There has been much chatter in the Type 1 diabetes community this past week and it all stems from the complete catastrophe of a show that aired on Oprah starring Dr. Mehmet Oz. In a failed attempt to teach about diabetes, all that Dr. Oz managed to do was raise more myths and misconceptions when it comes to differentiating between the two main types of diabetes: Type 1 and Type 2.

This post will not be about his poor bedside manner. Or the awful almost cringe-worthy way he displayed a woman with Type 1 diabetes and her complications as a scare tactic for people ignoring their own Type 2 diabetes. Or the way he is so omnipotent in his own mind that he has the audacity to take on such huge diseases as Type 1 or Type 2 diabetes without having an endocrinologist right at his side as he spoke. No, this post is about quite simply a name. The inability (or ignorance) of Dr. Oz to use the name Type 2 diabetes when he is talking solely about Type 2 diabetes allows for too much confusion when it comes to my son’s disease, Type 1 diabetes.

Something that Dr. Oz said really stuck with me. He said, “the amount of insulin you have to take every day depends on “how bad” your diabetes is.”  While I will not say whether that is true or not for Type 2 diabetes, I will say that is an absolute, unequivocal lie when it comes to Type 1 diabetes. All people with Type 1 diabetes take insulin to live. There is no such thing as good, bad, worse, severe, brittle, pre-, or a little Type 1 diabetes. Type 1 diabetes is what it is. It is the body’s inability to produce its own insulin. Things are happening in a person with Type 1 diabetes body that stop the production of insulin. All cases of Type 1 diabetes require insulin from the minute they are diagnosed. There is no degree of ‘how bad’ that determines whether you take insulin or not.

You may be asking yourself why this bothers me so much. It bothers me because my son lives with Type 1 diabetes through no fault of his own, yet people still feel the need to spew their false understandings whenever they meet us. Strangers see that my son has an insulin pump and they are compelled for whatever reason to say, “Oh he must have bad diabetes.” Thank you Dr. Oz for continuing this myth. No, my son does not have bad diabetes, he has Type 1 diabetes. He needs insulin to live.

Or when yet another self-proclaimed expert on diabetes stops me at a food court and says, “You know your son wouldn’t have to take insulin if you didn’t give him that ice cream cone,” to that I say, thank you again Dr. Oz. If you had only pointed out that all people with Type 1 diabetes need to take insulin regardless of what they eat maybe, just maybe, one single person could have been educated properly as opposed to being  fed more misconceptions.

I know of no other disease that gets lumped with other diseases simply because experts are too lazy to use the proper terminology. When someone is diagnosed with cancer, does the doctor leave it at that? I would imagine a person receiving a cancer diagnosis would like to know if it were pancreatic cancer or skin cancer. I would also imagine that a person receiving a diagnosis of pancreatic cancer would be surprised to be asked from a stranger on the street if they planned on using sunblock to protect their skin now. Sure, aside from being awfully rude and presumptuous, it just doesn’t make any sense.

Type 1 and Type 2 diabetes deserve the same respect. The people living with Type 1 diabetes, the autoimmune disease, deserve the proper name be used even more than the actual disease. The misconceptions that are hurled at my son (and me) are rude, presumptuous, hurtful and in 100% of cases outright untruths that make no sense.

So in answer to my original question, what’s in a name? Everything, Dr. Oz, everything.

When my son was first diagnosed with Type 1 diabetes a few people mentioned in passing that it is the ‘thinking man’s disease.’ I wasn’t sure what they meant until I was inundated with blood glucose numbers, insulin dosage amounts, pump basal and bolus rates, insulin to carb ratios, insulin sensitivity ratios and carb amounts in foods. A diagnosis of Type 1 diabetes means a complete submersion into the world of math. Never since my high school Honors Algebra final exam was I so happy that I still understood ratios and fractions. My son’s life depends on my ability to think through all these numbers and my capacity to apply them to his diabetes care.

What I find so ironic about this disease that requires so much intellectual ability, is that when the person with Type 1 diabetes has fluctuations in their blood glucose number, either high or low, they are unable to think clearly. Unable to do the one thing that keeps them healthy…think.

My son is only 6 years old, so he doesn’t make any diabetes related decisions yet. He does however have to make plenty of decisions when it comes to school. He is currently learning how to add double digit numbers and to read. Yes, read. Something that requires tremendous concentration and memory. Most times he handles school and learning like a champ. He is a very bright boy who can articulate well and grasp new concepts quicker than most 6 year olds that I have met. That is until diabetes steps in.

