Adult Onset Diabetes – A Personal Story

When my son was diagnosed with type 1 diabetes at age four, we missed the signs. He was frequently urinating, lethargic at times, and guzzling water—sometimes, he even drank from the bathroom faucet. In our defense, it was the middle of summer, and he was an extremely active kid. Due to our lack of awareness, by the time we took him to see a doctor, he was in full-blown diabetic ketoacidosis and spent three touch-and-go nights in intensive care. Through the years, we’ve adapted to the changing technology. When he was first diagnosed, they started us out doing shots and carb counting. He’s had two or three different insulin pumps, but the Dexcom was a game-changer for us.

Diabetes Misperceptions are Dangerous

I’m embarrassed to say we hadn’t much knowledge of the disease. I believed all the misperceptions about diabetes – like it only affected older, overweight individuals. I had heard about juvenile diabetes, but we had no family history on either side, so we had no reason to worry, or so I thought.

Just recently, my second cousin Kelsey, a nineteen-year-old senior at Purdue University, was diagnosed with T1D. Her father, my first cousin, Jeff, was closer to my dad in age. We stayed in touch through the years and occasionally got together when we visited. But of course, as life got busier, the visits grew fewer. Fortunately, we stayed connected through social media.

Social Media Can be a Good Thing

I saw Kelsey wearing a Dexcom CMG on Instagram one day, so I reached out. Her diagnosis as an adult in 2021 was far different than ours, so I asked her to share her experience.

Please tell us your age, date of diagnosis, year in school and career aspirations.

Kelsey: “Hello! I am 21 years old, turning 22 in August. I was diagnosed at age 20 on 10/11/2021. I am going into my senior year at Purdue University studying Aeronautical Engineering Technology, and I would like to work as an engineer at an aviation or aerospace company working with composites or non-destructive testing.”

How did you know you had T1D? 

Kelsey: “I knew that I had T1D for a few reasons. Or at least I knew something was wrong. I had been diagnosed with a case of mono in early September of that year, during which I had various symptoms. To my understanding, though, by the time I began to feel the symptoms of my undiagnosed diabetes, I knew I probably should have been over my case of mono.  

What were your symptoms?  

Kelsey: “My symptoms ranged from increased thirst and urination to increased hunger. I was using the bathroom several times an hour, and no matter how many water bottles I drank, my mouth was dry as if I’d just ran a marathon! I also ate seven to eight pieces of pumpkin pie in one sitting. Since these were loosely symptoms of mono, as well, I didn’t realize something was really wrong until I woke up one day and had extremely blurry eyesight, meaning my vision was starting to go overnight. This was when I began to explore other scenarios.”

It sounds like you self-diagnosed yourself, which is pretty impressive. Tell us about the process of your suspecting diabetes to receiving a doctor’s confirmation. 

Kelsey: “Yeah, so this really connects to the wide range of symptoms I was experiencing, which led me to realize things weren’t quite right. Like anyone else, I went on Google and attempted to diagnose myself. Diabetes popped up as a potential diagnosis, but I knew nothing about the disease and quickly dismissed it. I do remember talking with my mom on the phone at one point and laughing, making a joke about how horrible it would be if I actually had diabetes. She didn’t think it was quite as funny as I did.”

Some adults are misdiagnosed with type 2, and some simply can’t believe someone young and healthy has diabetes. Did you experience anything like that?

Kelsey: “I think the biggest thing I’ve experienced with something like that is with the general public. Much like myself before I had it, no one is really informed on how people develop diabetes. They see someone young and healthy and assume their diet must just be horrible! But that’s not the truth. I want to say my experience with getting diagnosed didn’t include anything like this, which I am really grateful for. The funny thing is you can never tell just how long someone has had diabetes just by looking at their bodies, ages, or medical devices. The CGM doesn’t discriminate. It works the same whether you were diagnosed at 2 or 52. What it comes down to is the fact that people as a whole are incredibly misinformed about diabetes. Commercials are littered with ads for Type 2 diabetics, so why would anyone assume otherwise when meeting someone with diabetes? As long as people are respectful, I’m always more than happy to explain the difference to them. You don’t know what you don’t know!”

You have a sorority sister/friend who is T1D. Was that part of your awareness of the disease? What age was she at her diagnosis? How has she helped you with the challenges of being first diagnosed?   

Kelsey: “I didn’t even realize I had a sister who had diabetes until I told some other sisters I was closer to about it, and they suggested I reach out. It’s funny, though; I feel like once you disclose you have diabetes, all of the brothers and sisters and cousins that have diabetes come out of the woodwork. Everyone knows a diabetic! She was diagnosed when she was younger; I want to say seven years old. Something I will always remember was the message she sent back to me after I reached out. I didn’t even have her number, so I had to reach out on GroupMe. She sent me a long reply expressing how sorry she was and let me know that she was there if I ever needed anything. I didn’t understand at the time why she said “sorry,” having just returned from the “It’s manageable” talk at the hospital, but a little later on, I understood. I remember she also sent me a bunch of blue hearts, of course representing the color for diabetic awareness. Again, I didn’t understand all that at the time and the importance of the blue, but now I get it. I haven’t talked to her in a while, but I hope she is doing well.”

How much did you know about type 1 diabetes beyond your friend? Did you know about the symptoms? Had you heard about my son, Sam having it?  

