Type 1 Diabetes: Welcome to the 1%. (Rant Version)

This piece was previously bookmarked as a page reference on the blog in order to enlighten those readers who may not know much about type one diabetes.  After “word vomiting” all of my pent up emotions about misconceptions regarding the various types of diabetes, I realized that I needed a simplified, statistical page reference on the blog, and that I should retire the gushy feelings for a blog post.  So, here is the recycled “Rant Version” of the 1% for those of you looking for some diabetic attitude to read with your morning coffee.

In 2012, the population of America was almost 314 million people.  According to the Juvenile Diabetes Research Foundation (JDRF), there are about 3 million type one diabetics in the United States.  Crunching a few numbers illustrates that type one diabetics are a rare breed indeed; we comprise less than one percent of the U.S. population. 

If you are not type 1 diabetic or a close family member or friend to a type one diabetic, you may think that your education from the mainstream media in regards to diabetes is sufficient.  Newsflash: it’s not.  Diabetes is incredibly complex, and many reports and articles, quite frankly, miss the mark when portraying the disease.  I am eagerly working towards a Master of Science in healthcare administration degree, and my studies have included taking public health courses at the graduate level.  While I do not officially have those initials tacked to the end of my name quite yet (I can see it now- Very Light, No Sugar, Master of Science- okay, sorry!), I do know a thing or two about chronic disease due to my education.  I also have 23 years of personal experience as a type one diabetic, and I have a family member with diabetes as well.  In addition, my fulltime job in a healthcare-related field has allowed me to observe other diabetics’ stories.  If that unofficial transcript does not make you trust my judgment in discussing chronic illness, allow me five minutes to explain diabetes in simplified terms for this epic rant of a blog post, please.

Diabetes comes in many shapes and sizes.  It affects the young, the middle aged, and the old; the overweight and the thin; the black, white, purple, green, yellow, blue, and so on.  It places an unjust burden on people who are not only diabetics.  They are also parents, grandparents, grandkids, siblings, daughters, sons, cousins, friends, coworkers, race car drivers, actors, entrepreneurs, advocates, and much more.  Most importantly, they are all human beings who did nothing to “deserve” the amount of suffering that they endure each day as if it were some sort of punishment meted out in a courtroom, with society residing as the judge.

Some women encounter gestational diabetes with pregnancy.  LADA, latent autoimmune diabetes of adults, is similar to type 1 diabetes but with a later onset in life, in layman’s terms.  The diabetes that you often see in the media is type 2 diabetes.  Type 2 diabetes is characterized by insulin resistance and difficulties metabolizing glucose, but the body still produces some insulin.  According to U.S. News, one in eight Americans is diagnosed with type 2 diabetes, and evidence shows that many others go undiagnosed.  Clearly, these figures do not represent 1% of the population, as type 2 diabetes is quite common in our country.

I am type 1 diabetic, not type 2 diabetic; I can only speak from my own perspective.  However, I am going to defend the type 2’s for a moment here.  They get a bad reputation in the media, which critiques them as being overweight and “lazy” about their health.  While lifestyle may play a role in some cases of type 2 diabetes, it is not the only factor.  Genetics, the environment, and many other issues come into play to set the stage for the onset of type 2 diabetes.  The next time you catch yourself blaming a type 2 diabetic for his or her health situation, take a second to realize what you are really doing: rationalizing.

Society is prone to this.  It is easier to blame the rape victim for drinking too much or wearing a short skirt than it is to mentally process that one’s mother or sister could just as likely be that randomly-selected victim.  It is also easier to blame food for type 2 diabetes than it is to admit that we have many barriers to enjoying healthy lives in our society today.  Have you never had a piece of cake in your life?  How about a potato?  Potatoes carry a much larger load of carbohydrates than a half of a cup of ice cream does, for example.  Carbohydrates raise blood sugar.  If diabetes was so cut and dry, as in “Eat too much cake and you will get diabetes,” well, we would all be diabetic.  Give everyone a break, please!

Type 1 diabetes is much more rare, as evidenced by the 1% fact previously discussed.  It is caused by an autoimmune attack on pancreatic islet cells, causing insulin production to short circuit and eventually to stop altogether.  Type 1 diabetes is not caused by ingesting too many cookies.  Research indicates that the “perfect storm” of factors, to include genetic, viral, and environmental components, may be responsible for type 1 diabetes.  No matter the cause, diabetes sucks!  What also sucks is hearing that it is your fault in society’s eyes on a regular basis.  Paula Deen diabetes jokes and the like are thrown in our faces day in and day out.  When you have endured hundreds of thousands of needles to manage a disease that never rests over the majority of your lifetime, it is beyond frustrating to have diabetes minimized by society in such a fashion.

As I stated, my personal experience involves type 1 diabetes, so that is what I will describe here.  The goodness that stems from diabetes is seen in the wonderful people that you meet along the road in your health care management.  The other diabetics in the online community, patients at the diabetes clinics who understand exactly what you go through, doctors and nurses who dry your tears on the bad days, and friends and family who are always willing to lend a hand whenever they can- these are the people with whom diabetes has blessed me and other diabetics; they are the pillars of strength whom we rely on.

But the reality is that no matter how strong our army is right now, diabetes is the monster that never pauses to catch its breath.  Every bite of food consumed can impact a type 1 diabetic’s blood glucose.  Those 5 chips I had at the office party?  Yup, they will impact my blood sugar, sometimes at dangerous levels.  That short walk to my car after a party?  Yup, now my blood sugar is dropping.  Traveling?  Darn, I need to pack an entire suitcase full of medical devices and medication to sustain my life for a few weeks.  If that luggage is stolen at the airport, my life is immediately endangered.

You think that I should “control” my diabetes better?  Every day we wake up fighting a constant battle.  Insulin is not a miracle drug; it is not a “one size fits all” pill.  Insulin dosing for type one diabetics is an educated guess taken subcutaneously each time around.  What works on Monday may completely backfire on Tuesday.  Maybe you have a head cold coming on and your liver is furiously releasing sugar to fight the illness?  Now you may have to triple your insulin dose.  But oh wait, that was too much and now your blood sugar is crashing.  There is no crystal ball that tells us the perfect insulin dose to take at this point in time.  It is a trial and error dosing system.  And once you find something that works, diabetes changes its mind within a few days.

These are the calculations that never go away; they are sometimes minute to minute or hour to hour, and they are definitely day to day.  Until there is a cure I will never put a bite of food in my mouth without thinking over such factors to determine an insulin dose.  This disease is the farthest thing from a joke.  Trust me, we all wish that it were as funny and as manageable as the media makes it out to be.  I wish with every ounce of my soul that a cure would take away this never ending struggle for the parents of kids with type one diabetes, for the non-diabetic siblings who do not receive as much attention as their diabetic counterparts, for the toddler screaming in pain at injection time, for the young adults struggling to keep brave faces while showing up to work every day to deal with the normal stressors of life on top of the diabetes headaches.

Please, please take a moment to educate yourselves about diabetes and to share this knowledge with others.  Until we change our mentality about diabetes in this country, diabetes will continue to plague us, to take loved ones from us, and to be a mental and physical burden for so many people who do not deserve it.  The good news is that it is within our power to change this public perception.  It starts with each and every one of us.  Let’s get to work.

Thank you