When diagnosed with type 1 diabetes at the age of 8 years, Nicholas Argento, MD, remembers watching a nurse show his mother how to boil a glass syringe. The needle would have to be sharpened just like a kitchen knife and then be used to inject insulin every day for 6 months after being sterilized in boiling water daily. Things were different in the 1960s: Finger sticks had not been developed yet, and the only way to monitor blood glucose was urine testing.
"It was so primitive that you basically were flying blind," Argento says. "At that time, the outlook for somebody who had type 1 diabetes was pretty grim."
Now an endocrinologist at Maryland Endocrine, Columbia, Maryland, Argento finds himself at both ends of the needle as a physician living with type 1 diabetes. "You have an insight level that a person who doesn't live with this couldn't possibly have," Argento notes.
In the United States, about 1.9 million people live with type 1 diabetes, including more than 200,000 children, according to the American Diabetes Association. The life-changing diagnosis has motivated a number of medical professionals to devote their careers to helping others with the condition.
Dealing with the daily highs and lows of type 1 diabetes themselves gives this group a keen awareness of their patients' struggles with the chronic illness and a deeper empathy for when things go wrong.
Helping Others With the Same Struggles
The exact number of endocrinologists, or even just physicians, caring for patients with type 1 diabetes who also have the condition themselves is unknown.
Thomas Grace, MD, a primary care physician and diabetologist at the Blanchard Valley Diabetes Center, Findlay, Ohio, estimates that the proportion is much higher than the number of people with type 1 diabetes in the general population. "Having the disease and going through the struggles with it, I think a lot of people find themselves wanting to help others with it," Grace says.
Laura Nally, MD, a pediatric endocrinologist at Yale School of Medicine, New Haven, Connecticut, says she felt motivated to pursue endocrinology after two of her aunts passed away from diabetes complications. "That event really made me decide that I wanted to go into the field to help children with type 1 diabetes," she notes.
And growing up, Rayhan Lal, MD, an endocrinologist at Stanford Medicine in Palo Alto, California, never wanted to do anything diabetes related. "I was a huge nerd," he shares. "I wanted to be an engineer." But after both of his younger siblings were diagnosed with type 1 diabetes, he changed gears and moved into medicine.
His own experience with the condition and the emotional toll of having loved ones affected by the disease strengthens his relationship with patients and their families. "The diabetes is a shared link that we can connect on," Lal adds. "I try to use that connectedness to help change behaviors toward the positive."
A 24/7 Job
Being a clinician living with type 1 diabetes is almost like having two full-time jobs, Nally says. Along with helping their patients, endocrinologists with type 1 diabetes have the added burden of managing their own condition.
"I still have to make sure my blood sugars are stable when I'm seeing patients," Nally says. "[I have to make] sure that I have all my supplies with me for backup in case the technology fails. I always have to be prepared for anything that can happen with type 1."
When she was pregnant, her efforts to control her condition became even harder. "It was like getting diagnosed all over again," Nally shares. "Trying to make sure my blood sugars were very tightly controlled was very challenging."
Compared with people who don't have diabetes, there's always going to be more stress. "Type 1 affects pretty much every aspect of your life," Argento notes. "It's something you have to pay attention to 24/7, 365 [days a year] or you're going to fail it."
But having the disease doesn't make his job any more difficult. "Actually, having the disease is the reason I got into what I'm doing," Argento adds. "It makes my job more enjoyable trying to help people that have the same illness."
Empathizing With the Struggle
Living with type 1 diabetes is a different experience for everyone. Nally says growing up with type 1 diabetes as well as having a father and other family members with type 1 diabetes helped her recognize that everyone faced different challenges with the chronic condition.
For her, adolescence was the toughest time. "Adolescents want more autonomy but also don't necessarily want to do all of the diabetes things that they need to do in order to manage their blood sugar," she says.
When she's counseling teenage patients and their families, she recalls some of her own struggles at that age. "I would eat candy every day for lunch as my way of rebelling against having diabetes," Nally says. "I also relay times when I would fight with my family about diabetes."
She says those experiences are normal for adolescents and that drawing from her own life helps families understand it's a common part of the coping process.
The age of the patient at diagnosis also shapes the guidance that they will need. Grace feels lucky to have been diagnosed at a very young age because the routines he developed as a child carried into adulthood. "It's much more difficult for adults to break out of some of their habits," he notes.
Grace describes the patients referred to him as "more challenging": those who have had diabetes for a longer period of time and have been unable to control it well. Because he empathizes with his patients' daily struggles, he focuses on helping them set expectations.
"No one's perfect. Even when you have a real-time continuous glucose monitor, the expectation that you're going to have a glucose reading in a straight line is very unrealistic," Grace says. "The expectation that we can be successful with diabetes 100% of the time is unrealistic."
He explains to patients that his clinic is a judgment-free zone and that he's not going to tell them what to do. Grace prefers to show patients how much healthier it is for them to get on the right track and stay there: "They seem to respond to that. They're going to do what they want to do as soon as they leave the clinic."
And celebrating the wins helps his patients stay on track. "Even if they're doing poorly, I'm always trying to find things that they're doing well, or days that they were doing well to really encourage the good behaviors," he shares.
For Argento, he empathizes with patients about the frustrations of the diagnosis. "You're now a member of a club that nobody wants to belong to," he says. "Nobody chooses to have type 1 diabetes."
But part of his role is motivating patients to stay on top of their diabetes. He notes that the people who do best are the ones who decide that they will not let type 1 diabetes rob them of their health.
"You can stay in control of your diabetes through persistence and effort," Argento says. "The payoff is that as you feel better, day to day, you can live a full life without facing the potentially devastating long-term complications of diabetes."
Setting a Good Example
When he was hospitalized with hyperglycemia as a child, Lal distinctly remembers being seen by a dietician who had type 1 diabetes. "I remember thinking, She looks completely normal. She looks like she's lived her life without really being slowed down by diabetes," Lal shares.
The advice he received from her at the time was very meaningful. "I remember everyone saying, 'This is a challenge, but you put in the work and the challenge can be overcome,'" Lal says.
Type 1 diabetes can be a very scary diagnosis, especially when families don't have experience with the condition, Nally says.
She shares her own experience living with diabetes with her patients and their families. "When they see this happy, healthy doctor, walking around with diabetes, a lot of times, families will feel a lot better seeing that," Nally says. "Oh, it is possible for you to be successful, live a healthy life and still have type 1 diabetes."
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Cite this: 'Both Sides of the Needle': The Type 1 Diabetes Patient as a Physician Too - Medscape - Aug 01, 2023.