My Type 1 Diabetes Diagnosis Story

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I was diagnosed with Type 1 Diabetes a month before my 18th birthday. It was a life changing diagnosis that no one was expecting, because I had virtually no symptoms! Here’s how they caught my chronic illness, and how I’ve been doing since.

THE BEGINNING

I had gone to a doctor one day after school with my dad to get a sports physical done. Several of my friends that year decided to join the newly formed softball team, so I figured I would too.

I’m not athletic. I don’t even really enjoy team sports. But I figured everyone else was doing it and it was the spring of my senior year of high school, so why the heck not?

One awkward urine test later, a balding, pot-bellied doctor lumbered into the exam room to tell me my blood sugar was high. Great. I didn’t really know what that meant, practically speaking. I did know, however, that my four boxes of Thin Mint Girl Scout cookies had arrived that day and I may have eaten half a box over the course of a few hours before this appointment. So I let the doctor know that was probably why the sugar number was so high. He let me know that I should be able to eat all four boxes without my blood sugar going much over half of what it currently was.

It was news I didn’t really know how to process, so I did what any rational 18-year-old girl would do in that situation: I cried. For about four hours. To my parents, my boyfriend, my friends, myself.

A week later my endocrinologist handed me my first insulin pen and told me to try it as if he were asking me to try a new flavor of gum. And I cried again. He took my hand, grabbed the pen, and did it for me. It didn’t actually hurt as much as I thought it would, but there was something about willingly, intentionally inserting a sharp object into my body that I couldn’t mentally get over at first. At school, I would go into the bathroom at lunch, needle in hand, and stand in front of the mirror and wait—sometimes for an hour at a time—to muster enough courage to somehow get that needle in. I spent many lunch hours like that, at first.

When I was first put on insulin, my blood sugar shot right back down to more normal levels, though it would never again return to what it was before I was diagnosed. I experienced a low blood sugar for the first time. That shaking, heart-pounding, sweaty, oh-my-God-I’m-going-to-literally-die-right-here-right-now-if-I-don’t-eat-ALL-THE-FOOD-EVERYWHERE feeling. I found myself losing weight (and I was only 110 pounds at diagnosis) because it was either eat that yummy [insert basically any food here] and take a shot, or…just not. Most often I chose not and didn’t even realize it.

THE BACKGROUND

This is the point where the story will make a little more sense if I clarify a couple things. Like what type 1 diabetes actually is, especially as it compares to type 2.

Medical Disclaimer: The content of this blog post is not medial advice, nor is it a substitute for medical advice, diagnosis, or treatment. This post is for educational and informational purposes only. It is the reader’s responsibility to review all information regarding any medical condition or treatment with a healthcare provider.

Imagine a cell in your body is like a house. Every house has a door, and every door has a lock and key. When you eat any food with carbohydrates in it, those carbs are broken down into a type of sugar called glucose. Once broken down, glucose passes through your blood stream into your cells, giving your body energy, helping you survive. When you’re a diabetic, your cell’s “door” (in keeping with the house metaphor) is locked, so your blood glucose (or “blood sugar”) can’t enter the cell and instead stays built up in the blood stream. Left untreated, too much sugar in the blood stream can cause retinopathy, blindness, neuropathy, kidney disease or failure, heart disease, stroke, coma, and death.

The key to unlock the door of your cell “house” is called insulin, which is produced by the pancreas. Type 2 diabetics are resistant to the insulin their bodies make (they make the wrong set of “keys,” so to speak), whereas type 1 diabetics’ bodies do not make insulin at all. Someone with type 2 diabetes might be resistant to insulin because they’re overweight or elderly. In contrast, type 1 diabetes is an autoimmune disease. Type 1 diabetics cannot produce insulin because their body’s immune system mistakenly attacked and killed the beta cells that normally produce insulin in the first place.

The important thing to take away is that type 1 and type 2 diabetes are two very different diseases often treated and managed in very different ways. Type 2 diabetes (and only type 2 diabetes) can be managed or even reversed simply by eating properly, exercising, losing weight (when applicable), or by taking oral medication that aids the body in utilizing the insulin it is still producing. Type 1 diabetes, on the other hand, has nothing to do with the food you eat or the lifestyle you keep—type 1 diabetics are often children, adolescents or young adults living active, healthy lifestyles. What causes type 1 diabetes is still not entirely certain, and although it is important for type 1s to eat healthy and be active, doing so will do nothing to change the fact that they cannot produce insulin. Only 5% of diabetics are type 1, and before the advent of synthetic insulin in the 1920s, most type 1s would never live to see their 40s.

