The Dread of Being a “Bad” T1 Patient

“Kim, we have the results of your A1C. It’s not good.”

Ever since I was 9, I hated the thought of being a “bad girl” when it came to controlling my T1 diabetes. I would dread appointments for fear I would disappoint the doctors and my parents. When the much-anticipated number was finally announced, I left the office clutching my stuffed animal, either feeling elated or crushed, until the approach of the next test.

We’ve come a long way since the eighties, when shame was a big part of diabetes management. My doctors now carefully avoid pejorative language when we discuss my A1c, but I still feel the same waves of anxiety and shame regardless. Though I try, I can’t seem to shake my anxiety.

I’ve always set high standards for myself, often too high. In my mind, I’m never doing enough to manage my T1. I know there’s always room for improvement, but at the same time, a need for perfection can be dangerous and unhealthy.

When I was diagnosed, the doctors told me I was not to blame for getting diabetes, but I didn’t completely believe them. Deep down, I still felt as if I must have done something wrong. My T1 added a huge layer of stress to my family, and I felt bad for my parents. The last thing I wanted to do was to make them miserable, so at a very young age, I tried to be as independent as possible. If nobody knew exactly what I was going through, I couldn’t hurt them.

I kept things inside and tried to do everything myself, despite being surrounded by loving people who wanted to support me. I didn’t talk about my feelings when it came to my diabetes. Sure, I would talk about how much insulin I was taking, or my food choices, but I tried to mask my emotions. When I was angry about diabetes, I kept it to myself. If I was frustrated, I would opt for writing in my diary instead of telling others. I didn’t want them to worry about me.

It’s impossible to know how things might have been different if I had let my family share more in my T1 management. Perhaps I would have been able to talk about my feelings more and thus dissipate the guilt. All I can do now is to accept help from those around me today, and encourage others to talk about their feelings and experiences with T1.

Social media provides a great outlet for reaching out to others who are going through T1 struggles, just like me. We even develop our own language for discussing things. For example, on Twitter, it’s popular to use the hashtag “#DOC” to reach out to other people with diabetes. It’s like a secret handshake.

Still, shame is an unwanted guest who is slow to leave. I may have lifted some of the burden of shame by getting older and wiser, but the fear of a pending A1c test still hangs over my head. I see people on social media who proudly post their result, and they should rightly celebrate, but I have yet to post my own. Maybe one day. Each day is a new opportunity to accept that I am doing what I can to stay healthy, and that I should be proud of my efforts, regardless of the number.

To learn more about how to combat T1-related guilt, please read “Ending the A1c Blame Game” by endocrinologist Dr. Claressa Levetan.

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Kim Cooper is the editor of OWL Magazine for kids, and has had Type 1 diabetes for over 30 years.

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