Diabetes Community, We Can Do Better

— “Surely you will quote the proverb to me, ‘Physician, heal thyself!'” — Luke 4:23

A long, long time ago–we’re talking maybe 25 years–I can remember feeling anxious, overwhelmed, and upset about problems I was experiencing that were a direct result of dealing with Type 1 Diabetes. At the time, I felt not only helpless, but like listening to the experts wasn’t helping either.

My doctor had told me to avoid dangerous low blood sugars after exercise. So I avoided exercise. After all, as an active 11-year-old, it was the cause of most of my lows. So I took to staying indoors, reading books, and kept my sugar high enough to avoid disaster.

This continued from 1972 until 2004, a total of 32 years.

I had questions about avoiding lows without running high blood sugars, and adjusting my insulin during exercise, but my doctor said he couldn’t advise me on exercise. I talked with a Diabetes Nurse Educator DNE), but she couldn’t tell me how to handle that because she had neither the clinical credentials to advise on insulin dosing nor the coaching credentials to advise on exercise. Worse, much of her advice was too much too fast, like listening to Mandarin being spoken, and a lot of it went right over my head. I talked with a coach and personal trainer, but none of them felt comfortable or knowledgeable enough to address questions about diabetes and exercise.

That was beyond frustrating.

Somewhere around 1997, I found a diabetes-focused USENET group (remember those?) called misc.health.diabetes, and began to ask questions about how to fill in the blanks.

But the “vibe” was all off. There’s a scene in the movie What Dreams May Come where the character played by Robin Williams, the husband of a woman who had committed suicide, literally searches through Hell to find her and save her. In that scene, Williams’ character is passing through a field in a dark and ominous looking landscape and suddenly realizes he’s walking on the heads of the damned. He hurries along as arms reach out from the vast pit of despair, pulling and dragging him downward.

The group I stumbled into was like that. In it I saw nothing but suffering, self-blame, depression, hopelessness, and fear of what was to come, souls wailing and gnashing their teeth and clawing their way upward so desperately they dragged those above them down into the pit.

I struggled for the next ten years before I managed to take the initiative to face down my justifiable fears of hypoglycemia and try to lead a healthier life. And it was only that glance over my shoulder and into the pit behind me that kept me determined to get out.

Not a very positive experience. It felt like running from a dog, and I suspect many of my fellow diabetics can identify with the feeling. Like Robin Williams’ character in What Dreams May Come, you barely escape.

Some things haven’t changed much since 1997.

The pit is still there, but it’s moved to social media. The vast gap between clinical and practical advice for dealing with diabetes challenges is STILL one that will not bridge itself, and there have been times when I wanted to just get everyone all into the same office at once and refuse to let any of us leave the room until we had a plan.

That will never happen. So we must seek alternate approaches where we least expect to find them.

Recently, I visited the home of a close friend who had struggled with addiction and relationship issues since the mid 1980s. He’s significantly improved now, though he’ll tell you he’s a work in progress. One of the things that caught my eye was a copy of the magazine Grapevine, which bills itself as “the international journal of Alcoholics Anonymous.” The magazine is really an amazing thing. The issue I picked up, September 2024, is a mixture of personal stories, not all happy and inspiring, but nearly all of them contain the seeds of optimism. Some of the articles focus on practical skills for addressing head-on the factors that lead people to abuse alcohol and drugs in their weakest moments. Many focus on keeping a healthy mind, developing true listening skills, and practicing gratitude. A few even focus on the special challenges faced by neurodivergent people, people in high-stress jobs, and folks with broken families.

It’s the exact opposite of the version of Hell I encountered over two decades ago. People who have every right to practice self-destruction choose not to, instead providing realistic examples and guidelines for others who are walking the same road. You can learn a lot from people who are in the same boat as yourself, provided you’re all actually trying to get to shore. And that starts with believing you’re actually going to make it.

I feel like the diabetes world needs more Grapevine and less misc.health.diabetes.

The best doctors, nurses, coaches, counselors AND PATIENTS know this means Doing The Hard Things. Stepping outside our own clinical, experiential, and technical comfort zones and acting with sympathy, attentiveness, and compassion is the only way we can climb out of Hell, not on the backs of others, but on the ladder we forge from our own hope, faith, self-efficacy, and inherent agency.