I am an Enneagram 3—a success-oriented, overachiever. Diabetes doesn’t fit the perfect mold I envision for my life. Driven by the image of holding it together, diabetes has left me unhinged. For years, I didn’t allow myself to grieve the loss of a body that had failed me. Diabetes comes with the stereotypes of not being able to control–not being in control–and part of my “three-ness” is that being in control brings me great joy.
I got pregnant with our first son in January 2015, and all our appointments went without hiccups. That summer, I noticed some things—I had an insatiable thirst and craving for sweets. I would eat whole watermelons and drink gallons of milk a week. I was a bridesmaid in my friend’s wedding, and I have a memory—albeit not a strong one; I was in a daze at this point—of frequenting the food and beverage table for plate upon plate of food and punch.
The following week, on a trip to the beach, I went through cases of water, and I began to worry. I hid my intrusive thoughts because I felt like I was causing what I knew deep down was wrong. One day in July, I was headed to an eye doctor appointment to get new glasses. I thought I was going blind and knew I shouldn’t even be driving myself to the appointment. I did it anyway, and I got lost in the town I’d grown up in. I called my cousin to ask where she was, and I met her at the restaurant where she was having lunch. She ordered me water, and when I told her my symptoms, her eyes grew wide. She had Type 1 diabetes and knew every sign. When she pricked my finger and tested my blood sugar on her meter, she gasped. It was so high the meter wouldn’t read it. Everything after that moment is not my memory; it’s simply what I’ve been told.
The only thing I am sure of was I couldn’t feel my son kicking in my stomach.
I sobbed all the way to the emergency room, feeling unexplainable guilt. Type 1 diabetes, definitely not gestational, hereditary, trauma-induced, would eventually have happened. My body went into DKA, diabetic ketoacidosis, which was deadly for both me and my unborn son. My mind was in a fog. Other than the last few weeks of insane sweet cravings, I had done everything by the book. How could I have let this happen?
A dietician came to my room to explain I had Type 1 Diabetes. This was not merely gestational. Type 1 runs in my family. “It was bound to show up eventually,” they told me. I sat on the cold, starched sheets grappling with the inevitable trajectory my life was about to take.
The trauma of pregnancy sent my body into a full-blown autoimmune attack. Once my blood sugars were within normal range, I decided I would control this: I would not let it steal my joy for the remaining fourteen weeks of my pregnancy–or the rest of my life. I gave myself shots of insulin. I kept a list of what I needed to do to be healthy for my son and his delivery. At 27 weeks, I found a new normal. The ebb and flow of anger and sadness was something with which I struggled, and I aimed to keep busy to hold firmly to control.
I didn’t allow myself a chance to grieve and wouldn’t for some time.
Two weeks before his due date, Ellet was born by C-section at a healthy 8 lbs 5 oz after an unsuccessful induction. As much as I yearned for a natural delivery, it wasn’t in the cards for us. His low blood sugar was normal for a baby born to a mother with diabetes. There were no complications. I spent the next year learning how to manage both life with diabetes and life with my infant son.
Before getting pregnant a second time, I suffered from chronic fatigue—something I attributed solely to life with a one-year-old who woke up numerous times a night. My mom talked me into having blood work drawn, and it turned out I had Hashimoto’s thyroid disease.
It looked like I took this in stride when in reality I was crumbling once again–reeling from another disease I would have to manage in order to live. Once I began taking medication, I felt like myself again. I also began using a tubeless insulin pump and a continuous glucose monitor, which was nearly life changing.
I could spend less time worrying about my blood sugar and more time focusing on life.
My second son was born by C-section two weeks early as well, weighing a whopping 10 lb 6 oz. I felt better equipped to take care of both myself and a newborn when Quinn arrived. During the first pregnancy I struggled to control and balance and take in the new medical info. But this time, I felt more equipped not just in experience but in working through the emotions.
I believed I was figuring out how to cope with two autoimmune diseases and being a mother of two when another piece of my body failed. This time, it was not my body that betrayed me, but a tick-borne disease called Alpha gal. I went into anaphylactic shock the summer after Quinn turned one. After several tests, my allergist told me I could no longer eat red meat because of this disease. As a person with diabetes, meat and protein were a means to balance my blood sugars.
The news of yet another diagnosis was too much, and the grief I had been outrunning finally overwhelmed me.
I will never say, “God doesn’t give you more than you can handle.” This is more than I can handle. The misconceptions surrounding diabetes rang through my ears–it was my fault or if I would just “eat right” my blood glucose would normalize–coupled with unsolicited advice became too much for me. People have told me I “just handle it so well” and I “wear such a brave face.”
The truth is underneath, I am crumpling.
When I was diagnosed with Alpha gal, I read a line from a poem by Mary Oliver called “The Uses of Sorrow”
“Someone I loved once gave me a box full of darkness. It took me years to understand that this too, was a gift.” I began doing the work, slowly and steadily.”
There is something to be said of this disease for a high-strung achiever like me: I am forced to recognize when my body says slow down. The autoimmune flare-ups happen when I try to accomplish everything on the endless to-do list. I’ve learned to accept this box full of darkness as a gift to learn to listen–to know when to stop. To know when to set boundaries. To know when to say no and stop pushing my limits in order to achieve.
The word “autoimmune” is rooted in Greek and Latin, literally meaning “free from self.” This disease brought with it a box full of darkness, while at the same time it taught me how to be free from myself–free from the constant expectations and endless cycles of ups and downs.
Two years ago, I got a tattoo on my left wrist that serves as both a medical tag and a daily reminder. The symbols, as arrows, say I am greater than my highs and lows.
I have freed myself from my own expectations.
Alex is a reader, teacher, and writer balancing life with autoimmune diseases while carving out spaces for creativity. She lives in Paris, Tennessee, with her husband and two sons. Alex teaches 9th grade English and Creative Writing. She is an Enneagram 3 who loves to put aside her to-do lists to read in her comfy chair.
You can find Alex on Instagram at @megahast.