“I Needed to Demand the Best”: How I Became My Own Diabetes Advocate
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Learning to live with and manage diabetes after a diagnosis is hard enough. Having to advocate for your diabetes care can be daunting.
If you live in or grew up in a community historically underserved by healthcare systems, speaking up for the care you need can be even harder.
Anna Norton, CEO of the patient advocacy organization, DiabetesSisters, knows firsthand the difference advocating for her own needs made in her diabetes care.
Norton was diagnosed with type 1 diabetes at 18. She had just graduated high school and was getting ready to move away from home for college.
Fighting for care in an underserved community
Growing up in a predominately Latino community in South Florida, where type 2 diabetes was prevalent, Norton’s condition was often misunderstood.
“I was diagnosed in an emergency room, and I spent about a week in the ICU. I left with a pamphlet and a prescription for an insulin pen…I received zero education on how to inject [insulin] or how to keep it stable. I received no education on hypoglycemia,” Norton remembers. “I didn’t know anything about carb counting.”
Norton was also translating between her doctors and her Cuban parents, who only spoke Spanish.
Misunderstood and misinformed
“In Hispanic communities, we all have ‘de facto’ aunties and grandmas, and all those kinds of things,” Norton explains. “A lot of them had type two diabetes, and that’s what I had grown up seeing, which is very, very different from my situation. There were a lot of misconceptions.”
Insulin use was stigmatized, Norton heard comments like: “‘You’re on insulin, so you must be really, really sick’ and ‘How are we gonna make you better for you don’t have to take insulin anymore?’” she said.
It set her up to feel misunderstood.
“It’s really hard to believe the facts when you have so many misconceptions that are being thrown to you from your own community,” Norton remembers.
After her diagnosis, Norton wasn’t referred to an endocrinologist. In fact, her local clinic didn’t have one on staff, she remembers.
“I think there was bias in the way the clinic operated. Maybe it just didn’t have all of the resources that a bigger hospital or diabetes center would have,” Norton wonders.
“I would say that’s more of a societal problem, right? They couldn’t get an endocrinologist in the clinic that primarily served Hispanic patients.”
Hispanic and Latino communities in the United States have a more than 50% chance of developing type 2 diabetes. As a result, this population experiences more severe complications of diabetes such as kidney failure and retinopathy.
Advocating for her diabetes care
When she got to college, a physician on campus taught Norton what he could about type 1 diabetes. Now equipped with a few basics to begin managing her diabetes, Norton was determined to fill in the gaps.
“When I was diagnosed, there was no internet. There were no forums. So, I spent a lot of time at the bookstores and the library. I got a subscription to Diabetes Forecasts, which at the time was probably the only diabetes magazine out there,” she says.
Towards the end of college, Norton learned about a new insulin product, Humalog.
“I went to my doctor at the infirmary and I said, ‘This is the insulin I want to be on—It’s faster, it peaks differently.” Norton had to advocate for what she needed in her diabetes management. She explained, “That was all me.”
Norton used Humalog for a while, but, by nature of being a college student and traveling between home and school, her medical care wasn’t consistent.
“When I would go home, I didn’t have the appropriate medical team in my corner,” she explains. “They were Spanish-speaking and that’s what my parent’s insurance covered. So, I was kind of backed into this one particular clinic that had these particular physicians.”
Norton’s family doctors didn’t understand type 1 diabetes and she was prescribed oral medications. After graduating, she moved back to South Florida, where she says “things got worse before they got better.”
The first endocrinologist after getting set up with her own insurance plan refused to take her off oral medications.
“He did not have a lot of compassion or empathy for me, despite the fact that my behavior and diabetes [management] demonstrated that I needed a lot of support and help.”
The breaking point
Norton felt overlooked and under-cared for. When she questioned her doctor or initiated conversations about her treatment, she received pushback. “I would say something like…‘Why am I on metformin? I’m 23 years old.’ And he’s like, ‘Because you’re fat.”
“‘What does that have to do with anything?’” she’d respond.
A few years later, at 25, she experienced diabetic ketoacidosis (DKA).
At that moment, she made a deliberate decision: “I went to a hospital where my endocrinologist did not work, and I did it on purpose,” Norton explains.“I wanted to be assigned a new endocrinologist.”
“That was probably my very first cry—the very first outward action—that I wanted to make some changes in my management of diabetes,” she says.
Words she needed to hear
In the hospital, Norton was assigned a Latino endocrinologist whose approach profoundly changed her outlook on her diabetes.
“[He] pulled up a chair and sat down next to me, and he didn’t initially ask me about diabetes—he just asked me about my life. I think what he saw was a 25-year-old young woman who was really lost, not just in diabetes, but in a lot of different aspects of life.”
He asked her: “Why are you doing this to yourself?”
Norton recalls answering: “What’s the point of doing anything better? There was a nurse when I was diagnosed who told me that I can’t have kids. She told me ‘Don’t even get married.’ You know, I’ve had these doctors that throw pills at me and don’t really make any changes. No one cares. I’m going to die anyway.”
He was the first doctor to assure her she could have kids, marriage, a career and a healthy life.
“I thought, ‘This guy’s right—what are we gonna do?’”
A new approach to diabetes
Her new endocrinologist took her off the oral medications and prescribed her an insulin pump. When she showed reservations about pump therapy, he connected her with another young woman who had recently begun pump therapy. She showed Norton her device, answered her questions about pumping, and, when Norton got her own pump, trained her to use it.
Working with a competent, empathetic and engaged healthcare provider changed Norton’s entire outlook on her diabetes care.
“I learned from him that I really needed to demand the best health care for me. And if I wasn’t getting that from someone, I needed to get rid of that team and find a new one,” she says.
Today, Norton helps other people with diabetes advocate for themselves.
Norton lives by the philosophy that when you’re in your own corner, you set yourself up to find a healthcare team that will do the same. Norton encourages that when physicians are truly helping you, you can “walk out [of your diabetes checkups] feeling empowered, successful, and armed with the right tools to do the things you need to” more often.