"You have diabetes? How? You're not fat."

Well, it took 11 years and five months, but it finally happened. Yesterday, I was getting a manicure and my insulin pump beeped. The technician heard it and politely asked if I needed to respond to it. I said "oh no, it's okay. That was my insulin pump, not my phone." The next words out of her mouth...

"You have diabetes? How? You're not fat."

This, friends, is why it is so important for those with a chronic illness to be their own advocates. There are so, so, SO many stigmas and so much false information (hashtag fake news) out there about what illnesses are, why they happen and what they mean for the person dealing with it. The only way to change that is for those living with it to speak up, and those around them to listen before making assumptions. Diabetes is probably one of the more commonly misunderstood diseases out there.


I will say, this comment comes off very insensitive but the women who made it speaks English as a second language and did not grow up in the US. I would guess that diabetes is 1) much less prevalent and 2) treated much differently in her home country, if discussed at all. She went on to ask sincerely if I was okay. I believe that there were linguistic and cultural factors that also influenced the initial interaction and I honestly don't hold anything against her. But this is just one of many comments I've heard over the years about my diabetes (or just my health in general) that are based on a lack of understanding of the disease. 

By a show of hands, who has ever made a joke or haphazardly said they would get diabetes because of what they were eating? Almost all of us? ...yeah, that's what I thought. I will admit that even I do it, and I live with this deadly disease every single day! Diabetes is not my primary health condition, so I don't always give it the attention it deserves, but yesterday's experience was a much needed reminder. I decided to take this an opportunity to share some fast facts on the blog today. A little Diabetes 101 by yours truly, for anyone who like the sweet lady yesterday, may not know otherwise.

What is diabetes?

Diabetes is a serious medical condition occurs when the body's ability to produce or respond to insulin is impaired. Insulin is hormone made by the pancreas and it allows for glucose (sugar) to move from your food to your cells to be used for energy. Sugar is literally the fuel that our cells, organs and body rely on to carry out their many functions every single day. Without insulin, the sugar stays in your blood and cannot get to your cells. I was going to say it's like filling up a gas tank, but cutting the gas line that lets the fuel move to the engine of the car, but then I found this little comic and it's definitely more relatable. Or maybe I'm just suck at fixing cars/am in the mood for pizza. Who knows..

Okay, so now that we know WHAT diabetes is, it's important to understand there are different kinds of diabetes and they have to be treated differently. You wouldn't buy the same size crate or type of dog food for a Great Dane as you would a Mini Dachshund, would you?

Type 1 diabetes is an autoimmune disorder in which the body attacks and destroys the cells responsible for producing insulin.

Although funny, this meme is a perfect example of those jokes I mentioned earlier that we are all far too guilty of. There is NOTHING that a type 1 diabetic did (or ate) to cause their diabetes, nor could it have been prevented.

T1 Diabetics are insulin dependent as their body is 100% incapable of making its own. Historically, this was called juvenile diabetes and was diagnosed in childhood, although many are now being diagnosed as adults so that term is no longer accurate. It is commonly triggered by a trauma to the immune system such as a virus, but can also just show up randomly. There is no cure for type 1 diabetes, only daily management options. Insulin is a liquid medication that must be injected into fatty tissue to be absorbed, thus, patients must give themselves shots multiple times a day, every day, or be attached to an insulin pump 24/7 that sit under their skin and gives them medication when programed. T1 diabetics are also sometimes called "brittle diabetics" as they are at risk for extremely low or extremely high blood sugars, both of which comes with many uncomfortable, physical symptoms and if untreated, can result in a coma or death.

Type 2 diabetes is a condition in which the cells in our body becomes resistant to the insulin it is producing.

It is most often caused by obesity, age, unhealthy habits (poor diet, smoking, etc), genetics or a combination of the above, but it does not correlate absolutely to being "preventable" or "their fault." Most of the time, yes, it was preventable, but sometimes, things just happen! Life is tough and our bodies just get worn out. Everyone should make their health a priority and make good decisions regarding diet and exercise whenever possible, but even then, it is sometimes beyond your control and you just have to make the most of the situation you find yourself in. And even if someone's diabetes was caused by their weight... they don't need you to inform them of that. Be sensitive, be kind. No one wants to be sick and if it was that easy for them to have changed, they likely would've already done so.

