My Diabetes Care Is Not Gross
“It was not my wish to reflect badly upon my newspaper, colleagues, family or friends. Or, to become an internet pinata.” These were the words of South Florida Sun Sentinel Senior Columnist Doreen Christenson, who substituted her usual “Deals and Savings” beat for a foray into “Health,” responding to outcry from a recent Facebook post.
The post in question, in which Christenson recounts a man seated near her checking his blood sugar and injecting insulin for his meal, ends with: “I thought this was gross. What do you think?”
Well, Doreen, as a journalist and a person with type one diabetes, I have a responsibility to tell you that it’s not an “opinion” to find dosing insulin in public “gross.” And I know you hyperlinked a lot of sources in your apology article, but you didn’t tell us anything concrete about the profoundly negative impact your post and ignorant comments had. And you certainly didn’t give me the impression that you would like to sincerely recant your statement or your “opinion” on managing diabetes in public view.
But first, I need to tell you that I appreciate your effort to educate yourself, and your receptiveness to critique. And I want you to know that what I’m sharing here isn’t meant to be another “gut-wrenching” story of my “cruel” disease. It’s meant to be an exercise in empathy. I’m trying to understand you. I hope you’ll try to understand me.
As I’m in the habit of deeply digesting online discourse before I hop on the bandwagon and get enraged, let me say that I understand your initial thought when seeing a person bleed in public and inject themselves is probably something like, “That’s not very sanitary.” Perhaps if I didn’t rely on such injections to live, I might react that way too. But as I’ve written before and will likely write again, I’ve been living with type one diabetes since I was eight years old.
In response to outrage from people like me, your apology uses adjectives like “harmful” and “woefully uninformed” to describe your post, but these clinical words don’t encompass the deeply personal effect your so-called opinion has on me, my sister, and the many others who live with diabetes. I read your post a few days ago, after my sister shared a screenshot of it on Facebook, captioned with three eye-rolling emojis. So often, diabetes-related posts like yours come at me unexpectedly, because I have so many friends with type one. I read your post, digested it, became irritated and then moved on, slightly more self-conscious about the visible devices I use to mimic a healthy pancreas. Would a coworker watching me change my infusion site react that way? Would they call me gross?
You shared your apology article to Facebook with the caption “Forgive me.” I might be willing to, Doreen, because I don’t believe in cancel culture, and I generally don’t hold petty grudges. But I have to tell you—I am very, very tired.
You see, Doreen (I think we can be on a first name basis here), as you were posting your apology, I was cooking pasta with my roommate. This was a typical dinner; I’d just put the water on to boil, the broccoli side dish was about to be sautéed.
I pulled out my Personal Diabetes Manager (PDM), the “controller” of the two-piece OmniPod Insulin Management System that I’ve used for just over a decade (that’s, if we’re keeping track, half of my life) and my lancing device, the oh-so-offensive instrument I use to make a finger bleed, along with a canister of test strips. Like I always do, I put a strip into its slot in the bottom of my PDM, waited for the coding screen to confirm the right number, poked my finger, and placed a blood sample on the strip. It loaded. 192, a bit high for a fasting number. I was frustrated, but tried not to let one bad number (or a day of mostly high numbers) get me down. I inputted the estimate of carbs for my upcoming meal, and pressed the necessary number to confirm the delivery of my suggested meal-time dose, called a bolus. I put down my PDM, and went to the fridge to grab some dinner ingredients.
A very loud, continuous beep began issuing from my PDM. I figured my pod (a patch-like device adhered to the skin with a self-inserting plastic cannula to administer insulin) had an occluded cannula, meaning I’d need to change it. Instead, I walked back to my PDM, already annoyed, and read the error message: “PDM error. Contact Customer Support” and an ensuing list: a phone number, a reference number, a serial number.
My blood, which I already anxiously imagined becoming saturated with ketones, ran cold. My extremities went numb.