I AM THE 5%

I did not eat too much sugar. Those Girl Scout cookies, though sinfully delicious, weren’t at fault. My pancreas just crapped out on me one day, and they discovered it completely by accident. I didn’t even have symptoms yet. I was, in the most unlucky way possible, quite lucky that they found me when they did.

This March makes it six years since I’ve been diagnosed. You would think that would be enough time to process what happened, but in the last few weeks I’ve found myself feeling even more helpless than 18-year-old me felt that afternoon my doctor handed me a needle and said have at it.

You see, my blood sugar is out of control. And by that, I don’t mean that my average blood sugar is through the roof but rather that I can’t keep it in control. My diabetes controls me, and I detest it. I’ve had to sit in misery through low blood sugars and babysit high blood sugars in the middle of the night multiple times a week and sometimes multiple times a day. And that’s only a small piece of my frustration. I don’t just hate diabetes, I loathe it with the fiery passion of a thousand suns. And even that colorful imagery doesn’t do justice to my feelings.

But I’ve fought against it, and I’ve lost. Every time I eat something and my blood sugar spikes too high, it just feels like I’ve lost.

So I’m going to surrender.

I’m going to surrender in my fight to live the life I used to lead as a non-diabetic. I wear an insulin pump, which is an iPod-looking thing that I can manipulate to give me insulin without having to take a shot every time I put food in my mouth. I now only have to give myself a shot once every three days. It’s been a blessing and a curse. Fewer shots each day is the blessing. The feeling that now I can eat what I want because I have a little pancreas clipped to my jeans (which is not entirely an accurate description of it) was the curse.

I ate like the non-diabetic I used to be for a long time, wrestling with high blood sugars, gaining 25 pounds in about a year and a half because of all the insulin I had to use to cover all the carbs I was stuffing my face with (taking high amounts of synthetic insulin has been linked to weight gain, although I’m sure the bad food didn’t help). I became obsessed with eating carbs—pasta, bread, foods I have to strictly limit—because managing my disease requires me to think about eating—or, more accurately, what I can’t eat—all day, every day. We all want what we can’t have.

TAKING MY LIFE BACK

But while I’m surrendering, I’m not surrendering to my disease. That I will always be fighting as long as I have it. In these two weeks since I’ve last posted on this blog I’ve made time I thought I didn’t have to start exercising more regularly. I bought an upstairs-apartment-friendly workout DVD set that I committed to doing for 6 weeks. I’ve dusted off my gym membership card and actually used it. I’ve started counting my calories, which by necessity forces me to eat more vegetables and limit my carbs, which I should really be doing anyway. I’ve stepped outside my comfort zone and even began a Body Flow and Zumba class. My hips definitely lie, but it was super fun! I also set up an appointment with a new endocrinologist at the Joslin Diabetes Center who, according to a friend of mine, works magic on your blood sugar numbers. So I’m taking my life back.

I started writing this post almost three weeks ago when I was in a very dark place. I was angry. I was bitter. I was negative. But now? I haven’t felt this good in a long time. And I’m going to continue choosing and working hard to feel that way, because my happiness won’t be ruled by my disease. I joined a Facebook group for women with Type 1 Diabetes and a huge weight was lifted from my shoulders just seeing that there are other women out there going through exactly what I’m dealing with. There are other people out there who get it. There’s something like 19 million diabetics in the US, and yet somehow it is so easy to let ourselves feel very alone.

Update March 2022:

After sharing my diagnosis story, I received some much needed mental health counseling. I was struggling with health anxiety, and while it is still something I actively manage, it no longer dictates my happiness the way it once did.

Since originally publishing this post, I went on to bring my A1c down from 8.1 (the highest it had been since my diagnosis) to below 6.5. In fact, my A1c has been under 6.5 for the last 8 years! I’ve also gone on to have two healthy and diabetes-complication-free pregnancies (my A1c was maintained between 4.9-5.2 during both pregnancies). I exercise 5-6 times a week and fuel my body with much healthier foods nowadays, which helped me lose 68 and 53 pounds of after each of my pregnancies. At 32, I currently weigh what I weighed in college!

I say all this not to toot my own horn, but to let you know that you can do this too. If you find yourself newly diagnosed, know that you can live a healthy, fulfilling life. And it all starts (in my opinion) with mindset. If you’re struggling mentally, seek support. And if you don’t know where to begin adjusting your diet or your lifestyle habits, seek information. This book is a great place to start.

You got this.

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• Living With Type 1 Diabetes: Frequently Asked Questions
• How To Plan For a Pregnancy With Type 1 or Type 2 Diabetes
• Little Bo’s Birth Story: My Type 1 Diabetes Pregnancy
• Little Lo’s Birth Story: A Type 1 Diabetes VBAC Attempt
• Breastfeeding With Type 1 Diabetes: Your Questions Answered