The ignored and the forgotten…

For those that have dealt with Type-1 Diabetes, first hand, they understand the severity of the disease. A split second can mean the difference between having a great day or ending up in the hospital… Especially for me lately.

Did you know that Diabetes, annually, causes more deaths than Breast Cancer and AIDS… combined? Did you know that in 2012, $285 BILLION was spent on diabetes related costs in the US? And nearly 1/10 people have diabetes? Those are stifling statistics.

Did you know that with “good” health insurance, it still costs upwards of $12,000.00/year for one person to receive treatment? That’s without complications. So if a diabetic had a $50k/year job, 20% of their income will go directly to keeping them alive… But also losing money each paycheck paying into insurance. That’s WITH insurance.

Diabetes imposes a substantial burden on the economy of the U.S. in the form of increased medical costs and indirect costs from work-related absenteeism, reduced productivity at work and at home, reduced labor force participation from chronic disability, and premature mortality (1,2). In addition to the economic burden that has been quantified, diabetes imposes high intangible costs on society in terms of reduced quality of life and pain and suffering of people with diabetes, their families, and friends.

-“Economic Costs of Diabetes in the US in 2012” – American Diabetes Association

Everything in life is more difficult for a diabetic. You need a good job to have health benefits but in this economy and with this work force and job competition, it is not only hard to find a job, especially one with benefits, it’s difficult to keep one due to the hardships incurred due to diabetes.

But ultimately, for those with diabetes, the disease can be used as a tool for forging the strongest mind earthly possible. Teaching you that though things can be overwhelmingly difficult, success is still possible with perseverance, knowledge and belief. You just can’t quit!

Even as a Diabetic myself and dealing with MANY near death experiences and close calls, I haven’t really grasped the real mortality of the disease.

A few days ago, I heard from a few friends, on separate occasions, that they had lost friends to Type-1 Diabetes. One, to a car accident, officials stated blood sugar was an issue, the other, was complications from Diabetes, not sure of the details. That blew me away. Brought me to tears… Tears for their families and the struggles they’ve endured, I’m sure wishing they could deal with the burden of diabetes for just one more day. Tears for my own family.

So why is it that Diabetes receives so little publicity? Why is it so ignored? It’s the elephant in the room that no one wants to acknowledge…

It’s one of the fastest “spreading” diseases with one of the highest death rates, yet most people don’t know much about it… at all.

Most people brush it under the rug as “Juvenile diabetes… shouldn’t have eaten so much candy as a kid,” and “You should probably eat a better diet,” “How did you get Diabetes? Eating too much sugar as a kid?”

With the daily routines, finger sticks, meal boluses, late night lows, irritable highs, doctor visits and much more; those who deal with these things understand the difficulty in this balancing act of life with diabetes. Those that don’t understand, simply think it’s a life time punishment of no desert. We can change that!

There is such a prevalence of misunderstanding, that I recall being pulled over in high school and having my car searched because the officer thought my insulin pen was… I’m not sure… Something illegal. Even after explaining that I am a Type-1 and showing him my test kit.

Another time in high school, a syringe accidentally fell out of my bag in another student’s dorm room… The housemaster saw it and confronted him… Confused, it then dawned on my friend that it must have belonged to me… Later that day, I found myself in the middle of an intervention for heroin. It took the teachers a little while to understand that I used syringes to inject insulin, not illegal drugs.

In an even stranger instance, a student had been caught with hypodermic needles that he had been using to inject Anabolic Steroids. Instead of admitting his habit, he tried to say the entire bag of huge needles actually belonged to me for insulin use.

Diabetes is even difficult for those with it to comprehend. There are countless variables that change daily life with diabetes from diet to exercise, stress to humidity and much more.

With the daily, diabetic routines, often comes with an embarrassment, shyness and downplaying of the disease. I know this because I often had these feelings throughout my upbringing. This also leads to a misunderstanding of diabetes. Because of the way many downplay the disease, people tend to overlook it’s severity.

For a number of years, I was very secretive and shy about anything diabetes related. I would slyly hide my test kit under the table or go to the bathroom to inject or test. Most people had no idea, sometimes others would see and would stare. It took me a long time to understand their curiosity and lack of understanding. The older I got, the more I tried to showcase and highlight my disease, I embraced it, openly injecting and putting people at ease with jokes and banter to help them comfortably understand. Don’t hide it, people need to know!

This, in part, has led me to starting this blog. I am hoping to spread awareness and I find, the more I write about the disease, the more I talk about it also.

Getting connected to other diabetics is very important. Diabetics must understand that there are people that understand what they are going through… You are not the only ones in this fight. Don’t be shy about your disease, look to spread awareness, positivity; educate others so one day they may be more prepared to handle a diabetic related incident.

In one of my video and text blogs, (watch here), I discuss the social psychological phenomenon titled “The Bystander Effect”. Basically, the theory suggests, that most people will not help a person in distress or even notice them until they see others doing the same.

I haven’t experienced this first hand and believe that with more awareness, we would see a decline in such events.

I remember when I was a kid at wrestling camp, another camper approached me and asked me for money to get candy because he was diabetic… The incredulous and curious child I was, I prodded him for more information. I discovered he had made it up so he could get candy… Smart kid, I guess, but I told him he shouldn’t deceive people with such a serious disease, one that I had. He proceeded to call me a “freak” and then walked away. Just an interesting encounter I recalled… Where did he learn about diabetes? A sibling? A parent? School?

What more can be done to help spread information and awareness about Type-1 Diabetes? Why doesn’t it receive more attention despite the millions of people suffering with more and more others being diagnosed?

I will tell you where. It starts with you. Whether you have diabetes or not, it has likely affected you or someone close to you.

Diabetics: Don’t be afraid to talk about your disease, let it be known, educate friends, pupils, coworkers, family, teammates, even strangers. Use any means possible to help make people understand a little bit more about diabetes. In the least, for your safety, train those close to you about how to react to a diabetic emergency. But most importantly… Don’t lose hope. A cure is out there, maybe it’s prevention, maybe it’s changing the way we currently operate… But it’s out there. Look to be part of the drive toward putting a stop to this disease. There are other people out there that are also dealing with what you are going through. Connect with them, connect with others. Keep fighting.

Non-Diabetics: It’s not possible for you to understand what diabetics go through on a daily basis. It is important that you understand that. Educate yourself, it may save a life. Reach out to those you know struggling with this, sometimes just being there can save a life too.

I learn more about diabetes and myself every single day with the help of everyone around me. Thanks to all those who have supported me, especially my family, parents and wife. There are countless people that have literally saved my life over the years because they were equipped with the knowledge to do so at the time. For that, I am eternally grateful.

“You’ll never meet a strong person with an easy past.”

Thanks for reading!

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The ignored and the forgotten…