I was Afraid to Go to Sleep and Not Wake Up


Editor’s Note: *Trigger Warning: Death* The author of this article passed away at the end of 2018. In appreciative memory of Erin, the Beyond Type 1 editorial team has decided to keep this very relevant personal story published.

I would have never thought that something as simple as going to bed would be enough to render me sleepless or to keep me awake night after night, for hours on end. For years I was having constant panic and anxiety attacks before bed; I’d stopped sleeping, then purposely began running my blood sugar levels dangerously high because I was so terrified that I wasn’t going to wake up. In November 2015, I was admitted to a mental health hospital because diabetes was wrecking that much havoc on my life that I simply wasn’t coping—I’d stopped testing and stopped injecting. I was still having constant anxiety attacks before bed and I’d missed all exams throughout the year at university. This has been persistently ongoing for three years—a terror to sleep and the knowledge that I very well may not wake up because of what had happened in the past.

In the eight years that I have been living with this disease, I have had eight near death experiences; I have been admitted to hospital countless times; I have spent seven days in an intensive care unit as my body fought to kill me and my medical team fought to keep me alive. My blood sugar has dropped low enough to cause me to seize, to render me unconscious or to keep me on the brink of death so many times that I have lost count. I have had so many seizures that I was eventually referred to a neurologist who misdiagnosed me with epilepsy.

I was told for years that teenagers will have a diabetes burnout—I would laugh or scoff in disbelief because why would somebody not look after themselves when they know what diabetes can do to them? I’m sure that we’ve all heard that for somebody with type 1 diabetes, the risk of mental health problems is up to four times higher. But this all seemed ridiculous—the first time I heard this, I’d just been diagnosed and I immediately sneered, because diabetes wasn’t that influential—but it’s a disease that is unbelievably dominant in life, and a burnout and mental health problems do generally go hand in hand.

Going through a burnout and as a result being diagnosed with depression and anxiety were my lowest point, but it’s all about honesty. My parents, my diabetes team nor my psychologists saw the warning signs because I’d become a professional liar. I’d mastered the art of fake tests and even figured out a way to put fake tests in my tester so that they would be downloaded from my tester at hospital check-ups to prevent them questioning continually perfect levels written down whilst still having a less-than-perfect HBA1c; I went off my pump two years ago to ensure that there was no evidence of what was happening on a day to day basis. In my mind this was the best way to keep me out of hospital, and I wish that I had taken enough of an interest in myself a couple of months ago to consider the potential consequences of not caring.

Thanks to coping strategies, many follow ups and my diabetes team sitting down and working through this phase of my life together with no secrets nor lies, I’m overcoming it. And that’s the best part—a burnout is very real and it has the power to be debilitating, but it’s conquerable. Mum and Dad have taken so much out of their life for the past seven years and I owe it to both them and myself to not let their care be in vain. Everyone wants to grow old in perfect health and not have to worry about potential amputations or kidney disease, or going blind. I’ve begun ritual tests up to nine times a day once more, and my next hospital appointment is to begin the transition back to being a pumper. As Og Mandino once said, “If I persist long enough, I will win.”

Read My Balancing Act: Overcoming Type 1 Anxiety by Embracing Inner Peace by Alexi Melvin.

Learn more about the importance of mental health HERE.

WRITTEN BY Erin Gold, POSTED 03/30/16, UPDATED 09/25/22

Diagnosed with type 1 diabetes at age 11, Erin went to university in Brisbane, Australia. She was captain of her netball team, a childcare educator, a waitress, a contributor to a blog, and worked in a bookstore, all while in college. She wrote this piece for Beyond Type 1 in March 2016. She passed away at the end of 2018.