In her own words: living with type 1 diabetes

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Amy is a 30-year-old dietitian from California. She has been living with type 1 diabetes for 23 years. She combines diet, exercise, and medication to manage her disease.

What was your first sign that something was wrong? What symptoms did you experience?

When I was 7 years old, I was sitting in church with my parents one morning and began experiencing extreme thirst. I had to get a drink and go to the bathroom before the service was over. Then, I was very thirsty again by the time we got home. My father, who had type 1 diabetes, was aware that these were potential symptoms and so I was checked for diabetes.

What was the diagnosis experience like?

I went to a local health clinic where they gave me an oral glucose tolerance test, in which I drank a cola syrup and then had several blood draws over four hours. The results were positive for diabetes. I was admitted to a hospital so that they could get my blood sugars under control and educate me about my condition. I was taught how to test my urine—there weren’t blood glucose meters at that time—and how to give myself insulin. I had to practice injecting insulin on a grapefruit and a doll. I was also taught about meal planning and diabetic exchanges.

What was your initial and then longer-term reaction to the diagnosis?

When I was first diagnosed, I didn’t like being “different.” My first day back at school after being diagnosed was my 8th birthday and, to celebrate, the teacher had grapefruit sections and Ritz crackers for me and cupcakes for the rest of the class. That was frustrating. I remember being mad at my Mom, because I thought it was somehow her fault that all of a sudden I was being treated differently. But while I was mad at my Mom, I was also, for the first year or so, afraid to be away from her, in case I had an insulin reaction or something.

When I hit adolescence, I was very angry that I had this disease and I rebelled against it. I never did anything drastic, like skip injections, but I wouldn’t tell people I had diabetes and I’d make sure that I’d cover up reactions so no one else knew. When I went to college and majored in nutrition, I finally came to terms with the fact that this is a chronic disease and if I want to live a long, healthy life, I’ve got to take care of myself.

How do you manage type 1 diabetes?

I’m on intensive insulin therapy, which means I take three to four injections a day. The dose is based on my blood glucose readings. Diet is a big factor in management. I do carbohydrate counting, which means that I aim for a certain number of grams of carbohydrate at each meal and snack and my insulin dose is based on that. But I can also adjust my insulin based on my meals, exercise patterns, and special circumstances, such as Thanksgiving, when I know there will be a lot of carbohydrate-rich foods. And then there’s exercise, which is also crucial to my management. Exercise not only helps control my blood sugars, but for me it’s a big stress reliever, and stress drives my blood sugars through the roof.

Did you have to make any lifestyle or dietary changes in response to type 1 diabetes?

When I was first diagnosed, the prescribed diet was “diabetic exchanges.” And, of course, there was the “DO NOT EAT SUGAR” rule, which made things difficult, especially since all the sugar-free products they made back in the 70s were pretty awful. Now, carbohydrate counting, regular exercise, and stress management are very helpful to me.

Did you seek any type of emotional support?

Yes, but I’ve found it difficult to find support for someone at my stage of the game and with my level of knowledge. There are several support groups and counselors who work with people who are newly diagnosed and who are frightened and don’t know what to expect or how to deal with this major change of life. I’m past that point, but I still have concerns and frustrations related to my condition. Unfortunately, I don’t have any close friends or colleagues who also have type 1 diabetes and can relate to and understand me. I could discuss certain things with my Dad, but it was still different because he wasn’t my peer.

Does type 1 diabetes have an impact on your family?

Absolutely. When I was first diagnosed and when I was being a rebellious teenager, my family worried a lot about me. And now that I’m a single woman living alone, they continue to worry.

What advice would you give to anyone living with type 1 diabetes?

Get as much education as you can. A single visit with a dietitian is not sufficient. Get as many visits as your health insurance will cover and get a visit with a certified diabetes educator if the dietitian isn’t one. Also see a nurse to learn about other aspects of care, such as what to do when you’re sick, how to care for your feet, etc. And then, exercise, exercise, exercise! There’s so much stress related to having a chronic disease. Anything you can do to control stress will make any other aspect of management easier.

Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.