Six realities of living with Type 1 Diabetes

Much of the general public think that diabetes is not a big deal. They don’t understand the realities and challenges of living with type 1 diabetes. Here are six things that we wish the public understood about living with this disease.

Diabetes Kill

I learned this first hand on March 17, 2000.  I held a lifeless two-year-old in my arms.  His breathing was raspy.  He was nothing but bones.  How had this happened so quickly? What was wrong?

The doctor told me my son had diabetes and was in ketoacidosis. His body was eating itself to survive and at that moment they didn’t know if he would survive. He was put in ICU and we were told that the next 12 hours would tell the tale. Thankfully he survived. Not everyone is so lucky.

Diabetes is a big deal

Diabetes care is more than just take an aspirin and call me in the morning.  It is a 24/7 job. 

For example, my child gets up and checks his blood glucose level.  One morning he was high so he gave himself more insulin and we checked to make sure all was okay with his insulin pump.  I made him breakfast and totaled the carbohydrates he would eat. Before food touched his mouth, he bolused (gave himself insulin) for the food he would eat. 

As he prepared for school, I made sure that he had the carbohydrate count for his lunch.  He will check his blood sugar levels within two hours of eating and again before he eats another meal.

There will be extra glucose checking if he is low (has too much insulin in his body). He will check before he closes his eyes at night.   I will wake through the night and check to ensure that his blood sugar levels don’t drop to deadly levels while he sleeps.  I am not making a mountain out of a mole hill.  This is what we need to do to keep him healthy.

He looks healthy because he works hard to stay that way

After almost 20 years of living with type 1 diabetes, my son is not as healthy as he is by accident.  We have worked day and night to correct, adjust, weigh, measure, and balance insulin to activity levels–basically to be a human external pancreas. There is never a break. This is his life until there is a cure.

No he will not grow out of having type 1 diabetes

Type 1 diabetes occurs when the body attacks the insulin-producing cells of the pancreas.  It is irreversible.  A low-calorie diet will not “cure” him, nor will special shoes or a magic drink.  He has an organ in his body that no longer works properly.  He will no more grow of type 1 diabetes than a person with a heart condition will grow a new heart.

Type 1 diabetes is hard on a person’s body

In one day a person with type 1 diabetes can see blood glucose levels swing from low and requiring extra food because there is too much insulin in their system to incredible highs because there has been a release of growth hormones causing them to require more insulin. 

These highs and lows wreak havoc on a person’s system.  I can watch my son lay on the couch because he is low and feels weak and later be drinking every ounce of liquid he can find because he is high and thirsty. 

This is terrifying to watch. You can only imagine what it is doing to his body.  You can feel the kidneys being damaged and so much more.  It is my job as a parent to protect him and his body and type 1 diabetes makes that task virtually impossible.

We need a cure for type 1 diabetes

Type 1 diabetes takes a toll on everyone involved.  It takes a physical toll on my son as I mentioned. It takes an emotional toll on him as well.

When he was younger, he would watch his friends play, unable to participate because he was having to sit quietly and wait for his body to recover from a low blood glucose level.  Unlike the average person, before my son can eat he must first check his blood glucose level, count the carbohydrates in his meal and then inject insulin in his system. 

Type 1 diabetes can take a toll on loved ones as well. Siblings may complain about the time spent with the child with diabetes.  Parents can become exhausted checking on the child at all hours and worrying about their child’s care.

There is a huge financial burden and worry.  Diabetes care costs.  Test strips are close to a dollar each and we use at least 10 per day.  There is the cost of insulin, insulin pumps, syringes, infusion sets and cartridges.  If you are lucky you can afford a continuous glucose monitoring system that will provide a realtime guide of blood glucose level trends but the sensors often cost too much for those of us without insurance.

That was only six things that we wish the general public knew about living with type 1 diabetes. There are so many other things that we wish that they knew. 

Diabetes is terribly misunderstood.  Technology has increased the visibility of the disease but the public still does not know the difference between a cell phone and an insulin pump. With continued awareness initiatives and talks about the insulin crisis in the United States, hopefully, more people will begin to understand the realities of living with type 1 diabetes.