“He’s so fat. He’s going to get diabetes.” The person at the Deece table next to me talking about their overweight pet doesn’t know I’m right there, checking my Continuous Glucose Monitor (CGM) and bolusing for my breakfast.
In a tent full of becostumed revelry, elbows and shoulders brush against my infusion set; bodies press around me. I wake up with a bruise that only I’m aware of; it’s under my Omnipod.
In a group of friends, the conversation centers on the relationship between humans and technology; someone questions whether machines hooked to our bodies make us less human. My adhesive patches itch.
My CGM beeps like a fire alarm; heads meerkat up around me. It’s just my blood sugar.
Vignettes like these heighten my awareness of my Type 1 diabetes, but only some of them make others aware. And those that are visible often go unnoticed. People who do notice my diabetes keep these moments disjointed from the continuum of my experience, or else make their awareness of my disease known to me in an upsetting way. To them, these are isolated blips on the screen of their everyday experience, as distant and unimportant to them as a push notification—except that they’d do something about that, actually.
Diabetes is an invisible disease, and that’s a source of many of the frustrating phenomena that accompany living with it. Unless I’m actively messing with my insulin pump, testing my blood sugar, or treating hypoglycemia, it’s easy for everyone around me to forget that I have diabetes. Unlike what most people think of when they hear the term “disability,” there’s nothing visibly different about me compared to someone without a disability.
Sometimes, going into disease incognito mode is a good thing. When people do notice, they tend to ask questions—usually well-intentioned, but often abrasive or otherwise draining. “What’s that on your arm?” for instance, is a question I get almost every time my infusion set is visible. Also a common response: “My [insert relative here] has diabetes, so I get what you’re going through.” The human gesture of kindness (empathy) is, here, misplaced. While I appreciate people trying to make me feel accepted or normalized, it often feels like erasure of my experience, or an easy way to change the topic of conversation.
Increasingly, people see my pump and ask my take on insulin pricing. As a buzz-anecdote that easily illustrates what liberal Democrats think is wrong with the health care system and to demonstrate the evils of Big Pharma., young people who have died because of the cost of insulin could hardly be a more effective rhetorical device. While I am glad that skyrocketing insulin costs have been so widely discussed in such a visible venue as the Democratic presidential debates, I am not a rhetorical device.
The rising cost of insulin has recently gained visibility, but it’s just one way the health care system fails people with diabetes. Founder of Vassar’s chapter of the College Diabetes Network Erik Spangenberg ’21 shared with me, “For the past three months, I’ve called my insurance company every business day, sometimes two or three times in a single day. Each of these calls can range from 30 minutes to two hours. Don’t even get me started on the instrumental rendition of ‘California Dreamin’ they recycle when on hold.”
He continued, “It’s especially frustrating to know that better treatment exists, and there’s nothing I can do about it but deal with the inept system of health care today … It can begin to feel like not a single person cares about my life in the company whose job it is to insure my health.” Clearly, such an ongoing battle, even if it seems like a small annoyance, takes an emotional toll, as well as the practical one. “At the end of each call, I will feel hope, despair, rage or something in between,” Spangenberg described. “I have to remind myself that they are a company with each individual doing what they can, and that my situation could be much worse.”
True visibility doesn’t come from a condition’s use-value in furthering a given agenda. It comes from a true interest in listening to the life experiences of people with a condition, and being willing to advocate for those people—whether that’s in everyday life or as an insurance company representative.
In an emailed statement, Rachel Sipress ’21 distinguished between self-awareness and the awareness that others have about their disease—both, they shared, are tough in different ways. Commenting on the external factor, they explained, “I think a lot of the time, people forget that I have a disability. Forget that in almost all moments, it is in the back of my mind because with Type 1 diabetes, at all times, you have to be thinking about it just a bit. And people don’t see that, or even if they do see it a bit, they have difficulty comprehending what that actually means.” Even reading about what having Type 1 is like can’t transmit a full understanding of the experience and the burnout associated with so much work required just to stay alive.
And, as Spangenberg’s anecdote illustrates, sometimes even people whose job is to pay attention specifically to a person’s diabetes care fall short. But ultimately, his persistence paid off: “Those reading may be glad to know I was finally approved for a new continuous glucose monitor yesterday,” he said.
Sipress also spoke about the impact of the constant self-awareness that having Type 1 requires: “Because it is a condition that kind of exists on the inside, I have trouble remembering that I have to be more considerate about things. And that this condition is real and does have real consequences if I don’t treat it with respect. And because other people don’t really act as if I have a disability, it’s often pretty easy to forget that I have to be more considerate of my health than the average person.”
Even as a new CGM will hopefully improve Spangenberg’s management, emerging technology comes with its own set of issues surrounding visibility. “While this technology will make my diabetes more visible, it will also make me feel one step closer to a cure, a.k.a. ‘the norm.’”
Spangenberg, Sipress and I share certain aspects of our experiences with diabetes—among them, that we are comfortable discussing the condition and its effects on us publicly. But not everyone feels this way about their own experiences, and even when someone opens up once, that doesn’t mean they want to become your personal diabetes educator. This article and the broader project of Diabetes Awareness Month provide a way for those without diabetes to educate themselves, but avoid placing even greater responsibility on those with diabetes. We need more than political buzzwords and the attention we get when a loud beep goes off in class.