n a raw crypt beneath Our Lady of the Conception of the Capuchins church in Rome stretches an exuberant display of skeletal remains. The piled skulls, fanned hip bones, and arched spines — remnants of centuries of Capuchin friars — bear a warning. Printed on a sign in three languages, it reads: “What you are now, we once were. What we are now, you shall be.”
I was studying abroad when I faced and promptly buried that grim exhortation in a lemon gelato. I was athletic, healthy, and 21. Surely I would never be them. My body was mine to control.
But two years later, just before my college graduation, odd symptoms began to surface: blurred vision, fatigue, an insatiable thirst. I hoped I might just need glasses, but the diagnosis came with the swift lance of a finger to measure the sugar in my blood: 900. “You know you have diabetes, don’t ya, dear?” the nurse said.
It was type 1, an incurable autoimmune disease. A packet I was handed in the hospital outlined how every part of me — nerves, heart, brain, skin, all — would be damaged by the excess blood sugar scraping through my vessels like microscopic shards of glass. I was told I would have to endlessly count carbohydrates, test my blood sugar, and inject insulin to prevent the disease’s serious complications and early death. I was told that this would be a lifelong effort.
“At least I don’t need glasses,” I joked to my then boyfriend, now husband. He was just starting to look at medical schools. I’d be his first patient.
“We’ll figure it out,” he said.
And we did. We learned how to tap bubbles out of insulin, how to calculate boluses of this vital hormone, how to count carbs, and more. Nearly 15 years later, it’s been more than 30,000 finger pricks and 1,700 site changes for my inserted insulin pump. It’s been waiting — for low blood sugars to rise, for high blood sugars to fall. It has been worry and strength. It has, by providence and by work, been otherwise good health so far.
I knew it would be hard. I did not know it would feel, sometimes, like sprinting in water. But what I never would have believed is how fiercely I have to work to get the chance to fight at all.
Even with good insurance, I’ve spent more hours untangling the inscrutable details of my policies over the years than I’d want to tally, just like so many others with chronic illnesses. I’ve come to understand medical versus pharmacy benefits, limitation overrides, essential health benefits. When my insurer denied coverage of the number of test strips I needed to maintain good control of my blood sugar, it took endless calls and a deep dive into the policy’s write-up to uncover what I was due. When my insulin pump tubing kept detaching in the middle of the night, I had to track down the vice president of quality assurance — unearthing his email from a posted company memo — to get it replaced.
Those of us with type 1 diabetes are lucky to be living now in a country where we have access to these medicines and technologies at all, of course. And it may seem trivial, this time spent on hold, asking for managers, delving into tiny text. We all do this sort of thing, after all, with various services and businesses — cellphone providers, airlines, cable companies. But there is something deeply galling about toiling for the right to stave off the loss of your limbs and eyesight. These hours are precious when you have a chronic disease that already takes too many of them.
I’m the first to admit that I am fortunate. Diabetes groups and message boards are full of stories of people who are denied basic care or the technologies to help them manage their disease, of drained bank accounts, of rationing. Even with the Affordable Care Act’s essential protections, nearly 1 in 4 chronically ill insured Americans are denied prescribed treatments. Insulin prices are soaring. People with diabetes spend more than $9,000 a year on caring for their disease.
I’ve met people with diabetes who are forced to string out their use of lifesaving insulin, to forgo glucose testing, to skip the treatments and screenings required to stay healthy. Some have died doing this.
“It’s disheartening to have an insurance company literally sabotage my efforts,” a friend with type 1 diabetes recently messaged me. “It’s horrible that they’ll cover an ambulance ride, eye injections, or kidney dialysis, but not the things that will help me avoid them.”
These restrictions are about the growing demands on an imperfect health care system. They are about money. But it seems they’re also about the boundary between the healthy and ill, the us and them, the blameworthy and faultless.
Scholars have shown that treating the chronically ill as “others” — deviant or different from the “normal population” — directly informs health care policy. During last year’s health care debate, from the frank denial of coverage for pre-existing conditions in the House’s version of the bill to the Senate’s back door into the same, the current of “othering” was there. Republican Rep. Mo Brooks of Alabama captured the zeitgeist when speaking on high-risk pools: “They will reduce the cost to those people who lead good lives,” he said.
That kind of vanity can infect even those charged with our care.
“It’s disheartening to have an insurance company literally sabotage my efforts. It’s horrible that they’ll cover an ambulance ride, eye injections, or kidney dialysis, but not the things that will help me avoid them.”
A few years ago, my pump, which provides round-the-clock insulin, failed without warning. The silent lack of the vital hormone had rapidly and unexpectedly driven me into diabetic ketoacidosis, a dangerous state in which the body burns fat for fuel, creating a wellspring of acid that rose into my chest, even while my blood sugar remained normal.
From an emergency room cot, I watched a mass of hazy figures form just beyond my bay. “Non-compliant diabetic,” a doctor said to his team, glancing at me from the hall.
My husband, a surgery resident by then, overheard as he was rushing in. “Not her fault,” he corrected. “She just needs help.”
Especially against a backdrop of relentless effort to stay healthy, the assumption of culpability can sting. But the issue is much more important than feelings, especially now. We’re on the cusp of a true revolution in diabetes, with the emergence of artificial pancreas systems that “close the loop” between an insulin pump and a glucose monitoring system. They represent our best shot at exponentially easier and longer lives.
In some ways, however, these miracle technologies make us more vulnerable than ever to how we are seen and what we are granted. Coverage restrictions — sometimes almost nonsensical ones — already abound for less costly technologies. More fundamentally, basic coverage of those with pre-existing conditions is once again threatened. Where does that leave us?
Health care is hugely complex, and addressing its shortcomings is a Herculean task. But in that effort, it seems stunningly myopic to trust that less care and more profit will mean that people with diabetes and other chronic illnesses will figure it out, somehow, on our own.
If we have to scrounge even harder for every ounce of our care, we will be more ill, more expensive, less productive, less alive. People with type 1 diabetes need a real cure. In the meantime, we need access first to insulin and second to transformative technologies without a fight.
I am grateful. I am hopeful. I am fearful. I remember the hubris: Those bones are them; this body is you. I know its self-protective power. Maybe you need to teeter on the edge between to know its lie.
Kylah Goodfellow Klinge is a biomedical communications consultant whose clients include diabetes treatment and research organizations.