When diabetes rears it’s ugly head and throws a curve ball such as a high or low glucose reading, my son is no longer the self-sufficient learner that he tends to be. When his numbers are too high or too low he cannot think clearly, he cannot make decisions properly, he cannot retain information presented to him. It is the old Maslow’s hierarchy of needs that takes over. When my son’s sugar is rising or dropping he goes into survival mode. His body gets overcome with the symptoms of the high or the low sugar and nothing other than remediation of the situation is of concern.

When my son’s glucose goes to low he gets shaky, dizzy, sees spots, gets weak in the knees and becomes very tired. Learning how to add 16 +30 is the last thing from his mind. He needs to survive the low, treat the symptoms that are making him feel so bad, and knowing that answer is 46 is not going to do anything to help the low.

Same goes for when my son’s sugar is too high. The first time I witnessed this was about 7 months after diagnosis. In the process of picking him up from preschool I asked him to get his paper off the table. All he had to do was identify his name at the top of the paper out of 10 other names on the table. A task that he had successfully completed every day since the first day of preschool. My son looked at me and said, “I can’t find my name, can you do it.”

I knew something was not right. I grabbed the paper and my son and ran to our truck to test his sugar. Lo and behold his glucose reading was about 500. Above 500!!! With a glucose reading that high my son was unable to read his own name. HIS OWN NAME. Now you tell me how he is supposed to learn to comprehend a story about Penguins or Martin Luther King Jr. when he can’t even read his own name when his blood glucose is too high.

Now having diabetes is not an excuse for not learning in school, but it sure doesn’t help the learning process when the diabetes is not playing a fair game. Type 1 diabetes doesn’t care that my son cries when he gets a math problem wrong because his body was feeling right because of a dropping number. Type 1 diabetes doesn’t care that when my son’s sugar is so high all he can think about is how his head feels like it’s splitting in two, and not that penguins can’t fly.

Type 1 diabetes doesn’t care, but I do, and I hope my son knows that.

As Type 2 diabetes becomes more and more prevalent in our society so are the commercials on television telling you how to avoid getting it. The commercials talk about doctors warning their patients that they have pre-diabetes and with weight control and exercise there may be a way to never get full blown diabetes. What they fail to mention, almost all of the time, is that pre-diabetes is only for people with Type 2 diabetes. There is no such luck for people with Type 1 diabetes. People with Type 1 diabetes don’t get that out. There is no out when it comes to ‘our’ diabetes.

Children and adults that get Type 1 diabetes are usually moving right along in their life when all of a sudden something is not right. Either they get a flu-like illness that won’t go away, or they start losing weight at an alarming rate, or they are never satiated of thirst, or they use the bathroom more times than they can imagine in one hour, but whatever it is and however it happens, it comes on in an instant. And once these symptoms start there is no plan of action other than insulin that can help the situation. There is no slowing down of Type 1. Once the T cells attack and decimate the beta cells in the pancreas there is no exercise or healthy eating that can turn the process around. It is a one-way ticket to having Type 1 diabetes.

The same holds true for severity of Type 1 diabetes. The media is keen on saying that the diabetes was the ’severe kind of diabetes’. All cases of Type 1 diabetes are severe. All people with Type 1 diabetes take insulin to live. Whether they wear a pump or take shots, or test 4 time a day or 12, it doesn’t matter. Every single person with Type 1 diabetes survives on life support, insulin, and manages a chronic illness on a daily basis, that could kill them in more ways than one.

Honestly, I think anything that can kill you while you sleep is severe.

So the next time you see a child with Type 1 diabetes understand there is nothing he (or his parents) could have done to prevent this dreaded disease. And there is nothing he can do to get rid of it either. There was no doctor’s visit where someone gave the heads up that this disease was coming our way. It comes out of the blue and stays for the duration.

Giving insulin for food doesn’t mean a person has severe diabetes, it means he has Type 1 diabetes. All people from the second they are diagnosed need insulin to cover their carb intake. So whether they are eating a bagel equaling  70 carbs, or a whole wheat turkey sandwich equaling 30 carbs, or a piece of candy equaling 11 carbs they still need to take insulin.

So ‘pre-diabetes’, ’severe’, ‘brittle’,  and whatever other word they use to spice up a story are all words used by the media to fill up airtime about a disease that they really know nothing about. Type 1 diabetes is it’s own disease, different from Type 2 diabetes, and it should be treated that way.