On Being Diagnosed With “Juvenile” Diabetes As An Adult

I was diagnosed with type 1 diabetes twenty years ago this month, so my frame of reference for this disease is entirely different from someone who was diagnosed as an adult. For me, strange questions come from strangers, not from my own family. Because I know my experience with diabetes is limited, I’m inviting more young adults to share snippets of their stories. Today, Rachel Kerstetter shares her experience of being diagnosed with type 1 diabetes as an adult, but not having her own diabetes story accepted for what it is.

A Guest Post by Rachel Kerstetter

ProbablyRachelI’m excited to share some of my story with you today and grateful to Allison for the opportunity! When I volunteered to write a post about being diagnosed with type 1 diabetes as an adult, I wasn’t quite sure what I wanted to say but as I thought about it more, the one thing that stood out is the way that other people perceive my diabetes.

For the first 22 years of my life I was a “normal,” healthy girl. I had a reasonably regular childhood and transition into adulthood. Then the busiest summer of my life hit me, I graduated from college in the beginning of May, married my husband at the end of May, really started my career in July… then in August I found myself in the doctor’s office, unsure of how I had dragged myself in there and waiting on the results of a pregnancy test.

My doctor had already called in a prescription for nausea medication to my pharmacy while we waited for results. She came back into the room and sat down beside me on the exam table and calmly said, “Your tests showed a large amount of glucose in your urine and you’re producing ketones. You have diabetes, it’s a pretty serious situation and we need to send you to the hospital. Do you have anyone with you?”

The arranged my admission to the hospital and for my mother-in-law to drive me there. I called my husband to tell him what was happening and I told him not to come, that I would keep him updated. He worked at a medical communications company at the time and when he discussed the situation with them and looked up the numbers from my test results, they told him to go be with me.

It wasn’t until hours after I was admitted that I finally spoke with a doctor and I asked the question, “What type of diabetes do I have?” Everyone just said “diabetes.” No one bothered to explain to me the types and what had happened. The doctor looked at me with surprise in his face and said, “You are a typical type 1.” But it didn’t take me long to realize that I was anything but typical.

The nurses didn’t realize that I was newly diagnosed and had no idea how to give myself a shot until I told them. I realized later that the dietitian they sent to talk to me thought I had diabulimia. The RN who taught me how to test my blood sugar only had a kit for children and nothing for an adult.

When learning about my diabetes, I’ve had people use words like “juvenile” and “brittle” to describe it. I’ve been asked if I’ll outgrow it, I’ve been told that it’s my fault that I have it and my insurance company refuses to call my type 1 anything other than “childhood-onset diabetes.”

I’m often thankful that I wasn’t diagnosed as a child because I know what it would have done to my family. Because diabetes wasn’t a part of my childhood and my family’s environment though, I know that my family doesn’t understand a lot of aspects of it. Like carbohydrate counting. In the beginning it was tough because people tried to feed me sugar-free stuff but without a carbohydrate count. They didn’t understand that I needed to take Lantus at the same time every day and now that I’m on a pump, they don’t quite get that my OmniPods can’t just be stuck back on if they get ripped off.

For friends and family members who don’t see me on a regular basis, I find that they often forget that I have diabetes because they remember the old Rachel. One of the best places for me to start my advocacy was with those closest to me, but it’s been really important for me to remember that the realities of diabetes will never be fully understood by people who haven’t lived with/around it every day. When I call my mom with my latest test results and A1c, I still have to answer the question, “So, is that good?”

~*~

If you would like to share your own story of being a young adult with diabetes (either type) please contact me at amnimlos@gmail.com. P.S. You don’t have to currently be a young adult with diabetes.

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8 Responses to On Being Diagnosed With “Juvenile” Diabetes As An Adult

  1. Interesting perspective. I’ve always wondered if it’s easier to be diagnosed as an adult or as a child. Each seems to have its “upsides” and downsides.

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  3. Melissa E says:

    Thanks for sharing! I was also diagnosed with Type 1 as an adult (26) and faced some of the same issues as you….interesting enough, the year leading up to my diagnosis was VERY similar to yours…bought a house in April, got married in August, started a new teaching job that same August while finishing grad school and graduated that same Dec. I was diagnosed the following June, although I started having symptoms April prior to my diagnosis.

    “I’m often thankful that I wasn’t diagnosed as a child because I know what it would have done to my family.” I feel this same way, grateful my parents did not have to deal with it while I was a child. I feel it is easier to shoulder the burden of being diagnosed when you are an adult but more difficult to change your lifestyle.

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  5. B. says:

    I also was diagnosed with type 1 at the age of 28. It was the year my sister was dying of lung cancer. I was very emotionally distressed but remember being thankful that “at least it’s not cancer”. I don’t think I would have been as easy going about getting diabetes otherwise. A holistic nutritionist and my acupuncturist both believe that it was triggered by my emotional trauma.

    Now, I have to live with the daily struggles of this chronic disease where like you, my family members still have no idea what I can or cannot eat. They just assume I’m fine and will take care of myself. But in reality, it’s still really, really hard to have a chronic disease, especially after living a “normal” life for 28 years! However, I always am grateful that at least I had 28 good years where I made it though college, traveled the world and didn’t have to worry about diabetes. Now that my life is more steady, I find it easier to make healthy, diabetic-friendly choices then when I was younger.

  6. Just a Mom says:

    I was diagnosed this past June as a diabetic after a severe case of gall stones & pancreatitis. I was 42 years old. For 6 months they just said diabetes, most likely type 2 because it was an adult. I finally went to an Endocrinologist who looked at my test results and confirmed I was a Type 1. I am grateful I had 42 years as a non-diabetic. But now this is a new chapter in my life and I embrace it as such. I think my positive attitude has helped me cope tremendously.

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