Most individuals diagnosed with T2 diabetes are over the age of 40 and it accounts for 90% of all cases. Many are able to control their condition without insulin through exercise, diet or oral medications. Some are even able to reverse the effects completely, but they must maintain their healthy lifestyle to avoid relapsing. Some will have a harder time controlling their sugars with non-invasive measures and like T1, they must resort to shots or an insulin pump. T2 diabetics do not usually experience the extreme highs or lows that T1s do, but they are at risk for a number of secondary complications (heart, kidney or nerve damage, eye problems, etc) if they do not manage their condition and have prolonged high blood sugars.

"Do you have type 1 or type 2 diabetes?" "Neither."

Here's where it gets really fun... while most instances of diabetes will fall neatly into this two categories... people can develop diabetes for WAY MORE REASONS than just those that lead to Type 1 and Type 2! Pregnancy (known as gestational diabetes) and being on high doses of steroids/immunosuppression drugs are two of the most common "other" types of diabetes, but any condition that causes significant trauma to the pancreas or the insulin receptors in the cells can also result in "secondary diabetes." Some of these are resolved with time or medication changes or you know, not actively creating another human in your tummy... but some are incurable and require lifelong treatment.

My diabetes fall into this "neither" category and that fact alone is one of the single most difficult aspect in managing it. While it would be nice, I don't expect the general public to understand this when it affects such a small percentage of the population. My frustration lies in the dozens of times I have had to defend my "neither" diabetes to people within the healthcare community. I couldn't tell you how many times I've filled out a healthcare related form that asked if I had diabetes, then what type, and I was only given the option of Type 1 or Type 2. No other option, no room to comment. And insurance companies? Now that's what I call a joke. I am currently in the process of filing my SEVENTH APPEAL in three years to have my diabetic supplies paid for so I can properly manage my disease. Their reason for not covering it is that I am "not a type 1 diabetic" even though I am just as dependent on the machine as a T1. The last denial I got came within 5 days of receiving what was suppose to be a 12-Month Prior Authorization. I'm sorry, but no amount of diet coke and extra treadmill sessions are going to make up for the irreversible scar tissue that has happened inside my body.

No form of diabetes is easy to manage, but the archaic, black and white mindset that if someone has diabetes has to be either type 1 or type 2 is definitely an area that we as a community need to VASTLY improve upon. No matter how small, the percentage of individuals fighting this disease in the "Neither" category deserve the same resources and support that their T1 and T2 peer have.

#sorrynotsorry for that little soapbox... now let's learn a little bit about what "Neither" means for me!

My diabetes is a form of secondary diabetes and is a direct result of my cystic fibrosis. So much so that it is literally called "Cystic Fibrosis Related Diabetes."

CFRD happens in around 40% of adults with CF. It is usually diagnosed as a teenager but can be diagnosed earlier in childhood, or later in adulthood as well. The primary issue with cystic fibrosis is that the body produces too thick of mucus. This is what leads to so many respiratory issues (it clogs up the lungs), but it also often leads to an obstruction in the pancreas causing the digestive enzymes made by the pancreas to remain stuck there. Over time, the enzymes cause scarring in the pancreas itself to the point that it can't produce enough insulin to properly regulate your blood sugar, the same way a Type 1 diabetic doesn't produce insulin. People with CFRD makes some insulin, just not enough.

