I Could Have Died From My Undiagnosed Type 1 Diabetes

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Literally. By the time someone finally listened to me and tested me for diabetes (my OBGYN of all people), my blood sugars were in the 700s, my heart was pounding, I was breathless, weak, scrawny and falling asleep sitting up. Knowing what I know now about Type 1 diabetes, why didn’t any of my doctors figure out that I had it? Or at least consider it after I kept telling them my symptoms? Some friends had encouraged me to go to a book store (this was pre-Internet) and look up my symptoms, and it was at that point that I began asking over and over to be tested. Finally, after a bit of harassing from me, I was tested.

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It all started the first time I asked my MD to test me for diabetes and after finding an elevated fasting blood glucose, he said, “Oh you probably just drank some orange juice.” But I hadn’t, I responded. Another doctor told me that I “looked good thin,” just probably dieting too much. But I wasn’t on a diet, I protested. In fact, I was eating everything in sight. “Just drink more water,” they said, “you’re probably dehydrated.” But I was drinking what seemed like gallons of water that simply wouldn’t quench my ravishing thirst. “Get more sleep! Stop partying!” they proclaimed. But I was sleeping all the time, in between going to the bathroom, I might add. Nobody listened to me and at the time, I was too timid to protest. (My how things have changed.) The doctors I saw were condescending and dismissive. Here I was with every single classic symptom of Type 1 diabetes, except for one; I wasn’t a child, I was a 32-year-old adult. Huh? So, they weren’t testing me because I was an adult?

Myths about Type 1 and Type 2

At the time, I was at the mercy of the medical community, as I had no history with Type 1 diabetes. And I believe that the confusion exists because of the stereotypes and assumptions about what Type 1 diabetes and Type 2 diabetes look like and how they present to the medical community and society at large.

In my opinion, the stereotype that a person with Type 2 diabetes is always an older, overweight person versus a person with Type 1, who is always a skinny child, is at the root of a lot of the confusion. Well, these stereotypes simply aren’t true. While it may be that many do fit that profile, not everybody does. You have little children who are developing Type 2 and adults who are developing Type 1. You might ask, “Why is this?” Well, that’s a blog for another time.

Back to My Personal Story

So, am I saying that my doctors dismissed a diabetes diagnosis altogether because of these misconceptions? Yes, that is my personal experience. All my doctors had reached into their stereotypical diabetes medical bags and came away with the verdict that because I was a thin adult, I couldn’t possibly have Type 2 diabetes and I couldn’t have Type 1 because I was an adult, not a juvenile? Come on, hadn’t any of these doctors ever seen a newly diagnosed Type 1 who wasn’t a child?

We Live!

It wasn’t that long ago that many children with Type 1 didn’t make it into young adulthood or especially middle age. And if we did, we were often very sick with many of the complications associated with Type 1. Everyone did their best, but the tools we have today just didn’t exist then. Ironically, I believe, those tools are contributing to the confusion. Why? Because these tools are helping us to live a more normalized, healthier life (actually, some of our lives have been saved by these tools) and as a consequence, many of us don’t look “sick” or like we even have a medical condition. I cannot tell you how many times I’ve seen the look of surprise on the faces of people that I tell I’ve had this condition for 27 years! No, we don’t have a cure yet and we are fighting to keep our healthcare, but, we live! Many of us are entering adulthood and even middle age and beyond, showing a lot less of the wear and tear of this condition. That’s the good news. No wait, that’s the awesome news!

Please listen up!

But let me set one very BIG misconception straight. When we turn 21, we DO NOT automatically “outgrow” our Type 1 and then become a Type 2. Those are two very different conditions. As Type 1s, we are dependent on insulin, 24/7 and will be until we die or they cure this thing. Period. No matter what I weigh or eat or how much I exercise, I will still have Type 1 diabetes. I can’t go off insulin simply by watching my diet or losing weight. I wish. We just keep going. And in my case, banging the education, awareness and advocacy drum.

What’s the Problem?

There’s so much information and awareness out there for the adult Type 2 as well as children/college kids with Type 1, but not so much for those of us living our adult lives with Type 1. I believe there is something very important that is missing in the diabetes dialogue and that is the life of the adult Type 1. Those of us living with Type 1 and experiencing good, productive lives in our 30s, 40s, 50s and beyond, are, well, kind of invisible, if you ask me. So, if we are living such good lives, what’s the problem you may ask?

Danger!

Because we are so confusing to so many in the medical community, misinformation about how to treat a Type 1 in an emergency situation or in the hospital can be a literal life threatening reality for millions of us. Treating us like they would treat a Type 2 can have dire consequences. I have personally experienced a stay in the hospital where the doctor on call (not my doctor) ordered a correction injection of insulin for me. My blood sugar was 170 (which for me, in an emergency situation, was not bad) and he told the nurse to give me 10 units of insulin. I will just say this, for me personally, 1 unit of insulin brings my blood glucose levels down 100 points. Do the math. I still shudder at the thought. And yes, I sent that nurse away amid her protests of, “I have to report this to the doctor” to which I replied, “Good.” She never came back. Hopefully she learned something that day.

I’m scared

But as a result of that experience and a couple more, I unfortunately trust very few people in the medical community with my diabetes care. And this mistrust has carried over into other aspects of my personal physical health care. I simply avoid doctors because I’m scared. I struggle every day and often run my blood sugar’s higher than I should because I don’t want to cause an emergency situation where I have to go to the doctor or my ultimate fear, the hospital. As a result, I risk a higher chance of complications, which makes all this ironic, don’t you think? It is what it is and it’s the truth, my truth, of dealing with this condition.

Let me be clear though. Working in diabetes, I have met so many amazing, wonderful, talented and educated healthcare providers whom I do trust and who know and understand the Type 1 adult. I actually have a contact list for my husband of “people to call who know what the hell they’re doing” in case I am incapacitated. However, I believe that they are far and few between. And that’s the rub. We need all of them to clearly and specifically understand the difference in treating a Type 1 adult vs. a Type 2 adult.

Maybe someday I can exhale and learn to trust again, but for now, I keep going. I am prepared at all times to self manage, and I carefully pick and choose who helps me and works with me on my diabetes. Other than that, I love my life and am proud that I have 27 years of managing this elusive and random condition and that I’m still alive and noisy and a troublemaker. And sometimes annoying.

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