As I’ve brought up before, we have multiple aspects of our lives that make up our identities. There are different talents, experiences, adversities, etc. that yield the perspectives and emotions that make us who we are. This week I want to dive into my personal story of my diagnosis and life as a type 1 diabetic.
It’s still a newer change in my life, and it’s not necessarily comfortable to open up about, but I have a platform and a story that should be shared. I’ve learned that there’s a strong community of Type 1s out there, and I’d be remiss if I sheltered my stories and my perspectives from the world. I’ve shown my sides as a son, or as an athlete, or as a college student, so it’s only right that I share this side, too.
‘Diabetes’ is an ugly word with an ugly perception stemming mostly from ignorance. As I’ve come to learn, most people don’t really know what type 1 diabetes is, which is understandable because I used to be in the same boat. For those that need background, I’ll take the time to explain before I get personal.
The biggest misconception associated with type 1 is that it’s a consequence of a poor diet and lifestyle, when in reality it is an autoimmune disease. This means that one’s own immune system attacks one’s own body, which is obviously out of our control. In the case of type 1 diabetes, the immune system mistakes insulin-making beta cells in the pancreas for pathogens, and attacks them. Type 2 diabetes is when you intake more glucose than your pancreas can make insulin, which can be a result of a poor diet. Either way, insulin is the body’s natural hormone that regulates the amount of glucose in the blood, aka blood sugar. Without insulin to break down glucose (carbohydrates, sugar, etc.), one’s blood sugar could reach extremely high levels, causing muscle breakdown, weight loss, and even comas in extreme cases. These symptoms occur when blood sugars are consistently above 250 milligrams per deciliter (mg/dL) for many consecutive hours. A normal blood sugar range is 70-100 mg/dL, for reference.
Those symptoms of hyperglycemia are indicators of type 1 diabetes, and are typically what bring people in to their doctors to be diagnosed. In my case, none of that happened, and I truly believe that I have one of the luckiest stories out there.
I was at a rehearsal dinner on October 18th, 2018 and I was scheduled to go get routine bloodwork the next morning as a part of a September sports physical. That night I ate right up until the fasting deadline, including plenty of cake and such. The results from the next morning’s test came back perfect, everything was normal except for my fasting blood sugar, which was 145 mg/dL. That’s higher than average (70-100 mg/dL) but really not alarmingly high, so we chalked that number up to how much I ate the night before the testing.
To be safe, I went through two more tests over the next three weeks. I had made some changes to my diet and eliminated my traditional high carb intake for training. They were having trouble really finding any concrete evidence to diagnose me until the third test, where they found the antibodies that attack the insulin making beta cells present.
I went to my trainer on a typical Wednesday in November and my dad showed up to tell me that I wasn’t working out that day, then he asked me to step outside to chat. My first thought was that somebody close to us had passed away. I really hadn’t given much thought to these tests meaning anything, especially since I showed no symptoms. I really had no idea what my dad was going to tell me.
When we stepped outside, he told me that my doctor thinks I’m a type 1 diabetic and I had two immediate thoughts pop into my mind. The first being, thank God nobody died. The second was of curiosity, wondering how long I had lived with it to that point because I at least knew that it was an autoimmune disease. I got down to my doctor’s office that afternoon and he told me what they had concluded and why, but there was still some level of uncertainty. I asked to get finger pricked, and my blood sugar at that moment was 87 mg/dL, which is a completely normal number. At that point, everyone in the room is confused.
As it turns out, they caught this almost as soon as it started. At the end of the day, as long as those pancreas killing antibodies are present, you can be diagnosed as a type 1 diabetic. And so I was.
Honestly, I laughed when they told me. I didn’t have any other emotion. My doctor even said, “you’re taking this exceedingly well.” In my mind, there really is no other way to take something like that. I told my doctor that you have to admit it’s funny because it’s unexpected. It occurred out of no fault of my own, there’s nothing to regret or get down about. The only choice is to take it in stride and move forward with this change.