Kelsey: “I knew pretty much next to nothing about type 1 diabetes. I had heard of it before and vaguely had picked up along the way that diabetics had to wear a pump or “inject” themselves. This might be distasteful, but I thought that sounded so gross at the time for some reason. Even though I wear my tech proudly now, the idea of having some sort of patch attached to my body or inside of it sounded vile, and I had never been a big fan of giving myself shots. Regardless, with a little training and better knowledge on how great pumps and pens were, I quickly found myself loving my diabetes tech and excited to sport it visibly! I’m not sure I had heard of Sam having it before my diagnosis, but my parents really encouraged me to let your family know and reach out if I ever had any questions. I think they thought it would be a good way to make everyone feel a little less alone, and I think they were right.”

How have you adjusted in the few years since your diagnosis? What difficulties did you face (if any) with any of your classes, professors, or work?  

Kelsey: “I’ve adjusted really well and in several ways. It’s funny how things you would never think of before suddenly become second nature. I don’t go anywhere without fruit snacks. I carry them around from machine to machine with me at the gym, I bring them with me if I’m going into a conference room at work and stepping away from my desk, and I always pat my pockets before I go on a walk around my neighborhood. It’s become as innate as bringing my phone or purse somewhere, so I’d say the constant crinkle of wrappers in my pocket has become the biggest adjustment there. I have to be wary of where my tech is pretty much all the time. Changing, drying off after the shower, and even laying down on the couch so I don’t get a phantom low from pressure (that was another adjustment, too ;). In day-to-day life, though, everything else seems to feel the same. Small things here and there may have changed, but overall I’m still living like me. I haven’t met many difficulties in terms of classes or professors. In fact, I’m rather grateful for the reaction I’ve received from them. They’re very understanding and encourage me to care for myself, like my classmates. If anything, people can sometimes be timid about it, as if to not react in a bad way, which I think is very sweet (but definitely unnecessary). I see my ability to take care of myself and be in tune with my body as a strength, so I’m also grateful I haven’t met with many challenges on my own in terms of speaking up about it. My experience with work has been similar. A manager even pulled me aside to confirm my type and ensure I could come to him if I ever needed anything. It didn’t go unnoticed.”

How did you decide on the pump you have? CGM? Do you have issues with either? 

Kelsey: “In terms of the Dexcom, that decision was pretty much made for me at the hospital. That being said, though, it might have been the best decision ever made for me! I love my Dexcom G6. In fact, I’m patiently waiting on the G7. Regarding pumps, I was really back and forth when deciding between the Tandem and Omnipod, but I got the Omnipod 5. I liked that the Tandem pumps were a little more tried and true, but, like anything medical with diabetes, trying to figure out the relationships between myself, insurance, and my doctor’s office was sort of a mess! To no one’s fault, really; those things are always tricky. The Omnipod was in the right place at the right time and was ready for me, so I took the bait. I have been really enjoying my Omnipod and love the versatility it gives me in several ways. Having no tube is very nice, and if I put it in a place I like (stomach, arm, leg), I often forget I even have it on. The peace of mind is nice. Now unlike my Dexcom, with which I’ve barely had any issues, I have had issues with my Omnipod. The biggest thing is just technical errors, which while annoying, are usually easy to fix by turning the Controller on and off (who would have thought).”

What is the biggest challenge you have faced with T1D?  

 Kelsey: “The biggest issue I’ve faced with my diagnosis is coming to terms with the fact that my body is internally flawed. The idea that if I ever caught myself in an emergency, I may not have a fighting chance without my fruit snacks and my insulin and my omnipod and my CMG is daunting. It’s not about having a sickness in itself; it’s about being at an automatic disadvantage by just having the sickness. That’s why I always try to be as best prepared as I can be for anything. I can’t predict the future, and only God knows what’s in store for me, so I try not to stress about that too much.” 

How many other people do you know with T1D? (My son Sam has met three coworkers with T1D!)

Kelsey: “Oh my goodness, the list is growing endless! Coworkers (young and old), people from school, friends and family of friends, you name it! I do find it interesting, though, that I seem to see people with diabetes out in the “wild” more than anything. I’ve met more diabetics at bars, the gym, grocery stores, concerts, restaurants, and other random places than through anyone I actually know. I kind of love it, though. I’m not shy to go up to a stranger and strike up a conversation, so getting to go up to someone who distinctly understands something so personal about me by default is really beautiful.”

What would you tell someone recently diagnosed? 

Kelsey: This is a hard one. When you’re first diagnosed, you’re overloaded with information from doctors and nurses and emotions from friends, family, and yourself. I think I remember being overwhelmed more than anything, and it’s a big task. The nurses and doctors do their best, but at the end of the day, no amount of pamphlets or guided injections comfort you. There’s no hug and “It’s going to be okay” in those manuals, so if you’re lucky like me and had people there, lean on them. They need you just as much as you need them during this time, even if it may be hard to adjust. The one thing I would like to say to someone newly diagnosed is that you will feel like your normal self again. You may have some cool robot technology on you, but you will return to normal, and your life will adjust. You’ll get back on track. Be patient with yourself at first. This is hard, and it’s brand new to you. You won’t get everything right the first time or even the 20th, and that’s okay! It’s like a new job, but just like everything that was once new, you get used to it and learn to understand it like the back of your hand. You learn to listen to your body in a way you may have never been able to before, and you learn a new sense of pride in taking care of yourself. Whether it’s intentional or not, you begin to pay attention to what your body is telling you, and as long as you listen to it, you’ll be more than okay.

Did you receive the COVID vaccine?

Kelsey: “I did get the COVID vaccine. I got it earlier in the year. I was diagnosed in February.”

Is there anything else you’d like to add?

I just want to thank all parents like you who go out of their way to raise awareness for the people they love most. Us kids may not always be the easiest on you or even know how to say thank you, but we appreciate you. Your constant unconditional love is exactly what we need and exactly what you all deserve back. 

Do you Have an Adult Onset Diagnosis Story You’d like to share? 

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