Demand What you Want when at the Hospital

Ginger Vieira Health Guide
  • The day after I was diagnosed, a psychologist named Dr. Mark Detzer came to my room. With him was a teenage girl, Julie, who had Type 1 diabetes.

    Julie looked normal. She looked like my friends. She had blond hair, blue eyes, two arms and two legs—totally normal. The sight of Julie immediately brought an enormous sense of relief to my confused, panicked mind. The doctor’s hadn’t told me anything about how diabetes might change me physically, but I had just been diagnosed the day before—I had absolutely no idea what I was really in store for…plus I have a vivid imagination. Although I’m sure I knew I was getting carried away, I was envisioning my once normal body slowly morphing into some kind of diabetic-alien thing. Give me a break: I was 13.
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    Mark and Julie came to my room because Mark is the director of The STAR Program. STAR stands for Steps Towards Adult Responsibility. The program is a group for teenagers with chronic illnesses. The kids at STAR had diseases like hemophelia, brain tumors, leukemia, HIV, rare blood cancers, severe depression, Crohn’s, lupus, cystic fibrosis, etc. And of course, the most common disease in the group is diabetes.

    Mark recruited college students from the area to work with the teenagers. Some of the students had diseases, too, and some had nothing at all. Once a month, we would all meet for dinner and laugh and talk about life with a chronic illness.

    You can bet your money, at 13 years old, I was reluctant to go at first. Why in the world would I want to sit in a room with a bunch of people who were going to remind me I had this disease and make me talk about it out loud? No way!

    It only took about ten minutes to realize why. These kids knew what it was like. They knew it was like to be 13 and suddenly completely responsible for keeping yourself alive. They knew what it was like to explain to your friends you have a chronic illness. They knew how it felt to wear an insulin pump and have kids laugh at you for wearing a “pager.” They just knew how it felt to be different in the same kind of way.

    And we didn’t even need to talk about it to make each other feel better. We just knew we were suddenly in a room full of people who had to do the same things everyday to stay healthy. Just knowing that, knowing you aren’t the only one, brings a sense of comfort, a sense of relief, that everything will be okay. Sure, you can talk to doctors and your parents and your siblings, who know a lot about the disease, but other kids with diabetes know how it effects you in the little ways, the day to day quirks of it all. They know things that no doctor ever could.

    Not to mention the added perspective of learning what other kids with different diseases had to go through. All the kids with diabetes were glad they didn’t have Crohn’s disease. All the kids with Crohn’s were glad they didn’t have diabetes.

    The STAR program was an invaluable part of my experience growing up with diabetes. If you have a diabetic child, or are a diabetic yourself, I absolutely recommend searching for groups in your area. If you can’t find a regular group, at least spend a couple weeks next summer at a diabetes camp. If you’re too old to be a camper, try to be a counselor. Anything, as long as it involves a large group of people who know what it’s like to live with a chronic illness. I promise you won’t regret it.
Published On: February 01, 2007