I went to the hospital the next day, November 7th, to meet with an endocrinologist, get educated on what’s going on, and learn my new routine. My a1c level (a measure of how well the body has controlled the amount of sugar in the blood over the previous two to three months) was 5.6%. The normal range is 5.0-5.5%. I got my blood sugar tested every four hours, and every time I was within an acceptable range. The nurses had never seen anything like it. I was still making enough insulin to regulate my blood sugar without synthetic insulin. It’d stay that way for six months.
I stayed in the hospital for a night and got out on Friday, November 8th. I went to a wedding on the 9th, and back to school on the 11th without anybody really knowing what happened days before. I didn’t like the thought of the attention or pity it might’ve brought. I pretty much kept it under my belt until May. Only the people closest to me really knew. I decided to eventually make it public because there’s no shame in it, and you never know who might be struggling with something that they need to get off their chest.
Since then, I’ve learned a lot. At the time of my diagnosis, I was 17 years old in my senior year of high school and already decided on my college plans. It’s much more common to see people diagnosed with type 1 before they turn 14. At those younger ages, parents typically step in and manage their kids’ days for them. Because I was essentially an adult at diagnosis, I’ve had to learn everything independently, and that’s helped me to grow.
I’ve learned how to manage changes and inconsistencies from day to day. There’s no standard handbook to managing diabetes. Since my diagnosis, I’ve left that initial ‘pre-diabetic’ phase. Some days are easy and some days are volatile. I’ve learned the art of carb counting. Synthetic insulin is given on a ratio of carbs. For example, one unit of insulin covers 20 grams of carbs. That’s how insulin is administered through either a pump or a needle. Overestimating insulin leads to hypoglycemia, or low blood sugar… underestimating leads to hyperglycemia, or high blood sugar. Both are dangerous in their own ways. With that being said, I’ve had to administer hundreds of shots and consistently monitor by blood sugars as an athlete. It’s all just part of it.
To help track blood sugar as an alternate to finger pricks, there are Continuous Glucose Monitoring charts. Here’s what two of my CGM charts look like on a range of 240 mg/dL high and 70 mg/dL low:
This is all a piece of my identity, which is weird because I lived almost 18 years without it. It’s strange that when I meet people they know me as a diabetic, but some family and close friends forget because they’ve known me for much longer. It can be hard to stay level, and by that I mean literally within a blood sugar range and figuratively with emotions. So, figuratively this post can relate to anyone reading it.
There certainly can be an overload of emotions involved in situations like these. Sudden changes can be overwhelming, especially when the news isn’t necessarily positive. But, I’ve never had a ‘why me?’ moment. I’ve never looked at myself differently. I’ve never drowned in a pool of self pity. There’s no time for that. A lot of my emotional control was really for my parents. They were more confused and uncertain than I was initially, and I felt like I had to step up and be their rock honestly. So much of life is reacting to things that we can’t control. It’s easy to let external factors effect your moods and emotions.
It’s also easy to lose patience. For example, people love to ask, “can you eat this?” and I know that irritates a good number of diabetics. The insulin shots also make people curious; they ask “does that hurt?” or they say “I don’t know if I could do that.” As a good friend of mine put it, I’m pretty sure you could do it if you had to stay alive. I laugh a lot of that stuff off because it really doesn’t bother me. As I said from the top, I understand that there are many levels of ignorance out there. There are two lessons in that really. One is to not let the little things bother you, and the other is to educate yourself before you speak on a topic you might not know much about.
At the end of the day, being a type 1 diabetic just means that your pancreas doesn’t function ’cause your body decided to attack itself. It’s not a dietary disorder or a lifestyle issue… and it shouldn’t stop anyone from accomplishing what they want to do in life. I’ve been gifted with this platform and it is only right that I use it to share my story and the perspective I’ve gained from it. There are going to be different challenges of different magnitudes in every day. To my type 1 audience, stay positive. To everyone else, do the same. Through all of life’s circumstances.
For more information on living with type 1, medical advancements, or donations, visit the link to JDRF’s homepage below:
Until next week, stay happy, stay healthy, and stay at home!