I’ve lived with type 1 diabetes for 20 years. I was diagnosed in the sixth grade, and it was a long and arduous journey until I learned how to fully embrace my illness.
It’s a passion of mine to raise awareness about living with type 1 diabetes and its emotional toll. Life with an invisible illness can be an emotional roller coaster, and it’s fairly common to become burnt out from the required daily demands.
Most people don’t understand the true extent of life with diabetes and the constant attention you need to give it to survive. People with diabetes can do everything “right” and still experience hypoglycemia and hyperglycemia.
When I was younger, I experienced an episode of hypoglycemia that made me reevaluate how I approached my diagnosis.
The lowest blood sugar I ever experienced was when I was a freshman in high school. My level was low enough to prevent me from having much recollection of the experience, but it was relayed to me by my mom.
All I remember was waking up and feeling sticky all over and extremely weak. My mom was sitting on the edge of my bed, and I asked her why my face, hair, and sheets were sticky. She explained that she had come to check on me since I wasn’t awake and getting ready for school as I normally would be.
She came upstairs, heard my alarm clock, and called my name. When I didn’t respond, she came into my room and told me it was time to get up. I just mumbled in response.
At first, she thought I was just really tired but quickly realized my blood sugar must be severely low. She ran downstairs, grabbed honey and a glucagon pen, came back to my room, and started rubbing the honey into my gums.
According to her, it felt like forever until I started to form a full response. When I slowly started to become more alert, she checked my blood sugar and it was 21. She continued to give me more honey, not food, because she was afraid that I might choke.
We checked on my meter every couple of minutes and watched my blood sugar start to rise — 28, 32, 45. I believe it was around 32 when I started to regain awareness. At 40, I ate snacks I stored in my nightstand, like juice, peanut butter, and crackers.
I obviously wasn’t cognizant enough of the situation and started to insist that I had to get ready for school. As I tried to get out of bed, she forcefully told me to stay put. I wasn’t going anywhere until my blood sugar came up to a normal level.
I doubt I would have been able to even walk to the bathroom but was delirious enough to think I had the strength to do so. I thought her reaction was a little extreme and I was slightly annoyed with her the whole time. Fortunately, my level kept rising and when it was finally at 60, my mom walked me downstairs so I could eat some breakfast.
Mom called the doctor and he told us to stay home for a little while to make sure my levels were stable. After breakfast, I was at 90 and took a shower to clean the honey off of me.
When I was finished showering — being the stubborn teen I was — I still insisted on going to school. My mother reluctantly dropped me off midday.
I didn’t tell anyone about this incident. I never discussed my diabetes with anyone. When I look back, I still can’t believe I didn’t vent to my friends about the traumatic experience I’d been through.
A few friends inquired why I was late for school. I think I told them that I had a doctor’s appointment. I acted as if it was a normal day and that I didn’t have the possibility of going into a diabetic seizure, coma, or dying in my sleep from severe low blood sugar.
It took a handful of years to shake the shame and guilt I felt about my type 1 diabetes. This event opened my eyes to the truth that I needed to take diabetes more seriously.
While there wasn’t any known cause to the low, I was typically very casual in letting my numbers run somewhat high. I also didn’t pay as much attention to carb counting as I should.
I despised diabetes and resented it so much that I did everything I could to not have type 1 diabetes become a part of my identity. What teenager wants to stand out from their peers? This is the reason I wouldn’t be caught dead wearing an insulin pump.
I hid in bathrooms to test my blood sugar and do my injections for too many years to count. I had a fixed mindset, convinced that there wasn’t much I could do to manage my disease. This recent low episode changed things.
Scared about how close I came to death, I began to take more action to manage my diabetes. Seeing how terrified my parents were made me question my casual approach to my own physical well-being.
For years after, my mother couldn’t sleep soundly, often sneaking into my room in the middle of the night to make sure I was still breathing.
Type 1 diabetes can be incredibly unpredictable. I once had to reduce my long-acting insulin by five units after remaining low for an entire day, simply because I was in Bangkok and the humidity was off the charts.
It’s difficult to take the place of a human organ and it can be downright exhausting making so many decisions on a daily basis.
What I think people with type 1 diabetes often forget, and an outsider doesn’t see, is that the emotional toll of the disease so easily impacts physical well-being. We certainly feel the burden, but far too often won’t prioritize our emotional well-being. It tends to come second to the numerous physical demands of a chronic disease.
I believe part of this has to do with the shame placed on people with diabetes and the general misunderstanding of the disease. Through educating others and sharing our experiences, we can help to lessen the stigma. When we feel comfortable with ourselves, we can truly take good care of ourselves — both emotionally and physically.
Nicole is a type 1 diabetic and psoriasis warrior, born and raised in the San Francisco Bay Area. She has an MA in International Studies and works on the operations side of nonprofit. She’s also a yoga, mindfulness, and meditation teacher. It’s her passion to teach women the tools she has learned along her journey to embrace chronic illness and thrive! You can find her on Instagram at @thatveganyogi or her website Nharrington.org.