave, resilient, mature, and more. It provides me hope and a positive attitude when I am scrolling on my phone half-asleep and grouchy from the day. However, we must go a step further.
For me, I want to keep my time in range high for many reasons. So my kids can see a strong mom, so I can see my grandchildren one day, so I can contribute to society, and so I’m healthy enough to retire and travel the world.
Thus, I pledge to not just scroll on social media and actively:
Read sources like diaTribe.
Speak with my healthcare provider in an empowered way.
Engage with trusted diabetes online communities to share tips.
Follow people who provide hope and inspiration (for example, people like Robin Arzon, a type 1 mom and Peloton instructor).
Always have a diabuddy (or many!). A diabuddy is someone you can call if you want to smile on a good day, cry on a bad one, or just exchange tips.
Seek out resources to create your own diabetes village. Inspiring memes and quotes are great, but let's do more. Let’s not define diabetes in a box with simple terms. Like most things in life, there’s a middle ground.
I try to emphasize the positive definitions while acknowledging the challenges and contradictions of living with diabetes. I urge myself and others to lean towards the positive definitions as this will provide more hope and support.
I hope you too will remember, even on the bad days, that you are brave, resilient, mature, strong, and determined. No one needs you to be a superhero, but if you do what you can to bring your best self to your family, loved ones, and the world, that will be more than enough.