Living With Type 1 Diabetes

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Before I even begin here, I want to give a general disclaimer that this is my personal experience and I do not, in any way, intend to speak on behalf of everyone living with an autoimmune illness/chronic illness. I only aim to share my story, with the intent to let others who may have similar experiences know that they are not alone.

At the fresh age of 23 years old, I was diagnosed with Type 1 Diabetes Mellitus. Most people just know it as “Type 1 Diabetes,” sometimes abbreviated as T1D. What many people still do NOT know is that T1D is an autoimmune illness, unrelated to a person’s lifestyle or sugar consumption.

Type 1 Diabetes occurs when someone’s immune system mistakenly perceives the cells in the pancreas that produce insulin – known as “beta cells” – as a threat and then destroys them. This causes the person’s pancreas to stop producing insulin, sometimes slowly over the span of years, or sometimes in just a matter of months. Insulin is a vital hormone that enables the body’s cells to process glucose for energy. Without insulin, the cells cannot process glucose, and it builds up in the blood stream. That buildup is known as “hypoglycemia.”

A T1D patient must manually manage their own insulin, whether that is through daily injections, or a medical device known as an insulin pump. Everyone’s journey and preferences for T1D management are different.

…Back to my story! As a young adult, I found myself incredibly confused. I had grown up with no real knowledge of diabetes, other than that it had something to do with sugar and sometimes children got it and that was bad. In fact, T1D was formerly popularly known as “juvenile diabetes,” though I hear that less and less these days. So, why, then, was I diagnosed at 23?

As it turns out, it’s far more common than most people know for an adult to be diagnosed with T1D. The more I connected with others who are diagnosed, the more I came to understand just how common it is – and at that point I began to feel a bit relieved and less ashamed.

Learning to navigate Type 1 Diabetes as an adult was difficult. I didn’t have a parent there to guide me or keep me on track – it was pretty much entirely on me to figure it out, with the occasional help of a physician or endocrinologist. I started as most patients start, with daily injections. Up until that point in my life, I had been highly afraid of needles. Let’s just say, I had to learn to get over that quite quickly!

Twice a day I had to inject one form of long-acting insulin to stabilize my blood sugar through the day. Roughly 5-7 times a day I had to inject a different form of insulin before and/or after I ate any food to prevent my blood sugar levels from rising too high. There was a lot of trial and error, and figuring out the correct dosage remains a challenge still, five years on.

At the time, the doctors wouldn’t allow me to start insulin pump therapy because I was pregnant. I waited until I was three months postpartum to begin insulin pump therapy and found myself entirely disappointed with the entire experience. Insulin pumps seem to be marketed as an “easier” form of treatment than daily injections. While this may be true for some people, I found it just as much of a hassle. The insulin pump essentially works as an electronic pancreas; it is attached to your body through a small tube under the skin secured by a port with an adhesive patch. You can also wear a blood sugar sensor on your arm, stomach, or hip that uses Bluetooth to send your blood sugar levels to the insulin pump, or just check and enter them manually. The device then decides how much insulin to deliver based on the readings from the sensor (or what is manually entered). You can manually enter an amount of insulin for the pump to deliver during mealtimes or for a “correction,” when your blood sugar is too high between meals. All that was just as much work as a daily injection, in my opinion! You also have to ensure the device is charged, just like a cellphone. Half the time I had a sensor and a port on, the adhesive would fail, and it would fall out. The pumps are extremely expensive to replace and trying to jump through hoops with insurance companies AND the manufacturers was a nightmare. I began to feel like my life revolved around these devices, rather than the devices making my diabetes management any easier. And, if for any reason the device malfunctioned and I couldn’t use it to deliver my insulin, I had to carry around backup supplies for injections, anyway.

After giving the robot organ a chance for a little under two years, I decided to ditch it and go back to daily injections. I feel so much freer now. I no longer have to worry about all of that and can focus more on the things I enjoy doing, like writing this article for The Advocate, going to class and learning new skills while making connections and building a career path, and spending time with my family. Living with and managing an invisible illness is hard, especially when no one can see what you are struggling with when your symptoms flare up during the up-and-down fluctuations of blood sugar levels. I hope this article helped educate you if you didn’t understand diabetes yourself. And if you also struggle with any form of autoimmune or chronic illness, I hope this helped you feel less alone and helps to validate your experience.