The T1D-Warrior Label Oversimplifies Life with Type 1

A mother of a child with Type 1 describes the pitfalls of the restitution narrative in this opinion piece.



Opinion

If you or a loved one is living with diabetes, you’ve probably encountered the “warrior” character. The warrior character, like the “survivor” in breast cancer circles, is a hero, rather than a victim. He or she conquers the disease, battling high and low blood sugars and other challenges on a daily basis.

In the diabetes community, “T1D Warrior” blogs and t-shirts abound. Even medico-scientific communities have adopted the rhetoric. Dexcom Inc. calls users of its continuous glucose monitoring (CGM) technology “Dexcom Warriors.” According to the company’s website, Dexcom Warriors “not only take control of their diabetes through proper glucose management, they also live life to the fullest—without limitations.” The site profiles athletes, singers, actors, and other “adventure seekers” who have harnessed the technology to lead healthy and productive lives.

Dexcom Warrior profiles invariably follow the same chronology: first, an individual’s life is interrupted by diabetes – then, science and technology, coupled with a positive attitude, save the day. Take, for instance, Kris Freeman’s story. Kris dreamed of becoming an Olympic skier, and he was well on his way to achieving this dream before he was diagnosed with Type 1 diabetes. “When the doctors told Kris he’d have to stop skiing, he refused to give up on his goal. Instead, he began researching new tools to manage his diabetes better and discovered continuous glucose monitoring (CGM).” Thanks to this “epic discovery,” Kris went on to compete in the Olympics and to ski in over 200 races.

Stories like Kris’ can be inspiring. Such narratives portray individuals with diabetes as more than mere “sufferers,” and they encourage others with the disease to pursue their dreams. But when these stories proliferate in the absence of other storylines, persons with diabetes become conditioned to expect the disease to progress a certain way. They become conditioned to expect their experiences to conform to what sociologist and disability scholar Arthur Frank calls “the restitution narrative.” The restitution narrative unfolds as follows: “Yesterday, I was well. Today, I am sick. Tomorrow, I will be well again.”

In short, the restitution narrative is a narrative of overcoming. It is the one that the medical community likes to tell and the one that most people, including patients, like to hear. (“Who doesn’t want to become well again?”) But it’s not necessarily the most truthful representation of having a chronic illness. It doesn’t account for the ongoing struggles that people experience. It doesn’t give voice to the feelings of guilt, shame, despair, fear, and anger brought on by illness.

Regrettably, the restitution narrative dominates literature on diabetes. Recently, a number of medical historians have published accounts of the first individuals to receive insulin shortly after Frederick Banting discovered the serum in 1921. Problematically, these stories follow the same formula as those on Dexcom’s page. They first portray the person in a weakened state. (Many are on their deathbeds.) Then, these stories narrate the person’s miraculous return to health after receiving Banting’s life-saving extract. Nearly all of these historical accounts abruptly end with insulin’s discovery.

As the mother of a child with Type 1 diabetes, I find myself thinking, “Isn’t this person’s story of diabetes just beginning?” After all, my daughter’s diagnosis upended her life and ours. What was it like for these individuals to live with diabetes? How did they cope with the burdensome daily rituals, as well as with the long-term complications of the disease? What sorts of psychic conflicts did diabetes and its myriad complications provoke?

The restitution narrative is simply incompatible with diabetes because it can’t represent lifelong affliction. Furthermore, this storyline casts persons with diabetes as passive heroes. The real heroes (the active heroes) are the doctors, the scientists, and the life-saving technologies these experts provide. Early 20th century patients would not have lived if not for Banting’s discovery. Kris Freeman would not have achieved his Olympic dream if not for CGM technology.

The restitution narrative also tends to designate heroes along class lines. As Frank explains, “Restitution is increasingly a commodity that some can purchase and others cannot.” This was certainly the case in the 1920s when insulin was in short supply, and it remains true today. Even though insulin is widely available in the United States, other diabetes management apparatuses are not. Dexcom puts forth images of productivity and health, suggesting that any person with a CGM can become “good as new.” But in reality, so few persons with diabetes have access to this technology. Many insurance programs do not consider CGM essential to diabetes management, and most families cannot afford to pay for the system out-of-pocket. (Not to mention, many persons living with diabetes do not even have insurance and/or access to the specialists who prescribe such devices.)

It’s understandable why Dexcom pitches the restitution narrative—the company is trying to sell devices. (JDRF uses similar rhetoric to promote its research for a cure.) Perhaps, then, the burden is on others within the diabetes community to be discriminating consumers of these narratives and to express alternative storylines.

Many persons with diabetes and their caregivers are warriors who face life-or-death trials everyday. But they are wounded warriors, as diabetes exacts physical and psychological injuries that may never fully heal. For this reason, persons with diabetes and their caregivers ought to tell and listen to the stories of struggle, as well as the stories of triumph.

Do you have an idea you would like to write about for Insulin Nation? Send your pitch to submissions@insulinnation.com.

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Audrey Farley is a freelance writer and a lecturer at University of Maryland, College Park, where she earned a PhD in English. She is currently working on a historical novel about one of the first patients to receive insulin shortly after its discovery in 1921. Follow her on Twitter @AudreyCFarley