I told my roommate that I had to make a call. The very apologetic voice on the other end guided me through a manual reset which should have worked, but didn’t. I then was informed that my warranty had expired in May 2012. I estimate that no fewer than 20 apologies were issued in the course of our short call. No wonder yours seems less-than-effective, dulled to my ears from years of hollow apologies which do nothing to make my life any easier.
Luckily, my family has insurance and our out-of-pocket maximum had been reached earlier in the year (in part because I live with a condition that costs the U.S. healthcare system $237 billion annually, making it more expensive than heart disease, stroke or cancer), so I was able to tell the customer service representative to go ahead and overnight a replacement. Since it was Saturday, that replacement would not arrive until mail delivery on Monday.
This one completely random malfunction of my insulin pump, the latest in a long list of unpredictable and potentially catastrophic malfunctions, meant I spent my evening crying in front of a CVS pharmacist, having a quiet panic attack in their small waiting area and checking my credit card balances to see if I would even be able to pay the out-of-pocket cost for insulin. And it ultimately meant walking half a mile to a different CVS, because the first one didn’t have the insurance-preferred brand in stock.
It meant that, like the man you derided in your post, I would need to inject myself in public.
I was one of those kids you reference in your article. I put off my treatment because I was ashamed to inject myself in public, afraid of stares and comments from passersby, or the look of disgust turned my way from people at a nearby table. I risked bodily harm because of the vitriol and ignorance exuded by people who have absolutely no reference point for my lived experience.
I needed years of adjustment, years of seeking solidarity with a community of people who have a reference point, both online and in person through organizations like diabetes camp; years of being the punchline of insensitive jokes that told me I deserve my disease; bouts of burnout and near-misses with disaster, to overcome that feeling.
The following day, as I sat in the cafe of a museum I’d eagerly planned to visit, I prepared to test my blood sugar and inject myself with insulin. And I was suddenly nine years old, wanting to eat my food, go home and deal with the consequences later.
I’m not blaming you for that, let me be clear. You are not the one-person stigma engine of society. You are, however, a product of that ignorance. And you do not get to ask my forgiveness for that. You do not get to shift blame in your article toward “harassment” by the diabetes community.
As a collegiate journalist, I’ve been on the receiving end of online vitriol; I understand what it is like to have made very public mistakes. I understand that that’s not a good feeling for you. I know that everyone will be quick to forward the least charitable assessment of the situation, and to react accordingly. However, I struggle to look on this section of your apology with charity. I do not understand what drove you to swivel your apology into self-victimization.
In a contribution to Medium, freelance writer Marianne Litman airs her personal response to your apology article, writing, “She turns it onto those that she wronged and makes it about how they have wronged her … [I]f she received death threats those people should be ashamed. But taking 4 paragraphs in what is supposed to be an apology to a community of millions to turn yourself into the victim is really annoying.”
I’m empathetic to your plight, Doreen, I really am. I know you didn’t understand that what you were suggesting in your post (I assume you were raising hygienic concerns; that is my charitable read) would deeply anger so many people. My sister, who also has type one, summarized: “The whole thing was like walking up to another person, punching them in the gut and then being shocked that they hit you back.” Should the other person have engaged with you on your level by punching? Probably not. But are they justified? That depends who you ask.
One commenter on your post of the apology article wrote, “I’m glad its [sic] over for you.” Doreen, I sincerely hope your effort to rectify the damage you’ve done isn’t over. Because it isn’t for me.
If you would like to get involved in improving the lives of those with diabetes in the United States, urge your Congressperson to pass the Insulin Access for All Act, H.R.366.
1 thought on “My Diabetes Care Is Not Gross”
Hello! Thank you very much for your article; I also have T1D (although more recently so I don’t have a pump or anything) and I’ve only recently started to feel more comfortable about using a syringe/ pen in public. It’s upsetting to know that misinformation about the condition is still around, but I’m grateful that you brought it to attention here.