It’s officially November 1st! Halloween is over and behind us and the holidays are only a few short weeks away. However, the change in the calendar also represents a transition into a month where those of us involved in the diabetes community try to spread awareness and advocate on behalf of those living with T1D. Welcome to Diabetes Awareness Month!
I woke up this morning and shortly after turning off my alarm, opened my Facebook app to see what had been stirring while I was sleeping. I have been looking forward to the start of November more so than ever now that I feel I have found my voice within our tribe of T1’s, T2’s, and T3’s (those who DON’T have diabetes themselves, but love or support someone who does). Although my primary focus of advocacy and awareness happens to center around type 1 (since there are so many misconceptions and also because it’s the type I live with personally), I think it’s important for us to recognize the commonalities that both types share, as the hurdles and obstacles we face can often be very similar, if not the same!
I read a fact not too long ago that out of the 29 million Americans living with “diabetes”, less than 5% of those people have type 1. LESS THAN 5% OF 29 MILLION! When you are faced with that fact alone, it is easy to see why so many people are just unaware and oblivious to the intricacies and complexities that make T1D unique. I like to help empower and educate about all types of diabetes, especially due to my involvement with the DiabetesSisters, but from time to time it’s nice to make the type I live with my primary focus.
I’d like to kick off this month by sharing a few things about T1D that I wish the rest of the “non-D” world would have a better understanding of…
T1D is NOT preventable.
There is nothing that anyone living with type 1 diabetes could have done to stop this from happening to them. There is no vaccine available (yet) and there are no preventative methods or actions to be taken in order to “lessen the chances” or to avoid it entirely.
T1D is NOT contagious.
You cannot “catch” diabetes. You’d think this would be fairly obvious, but you would be surprised by how many people have NO idea that diabetes is NOT contagious. Seems ridiculous right? Wrong. One time I read a funny story online about a boy who, concerned for his own well-being, went to his doctor after learning that a girl he had kissed had type 1. I kid you not.
T1D is NOT brought on by excess sugar intake.
Can we all agree right now that eating “too much” sugar DOES NOT cause T1D… AND to go further with that, it also isn’t necessarily the thing that causes someone’s type 2 diabetes! Sure, it CERTAINLY can be a contributing factor for SOME people’s type 2 diabetes, but there is no exact formula or process to acquiring T2D. I know some folks who have always eaten pretty sensibly and incorporated exercise into their lives long before their type 2 diagnosis – and here they are living with type 2! Also, sidenote: making jokes surrounding diabetes and sugar is not funny. If you wouldn’t make a joke about cancer or multiple sclerosis, why is it okay to poke fun at an ignorant, misconception and myth like eating too much sugar causes T1D?
T1D is NOT caused by weight or lifestyle choices.
Type 1 is not caused by being fat or lazy. Sure, some people who have type 1 diabetes ARE overweight and inactive, but that is unrelated to their autoimmune T1D diagnosis.
T1D is NOT curable.
If I had a dime for every time I’ve seen that eating okra or incorporating more cinnamon into my life could “cure my diabetes”, I would be a very rich girl. Type 1 diabetes CANNOT be cured… yet. There are plenty of people out there raising money and doing science in hopes of finding a solution to this problem, but as of right now, I am stuck with my diabetes. It’s not going ANYWHERE. It should also be pointed out that, although there are advancements in technology on the horizon, unless I am 100% making my own insulin, without the need for something implanted into my body, and without the need for immune suppressant drugs, I will in NO WAY consider myself to be cured. A “cure” to me would provide me with the same results as if I was granted a wish by a genie to not have T1D anymore.
T1D does NOT limit your potential as a human being.
People living with type 1 diabetes can do ANYTHING that people without diabetes can do, except make their own insulin. That is all.
All of our bodies need insulin to survive. When you have type 1 diabetes, your pancreas (a really important organ next to your stomach) no longer produces this essential hormone. It is my understanding that it is my own body’s immune system that, confused by a sneaky, tricky virus, attacked the beta cells within my pancreas. Without these cells, insulin cannot be made.
Now I am forced to check my blood sugar by means of a finger stick (to draw a drop of blood) and a blood glucose meter. I also from time to time utilize a CGM (Continuous Glucose Monitor). This neat piece of tech is inserted into my skin and takes a reading every five minutes, which is promptly delivered to a screen on my phone, my pump, or on the CGM receiver device. I STILL have to check my blood sugar with ACTUAL blood at least twice daily in order to calibrate the CGM.
One thing I wish people who are without a clue would realize is that checking my blood sugar and taking insulin are two entirely different acts. Whether you use an insulin pump and need to change your site every few days or you take multiple daily injections (MDI), you still need to prick your finger first BEFORE you determine and administer the right dosage.
I also wish outsiders would understand that even with the CGM technology, there is still A LOT of effort on my part. This includes (but is not limited to) using mathematical equations and my own personal ratios to determine how much insulin to give, while simultaneously factoring things in like exercise, stress, monthly hormonal fluctuations, even the damn weather! I’m walking around looking all regular and normal, but in reality, I am a scientist on a mission for survival! There are constantly instances where the figurative monkey wrench is thrown into my plans or vision. If I’ve learned anything as a T1D, it is to embrace the unpredictable mess that your life can sometimes be and find strategies to help yourself during those tough times of troubleshooting. Sometimes I get bummed out when I think people maybe forget or don’t understand just how much work I actually do. T1D is a full time job! They see my insulin pump and think “Oh well she’s got one of those things! She’s all good!” I wish they knew that I’ve had to learn a lot and remain extra vigilant even while using the latest in diabetes technology. Isn’t it amazing how many people think our pumps are essentially the artificial pancreas we’ve all been (and still are) waiting for? They just ASSUME we do nothing but just plug ourselves in and hit the road running. I don’t need a party or parade or even a pat on the back, but sometimes it’s hard to not feel recognized for all of my efforts.
Lastly, I wish there was a greater understanding that T1D diabetes can be diagnosed at ANY age. Whether you’re 6 or 60 years old – it doesn’t discriminate! Type 1 diabetes knows no age. There are also people out there who are “surgical type 1 diabetics” and they deserve just as much recognition as those who were diagnosed after an autoimmune mishap! A dear friend of mine was diagnosed in her 50’s after suffering greatly from pancreatitis for years. She had surgery to have her pancreas removed and the rest is history! Sure, she didn’t have the same experience as me, but we live a very similar life both being type 1. I love our friendship for so many reasons, but part of it is because her personal diabetes journey brought me a greater understanding that no two diabetics have the same story.
I’m looking forward to this month and all the wonderful things it will bring to the diabetes community and beyond! Happy Diabetes Awareness Month to you all. Enjoy advocating and spreading the awareness that we truly need so much!
What Sarah Said