Having Shame and Diabetes

It’s no secret–shame is a pillar of Asian culture. One of the consequences of that is we don’t talk about issues. We don’t air out our dirty laundry (which is a particularly funny saying in this case because the OG Asians will always only air dry their laundry for the sake of frugality) because we don’t want our “model minority” image to be tarnished by the challenges that we face.

One of those challenges is health. Growing up, I was instructed that I didn’t need to tell people that I had diabetes. They had no business knowing it, and I had no business sharing it. On the rare occasion that my parents had to explain to relatives why they absolutely could not give me candy, they hesitantly and tersely said, “Oh, she has diabetes”. The swiftness and abashment with which they said that every time was noticeable and sometimes uncomfortable—and I started discerning this from an early age. They were ashamed.

The coupling of them saying I didn’t need to tell people and of the way that I observed them telling people led me to believe that having diabetes was something to be ashamed of. More importantly, it led me to feel ashamed about having diabetes.

For most of my childhood, I felt like I was keeping a secret.

I was certain that the other kids could tell there was something different about me, but I certainly couldn’t tell them why. But sometimes the differences were obvious: I couldn’t go on field trips without my mother joining every time, I had to go to the nurse’s office every day during lunch, I never ate lunch with them. Every day, I had lunch in the nurse’s office at the table in the room with the cots. Every time the door opened, I looked up from my lunchbox like a deer in headlights and hoped it wasn’t someone I knew. When it was inevitably someone I knew, I hoped they wouldn’t ask me why I was eating in there.

Outside of the nurse’s office, when they asked why I couldn’t have a slice of the birthday cake, I didn’t know what to say. So I just went ahead and had cake. And then when I went home and tested a high blood sugar, I was shamed for sneaking sweets. This was a vicious cycle of shame that I perpetuated within my own head because I felt I couldn’t share my challenge with those around me.

In fourth grade, a girl in my class walked into the nurse’s office and spotted me while I was eating lunch. She was a curious individual, so naturally she asked me why I was there. I couldn’t dodge the question, and I couldn’t lie. So I swiftly and abashedly told her, in the same manner that my parents told relatives, “I have diabetes.” Immediately, my face flushed with embarrassment and shame. After the longest second ever, she excitedly replied, “Oh… My dad has it, too!” As she continued on about the pills that her dad had to take and about him pricking his fingers, I was astonished by her lack of a negative reaction. She didn’t look at me differently, she didn’t judge me, and most importantly, she didn’t shame me.

Although that was a distinctly powerful moment for me, it still took years before I no longer felt ashamed about having diabetes. It was only in the past several years, after having had the disease for almost two decades, that I realized that it is important for those around me to know that I have diabetes. If anything ever happened, they need to understand why and what to do.

Several months ago, I went on a first date with somebody, and the first topic of conversation was diabetes since I told him I was running late because my blood sugar kept being low. Like many people I encounter, he didn’t know much about diabetes, but he has friends who have it. In the next few encounters with this person, I brought up in real time every time that my blood sugar was stubbornly high or low. He commented that I sure talk about diabetes a lot, unlike his friends. He said that I make it such a thing, whereas they don’t make any deal—much less a big deal—out of it, as though they don’t have it. Instantly, I felt… guilty… for talking about diabetes, as though I had been burdening him by talking about my health. I started to think back to how my parents may have felt about telling relatives about this. Then I felt ashamed for roping somebody into an issue that isn’t theirs to worry about.

A few more encounters later, as l was treating my low with some fruit snacks, he commented that he didn’t understand why I didn’t have good control over my diabetes, when all his diabetic friends manage without trouble. Instantly, I had a very quick moment of shame as I thought to myself, “He’s right. Why don’t I have good control of this?” But then I gave myself another few moments to think about what he had just said. And I thought about the conversations I’d had in the past several months with other diabetics.

I suddenly felt deeply offended. Trying to not be defensive, I took the next few minutes to explain to him the nuances of such a complex disease. But he simply brushed it off. Obviously, encounters have since ceased. I couldn’t believe that he had tried to shame me about my disease—and worse, that I had let him make me feel ashamed.

It was only in the past year, after having had diabetes for 25 years, that I realized that there is nothing to be ashamed of. There is no shame in checking my blood sugar at the table, showing my robot parts (i.e. exposing my pump and CGM sites), or talking about my rollercoaster blood sugar days. There is no shame in taking care of myself. And there is absolutely no shame in having diabetes—Asian or not.