When the Caregiver of a Child with Type 1 is Ill

When I tell people that my seven-year-old daughter has diabetes, they often respond by expressing sympathy that such a young child has to receive shots and prick her fingers on a daily basis. “I can’t imagine! All those needles! The poor thing.” Then they say what a shame it is that she can’t enjoy sweets like other children.

I know these people mean well, but I can’t help but become frustrated by their assumption that sharp objects and a sugar-free diet constitute the crux of the disease. In reality, people with diabetes, and their caregivers, face much greater psychological and emotional burdens.

This is largely because managing the disease is a full-time job. Diabetes requires meticulous counting of every single gram of carbohydrate in a meal, while also factoring in exercise and other variables. It requires careful monitoring of blood sugar at every moment of the day and night to mitigate the risk of seizure, coma—even death. Such constant vigilance is exhausting.

About six months after my daughter’s diagnosis, I developed chronic migraines. It started with a single headache on a particularly hot day – I suddenly felt woozy and tired, as if I had consumed a few glasses of wine. My vision was blurred, and I had sea legs. An hour later, a throbbing pain consumed the back of my skull. This happened again a week later, and then again, and again, until suddenly it was happening every day.

A neurologist diagnosed me with atypical migraine, gave me a prescription for an anticonvulsant drug used to treat epilepsy, and advised me to “not stress” about work or family matters.

But things only got worse. I began to wake up in a stuporous daze, which would last for hours—sometimes, all day. I experienced other symptoms as well: poor concentration, forgetfulness, irritability, dizziness, vertigo, and lethargy.

Two years later, my symptoms are somewhat better controlled. I have found that certain dietary restrictions and prescription drugs can reduce the intensity and duration of migraine symptoms. Transitioning to a work-from-home job has also helped. But I still experience symptoms on a daily basis. And when I do, I want nothing more than to retreat to a dark, silent room.

Only, such a retreat isn’t possible, since I’m the primary caregiver for my diabetic child. No matter how dizzy I feel, I still have to weigh and measure her food. No matter how severe the brain fog, I still have to remember to pack each necessity: fast-acting sugar, insulin, test strips, meter, etc. I know that forgetting just one of these items could lead to serious complications.

No matter how tired or withdrawn I feel, I have to be on the mark in case her blood sugar drops too low or climbs too rapidly. Even when she is at school, I am still on the clock, and I communicate with the school nurse throughout the day.

Perhaps the greatest difficulty is being an endless vessel of emotional giving. When my child is crying herself to sleep because she “hates diabetes,” I can’t exactly leave the room to nurse a headache. I have to comfort her, even though I, too, am angry and scared about her diabetes.

My spouse very willingly shares these burdens. He comes home from work with his sleeves rolled up. I let him take over even though he has his own share of serious health problems, which I suspect are also attributable to the onerous demands of diabetes.

It’s a precarious position, both needing and giving care. In fact, this phenomenon has recently gained attention in the healthcare profession, as doctors, nurses, and other medical providers increasingly report that their own mental and physical well-being have deteriorated under the demands of the job. A Sun Magazine piece about the crisis asks, “Who Will Heal the Healers?” What happens when caregivers, too, become ill? Alternatively, what happens when someone who is already ill becomes responsible for the well-being of another?

I suspect that many people are doubly touched by chronic illness, both needing and providing care. Not to mention, many chronically ill people routinely render other kinds of care; my mother-in-law, for instance, raised two boys while managing her own T1D. How do individuals cope with these conflicting responsibilities?

I have greatly benefitted from the “reading cure,” otherwise known as bibliotherapy. Stories simultaneously offer distraction and perspective, both of which the patient-caregiver needs. They allow readers to inhabit another world, thereby escaping their own pain. As D.H. Lawrence puts it, “One sheds one’s sickness in books.” At the same time, readers become more attuned to others’ experiences through stories. In moving beyond themselves, readers become vulnerable to the pain of others.

The truth is, most everyone is preoccupied by their own afflictions. We are all in some sort of pain, though the kind and degree may vary. And this pain renders the cries of other living beings faint. But when we read stories—when we choose to listen to others’ cries—these cries become a little clearer.

These past two years, I have found patient narratives to be especially therapeutic, because these stories affect me in contradictory ways. Take, for instance, Justice Sonia Sotomayor’s memoir, My Beloved World, which recounts her life following a childhood diabetes diagnosis. Sotomayor poignantly describes what it feels like to live with a chronic illness. But she also explains how her chronic illness was confounded by other hardships, such as growing up in a poor, single-parent household.

In comparison, my own family’s experience with chronic illness has been more fortunate. My daughter has never been without an abundance of advanced-technology supplies, nourishing meals, and other amenities. I have never been without access to great medical care and two steady incomes, despite how debilitating my condition can be. And neither of us will ever know what it feels like to be triply marginalized by illness, economic status, and race. Nor will we know what it feels like to experience chronic illness as a person of color, or as an impoverished person. Illness narratives like Sotomayor’s memoir both decenter and reaffirm my own experiences. They help me to make meaning while also obscuring the world as I know it.

Perhaps I also favor such narratives because they acknowledge that disease is curiously multidimensional. Illness—especially chronic illness—is rotten, of course; but it can also contain wonders, such as the virtue of mindfulness. Illness often encourages people to appreciate the moment and not take time nor other blessings for granted. Sotomayor suggests this very idea when she explains how diabetes inspired her to seize the day: “I probably wasn’t going to live as long as most people, I figured. So I couldn’t afford to waste time.”

Of course, reading is not going to “cure” diabetes or chronic migraine. But it has helped me to navigate my way through the kingdom of the sick. I hope that my daughter, too, discovers such signposts. I hope that she finds comfort, strength, wisdom, challenge, and curiosity in stories. And I hope that in stories she finds her own voice while also remembering to listen carefully for others.

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Audrey Farley is a former editor of Insulin Nation.

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