There is also evidence that some people will CF develop insulin resistance, similar to Type 2 diabetes. The cause of this is not quite known, but is likely a combination of absorption issues, our other medications and just our bodies constantly being in "fight" mode to combat the chronic infection we have going on in our lungs. Our bodies naturally produce steroids when in "fight" mode. This is what gives us that jolt of energy and courage we need when we are threatened. Steroids not only cause your blood sugar to rise but they also makes us respond less to the insulin that should be lowering the sugar. Hundreds of years ago, this biological response was very helpful for fighting off wild animals! Unfortunately, for me and others living with cystic fibrosis in the 21st century, it is very unhelpful. Underlying infections are seen as a threat so our brains are pretty much always in fight mode and it can have very negative effects on our bodies ability to properly use insulin, which we aren't making enough of to begin with!

This strange combination of both type 1 and type 2 characteristics can make CFRD very, very difficult to manage. I have no way of knowing how much insulin my body will produce on its own or how much resistance I will have on any given day. I could eat the exact same food and take the exact same dose of insulin three days in a row, and each day end up with three different outcomes. One day it might be just the right amount and my blood sugar stays stable, whereas the next day it was too little insulin and I end up with a high blood sugar that takes hours to correct, and the third day I could end up with too much insulin and then I'm chugging coca cola to keep from passing out! Couple all of that with the fact that with CF, I struggle to gain or even maintain my weight and I am encouraged to eat AS MUCH as possible, AS OFTEN as possible, and it is a recipe for disaster. A high carb diet is critical towards maintaining my nutritional status, which has a direct effect maintaining my lung function. You know what comes with eating a lot of carbs? A lot of insulin. On average, I eat 6-8 times a day. Before I got my insulin pump, I was having to give myself a shot for every single one of those. That's a lot of shots, and a lot of opportunities for my pancreas and my cells to not do their job and not make/misuse that insulin! Forget trying to hit a moving target, most days I feel like I wasn't even given a gun.. or bullets... or a target for that matter.

I was diagnosed with diabetes 11 years ago and for the last 8 years, I've had an insulin pump, which has definitely made things easier. I can program my pump to give me as little at 0.05 of a unit (for reference, a unit is equal to one ML, aka less than a drop) and I can program it to deliver insulin over an extended time period. This gives me much more control over my blood sugar, while allowing me to avoid giving myself 5-8 shots per day. I still use a needle to place my insulin pump insertion site, but one site lasts 3-4 days before needing to be replaced so that is way less needles going into my skin. Also, pumps help with calculating proper doses because it's using a computer to process all the ratio. You just have to tell it your total carbs and it knows your formulas (prescribed by your doctor) so it figures out your total dose. For people, who like me, don't do math, this is super convenient.

In the recent years, another huge resource for me trying to manage my diabetes has been my Continuous Glucose Monitor (CGM). A CGM is a relatively newer tool for diabetes that involves placing a small sensor on your skin to continuously monitor your blood sugar (hence the name, ha). The sensor checks your blood sugar every five minutes and then communications with a small receiver to show you trends as they are happening. This allows you to see if your blood sugar is going to high or too low before it happens, so you can counter it with either more insulin or a high sugar snack. Some of the newer models are able to communicate directly to your insulin pump or to your smart phone, so you don't even have to carry the receiver around. Unfortunately for me, this critical piece of equipment is the very same one that my health insurance company believes is only necessary for type 1 diabetics. I got it approved initially for the receiver in 2015, but it has been an uphill battle ever since to get supplies (sensors and insertion sets) covered and I've gone as long as 11 months without getting a refill. Unfortunately for them, I've gotten really good at filing appeals and I'm pretty stubborn so I'm not going to give up until I get my way and have the resources I need to stay healthy!

So there you have it! Diabetes in a (candy-coated) nutshell. While I agree that laughter is the best medicine, it's important that we all understand the seriousness of this condition and extend compassion to those living with it. Jokes should be made only in good nature, if the individual is comfortable with it and never in a way that places blame on the individual. Misinformed or unwarranted judgements about why someone has diabetes should be made.. well, never.

*Obviously if you've gotten this far, you know that I am not a type 1 or a type 2 diabetic so I can only speak to those with so much expertise. My journey with diabetes has forced me to learn a lot about the condition as a whole so I hope that I represented the other types accurately, but if I missed anything, please let me know! I am always open to learning more about those going through similar experiences.