In the Beginning
because you have to start somewhere
Welcome to the first post of The Type 1 Diabetes Dilemma. A combination of essays about my past and present life with type 1 diabetes (T1D), what I’ve learned and community.
I’ve lived 30+ years with T1D, and though management is important, and the numbers—always the numbers!—are not the focus here.
The focus is what’s often missing. Namely nurturing and fortifying the mental and emotional resilience needed for living with a condition affected by the dynamic forces that shape our lives—everything from exercise, food, illness and more. T1D needs consistent attention, and since we’re human, we’re not consistent and neither is Life. We make mistakes AND we can learn to flourish as we navigate change.1 That’s not just about living with T1D, it’s about living—period.
It’s hard to pinpoint a beginning but I have to start somewhere. I was going to start with the diagnosis, but that’s not the true beginning of my diabetes story. The beginning I often forget is my second pregnancy when I was “borderline” for gestational diabetes. Blood work six months after delivery was normal. No diabetes! And that was it. No more follow ups.
But the year my youngest turned two things began to change. Or at least began changing in ways I noticed. I was peeing a lot. I was so tired, bone tired even after marathon naps. I was hungry and ate more than usual, but despite that I lost weight.2
For months I suspected something was amiss, but I was a mom to two active boys—wasn’t that it? But still… it was like hearing a few notes of a song but not remembering the title or lyrics.
Why didn’t I connect the dots?
First, I was a woman with a history of bulimia, an eating disorder defined by binging and purging. Second, besides being in my early thirties with two active boys under six.
So at the time of diagnosis in 1992, I’d been married for eight years and was ten years in recovery from bulimia. I was eating and exercising in a way that felt balanced, but despite the changes—excessive peeing and fatigue were not fun— eating whenever and whatever I wanted, even dessert, while still loosing weight was a dream come true. And despite concerned friends saying, You look gaunt. I heard (and saw) thin.
That aspect of diet culture—the imperative to be thin—still held sway. That and my failing marriage distracted me for almost a year.
Epiphany
One day I was alone in the kitchen, utterly exhausted. I drank my umpteenth glass of water and paused. My mouth was still as dry as the Sahara.
Then I remembered. These were the symptoms of diabetes. I knew the symptoms because of my experience with gestational diabetes, and also because I had apprenticed with a homebirth midwife and been a postpartum doula. These symptoms sounded like diabetes. And they were.
In that moment everything coalesced. I clearly saw what was happening and could not unsee it.
At the end of every post I’ll highlight something I’ve learned and ask you to share something in the comments. I hope you will!
I Learned…
Not only to listen to my gut, but to act on feelings and intuition when they arise, even when I feel silly. I can tell you it’s an ongoing process.
Please share…
🔎🔎 In the comments below please share… Did you ever have an “aha” moment about your type 1 diabetes? 🔎🔎
Identities
I write from the perspective of an older, white, cisgender woman, of mostly northern European descent. Those identities increase my access to healthcare, education and many other supports that contribute to my mental and emotional health and wellbeing. I am dedicated to equity in all forms, especially health equity, and to ending stigma. When I make mistakes I seek to repair harm. I realize intentions don’t mitigate harm though a sincere attempt to make amends may be accepted.
Coaching
I’m a life coach who helps folks with T1D attend to their mental, emotional and spiritual health. See my coaching page for more info.
This is my second Substack. I also publish Glorious Ordinary
Flourish is a term used by my colleague and friend, Riva Greenberg, an author, inspirational speaker and tireless advocate for flourishing with T1D.
In case you don’t know… people with T1D do not produce enough insulin, the hormonal “key” that opens the cell to let glucose (energy) enter. Glucose then circulates in the blood stream and the kidneys do their best to pee it out, causing excessive urination. The body turns to burning fat for energy (unsustainable in that context), causing weight loss and fatigue.