What Dealing with an Invisible Illness Like Diabetes is REALLY Like

Patient Expert

After reading Riva Greenberg's blog “The Invisibility of Type 1 Diabetes” I asked Riva if I could carry a thread of experience and support. She gave me an overwhelming message of support. Thank you, Riva!

In her blog she writes: "Living with type 1 diabetes is neither a fire walk nor a piece of cake. Pardon the pun. But often it feels like a fire walk. Every day and night watching your blood sugar to keep it in a safe place. Calculating and guessing all day long how everything you do will affect your immediate and long-term survival. Everyone seems to think these calculations are effortless. You do it every day. You’ve done it a million times. But it’s not effortless. You start all over every day. Always guessing."

Living with type 1 diabetes is not obvious to people not in the know.  We just look like any other person. We can eat like anyone else. And when trouble arises, we usually handle a low blood glucose without any fanfare. But behind that place of ease, in the midst of serious consequence, is years of experience. We've calculated the carbs a million times, but no two days are the same.

In September, I celebrated my 51st birthday, and in March 2016 I will have lived with type 1 diabetes for 47 years. I have few memories of living without diabetes. For me, a glance at a plate of food is less about admiring the food, but more a carb count to know how much insulin I need for the meal.

Carbs aren’t the enemy, counting them and miscalculating is! Routine is everything, so if you plan on stepping out of your routine, you have to use more concentration and negotiation with carb counting.

Lately, my nightly routine has become a problem. If I miscalculate my carbs then my evening dose of insulin causes a ripple effect between 1am and 3am with a screaming low.

Being married to a routine means that I hate eating outside that routine, but treating a low leaves you no choice but to do that.

I’m also hitting a different time of life and my diabetes management - that has been the same for a couple decades - is changing. Since turning 50, I’ve noticed my insulin sensitivity is less clear to me. Highs and lows can strike like nothing I’ve experienced in the past. The highs are higher and the lows more extreme. And the lows are what scare me.

A couple of months ago, I came home from a dinner with friends. My blood sugar had been stubbornly high, all day. It was after midnight and my last bolus of 2 units had been at 8pm. Just as I got into bed and started to drift off, I sprang up and raced to the kitchen in the dark. My instincts were the only thing guiding me. My dexcom was beeping 3 loud beeps. I broke into a can of Pellegrino, Swedish fish, glucose tabs and nothing was working.  The meter was reading 37 and my Dexcom was showing an arrow straight down.

I’ve had lows before, but this one felt different. It attacked my brain differently and my anxiety shot threw the roof. I called my husband for help and he came running. He sat with me for an hour - his hand on the glucagon, and two bath towels for my profuse sweat that was dripping onto the floor. He, continually, prompted me to drink and eat. But an hour later, the meter only wobbled between 29 and 35.

It finally reached 40, but suddenly my blood sugar dipped again and with it my speech, and any ability to think for myself was seriously impaired. With my eyes looking down at the floor, body slumping forward and sweat dripping out of every pore, I asked him to call 911. For 46 years, I’ve never felt this close to catastrophe.

As my husband talked to 911, I started to feel the shift in my blood sugar, then very quickly, my brain function started to improve and the sweat was shifting to chills. We called off 911 sending an ambulance, and within 20 minutes I was snuggled back in bed wondering what the hell just happened.

Diabetes is really only visible me. It’s takes vigilance and effort to the point of exhaustion, but no one knows this. Most of my type 1 friends work equally as hard to not burden others, and this helps to make diabetes invisible.

So now is a good time to change that.  Talk about it. Raise awareness and push friends and family to learn about type 1 diabetes.