Reflections: 49 years living with type 1 diabetes

“Happy anniversary” the husband said, walking into the kitchen where I was making my morning coffee. No, this isn’t our anniversary; this is my anniversary: 49 years with type 1 diabetes (T1D).

How do I feel? Reflective. So much has changed, so much hasn’t: note the finger prick above. Yes, I do use a continuous glucose monitor – Dexcom G6 – but today is the first day of a new sensor session and I had to do an ordinary finger prick while the sensor was warming up.

Diagnosed at 18, 1972

Having diabetes 49 years I often say I benefit from “Historical Gratitude.” Over these five decades, we have so much more information, better, faster, less peaky insulins, extraordinary tech and the bonding and support of online communities. I count all as blessings.

My early days with T1D consisted of originally being wrongly diagnosed – with type 2 (after all I was 18, not 8), urine stix to get a murky blood sugar picture that I’ve since learned was four hours old, and I’d get my blood sugar checked at a lab twice a year (I know, laughable, right? Glucometers would not come out commercially until 1982). The only guidance I had was a ‘diabetic diet,’ that instructed me not to eat candy bars, but I could pile my plate with potatoes or pizza (why not both?), and the commandment to take one insulin injection a day at 8 AM with a prescribed amount of insulin.

I’m sure the first decade living with diabetes my blood sugar was always around 200 mg/dl, because that’s what it always was when I first got my brick-sized glucometer. It required two minutes count down time and a 1/4 cup of blood on the strip. (Well, exaggerating slightly). Yes, historical gratitude.

I could never, during my first few decades with diabetes, have envisioned how this journey would go. I had no thought to write about diabetes, lecture about diabetes, give workshops to health professionals about diabetes. No, indeed. I barely spoke of my diabetes, to anyone. I didn’t know anyone with diabetes and I didn’t think anyone could understand the micro-management type 1 diabetes requires.

It wasn’t until I was thirty-eight years old that I began to let a few people in. That was largely prompted by an ex-boyfriend who, when I woke up in the middle of the night in his flat in London with low blood sugar, he rolled over and went back to sleep on me.

I groped my way through his darkened kitchen (certainly I wouldn’t turn on the light and disturb him, rather I should die of hypoglycemia), until I located a tin of shortbread cookies and sat on the floor, still in the dark, eating them. That was a defining moment: I agreed with myself that my diabetes was a part of me and deserved respect – and yes, we got rid of the boyfriend.

It was only when I was forty-eight years old that a confluence of events turned me in the direction of making diabetes my work. After 25 years in advertising and marketing I lost my job; the company went bankrupt. I also went to a diabetes educator for the first time after having diabetes for 32 years. I was getting married that year and now my health was important to someone besides me. I told my fiancé he should reconsider his decision to marry me as I couldn’t guarantee him an easy journey given my diabetes, but that same man who hugged me in the kitchen this morning said he wouldn’t consider such a thing. Funny, twenty years later he’s not just my life partner, but often my work partner.

The Dutch husband

I began this career interviewing people with diabetes to hear their story. Then I began writing books, then articles, including seven years on HuffPost. Then I zig zagged for ten years across the country speaking to fellow people with diabetes as a peer-mentor. Then I began to be invited to speak at conferences.

Each year I would say, “I’m in the first year of my twenty year overnight success,” “I’m in the fourth year of my twenty year overnight success,” “I’m in the ninth year of my twenty year overnight success.” Well, you get the idea. 2021 marks the eighteenth year of my twenty year overnight success. Apparently only two to go.

I didn’t set out with clear objectives when I began this diabetes work journey. It was actually the ever-supportive husband who said, “Why don’t you write about living with diabetes since you’re a writer,” and well, that set my boat out to sea, in the best way. I think my inclination to connect with people, to want to hear their stories and give back something of value made speaking on stages natural for me who grew up oh, so, shy.

I haven’t any regrets. I adore this rich and generous community of fellow patient advocates and health professionals – and I’m not done. Right now I’m working to help people with diabetes ‘let themselves off the hook’ by sharing how, through the lens of neurobiology and complexity science, we cannot “control” our blood sugar. It’s almost arrogant to even think we can if you consider the body’s countless hidden processes and life’s unpredictability and uncertainty.

When I share this with people who have diabetes they tell me they feel liberated. Since I believe the relationship between patient and health professional is foundational to doing well with diabetes, I am sharing this understanding also with those who treat us. It is far better to develop skills to succeed with reality than judge yourself a failure trying to do the impossible, and then give up.

As for the personal journey with type 1 diabetes, frankly, at this point I don’t know who I’d be without it. That doesn’t mean I don’t welcome a cure. But while diabetes doesn’t define me, as many say, it has shaped me. It’s made me healthier as I take good care of my eating, exercise and stress, probably made me more compassionate, definitely made me more brave and bold, and fulfilled my early desire to help people believe in themselves – I just didn’t know when I was twelve, writing that in my diary, that it would have anything to do with diabetes.

I recently found an excerpt from a letter I was asked to write last year to my diabetes from 48 years out:

Dear Diabetes, 
I wish I could go back 48 years! I’d tell that doctor who told me all the horrible things you’d bring me what’s happened. He scared me half to death but we’ve become good friends. Can you be a pain in the butt? You bet.

But I know taking care of you has kept me healthier. You’ve given me an incredible career writing books and articles and standing on stages across the world inspiring people. You sure want a lot of attention, but you can bring something positive into our life too. I wish I could tell that doctor that.

Amen. Three years ago I applied for my 50 year medal from the Joslin Diabetes Center and I told the husband where we’re going to dinner to celebrate. Ah, dining out. I have historical gratitude for that too.

12 thoughts on “Reflections: 49 years living with type 1 diabetes

    • My gosh, Gretchen, I haven’t a clue. I certainly know I took NPH and something else along the way, but I wouldn’t know the first few years what I took. Of course the very first few years after bringing down my blood sugar I took pills since they assumed I had type 2. That didn’t change til I went to an endocrinologist when I graduated college and he said, well, I won’t quote him but you could probably see fire come out of his eyeballs 😉

      • It was probably a mixture of NPH and Regular. I read somewhere that insulin preparations used to be less pure and this made them slower, so the NPH might have lasted a long time.

        BTW, it’s amazing how much your profile picture looks like the husband. They say people start to look alike when they’ve been together a long time.

  1. Woohoo! Congratulations, Riva! And thank you for the many marvelous contributions you have made to the world by sharing so much of yourself. It makes a difference to so many! Sending much love and gratitude!

  2. Terrific, inspiring story! As far as insulin goes, might have been U100 strength since that was available beginning in the early 70s, though you might have started with pork/beef-based U80 Lente. (Hard to believe those days!)

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