Scared straight: diabetes stigma and trauma

There is an impenetrable and terrible stigma attached to diabetes.  When Frederick Banting discovered insulin in 1921, did the stigma exist?  In the early days when a few children were saved (not cured), the scientific medical community celebrated. Nobel prizes were awarded. People with diabetes and their families were deemed courageous and lucky for Banting and his team’s resolve to find an answer to a premature death sentence.

Fast forward to today where there’s a perception that people with diabetes can be successful, unless they aren’t which often means it’s their fault.  Of course, I don’t believe that. As one of my doctors, Andrew Drexler said, “I am often surprised by how well my patients do because insulin therapy is so relentless, it’s almost cruel.”  Diabetes treatment, especially insulin therapy, is intensely rigorous, and physically and psychologically burdensome.

Given the challenges, the discipline, and the courage required to manage diabetes, an unkind stigma persists inside and outside of the diabetes community: a terrible life-sentence where one is pitied for developing diabetes and then evaluated on their ability to overcome the incurable condition. People living with diabetes are often judged by the notion of having a choice, as if anyone with diabetes is conscious of making one. I’d like to change that paradigm by examining a problem in our community.

One of the most difficult must-dos for people with diabetes is to confront routine doctors’ appointments. Fear and consequence are words that come to mind. A person mentally preparing for a diabetes appointment may ask, “Will they find a horrible complication?” “What if my numbers are bad?” and even, “Is it better not to go?” Preparing for a doctor’s appointment is often an exercise full of dread and anxiety.

I was unlucky when I was diagnosed with type 1 diabetes more than 40 years ago, doubly so. I was told by the emergency doctor that I would likely go blind, lose my legs, and probably not live past 30 years if I didn’t take my shots. “She will not have children,” he announced to my mother while I looked on from my hospital bed. I did not understand at my young age, that his goal was to scare me straight. It worked, but not well. I was terrified of my future and had nightmares for years. Yes, I did take my insulin, but I wasn’t thriving. To this day, I still remember him pushing my wheelchair to a window that overlooked a diabetes clinic to see a man with an amputated leg and a blind woman. He asked me if I wanted to be like them. I do not credit this doctor for anything other than trauma.

While that imprint of psychological terror never left me, I did learn that finding the right doctor is everything. Later on, when I was in my early twenties, I saw a doctor who told me I was a bad diabetic and I better get it together. “Your HbA1c is shit,” he said. I honestly don’t remember who left the room first, but this doctor had no idea that I had just lost my sister to cancer.  Through the stress and grief, my diabetes took a hit.  After some time and a lot of research, I finally found healthcare providers who always advise me with kindness.  I give a great deal of credit to my HCPs for my complication-free life.  In short, my healthcare relationships have been collaborative and friendly for decades, and so, I thought that the use of “scare-tactics” and hostility in diabetes care had vanished with time.

I was wrong.

Recently, I made an appointment to see an ophthalmologist to screen for retinopathy  Although I had seen him before, he did not address me by name or say hello when I walked into his office. Instead, looking at the photos of my retina on the lit wall, he yelled and ranted. “You have proliferative retinopathy. Your eyes will blow any day. What have you done to yourself?” When I asked him what I should do, he wheeled up to me on his medical stool too close to my face and said, “If you don’t do what I say you’ll wake up in bed with bloody eyes next week, then you’ll be blind. It’s hopeless.”  I knew his behaviour was all wrong, so I asked if he knew how long I had diabetes, and “Is scaring me, helping me?”

“Yeah, I think I want to scare you.” I was terrified of the diagnosis, the hostility – everything, but I stood up anyway, and told him to leave and get a manager. He left, and I never saw or heard from him again. I’m confident that I am not the first person this doctor mistreated, but I do believe I was the first person who spoke up.  Sadly, using scare-tactics to influence and humiliate patients until they crumble has not gone out of fashion just yet.

This story does have a happy ending.

While I did believe it was possible that I might have proliferative retinopathy after 42 years of diabetes, I also had the sense to remember my resilience.  I had lived through a T1D diagnosis over 1400 mg/dL, injected my own shots (based on urine testing kits) of beef and pork insulin for years, had a healthy daughter at 36 years and worked hard enough to be complication free today at age 54.  I called my team of endocrinologists to see what they advised.  “It doesn’t make sense, your targets are good, get a second opinion.” And, “Even if there is a problem, we’ll fix this.”  I made an appointment for the following Monday, but I was a mess until then, checking my eyes every 15 minutes or so.  I was that preteen in the emergency room again feeling overwhelmed and frightened.

The good news is I don’t have proliferative retinopathy, in fact, my eyes are in pretty good shape.  The second doctor, his team of fellows learning and looking on, kindly answered all my questions and helped me understand my diagnosis. What’s clear is while I can forgive the offending doctor for the wrong interpretation (I have a benign congenital issue behind my right eye) I can’t forgive his abuse. He did not follow the Hippocratic Oath.

First, do no harm.

Unfortunately, it’s easy to surmise that a part of the stigma of diabetes has grown out of the medical community and decades of doctor frustration with patients who have not reflected their clinical skill and ultimately, success.  Practicing medicine is often demanding, and requires discipline, strength and compassion, but it is a choice.  Living with and managing a serious chronic illness is hard work, and inner strength is invaluable, but diabetes is not a choice.

A part of the job of living with diabetes is finding and holding onto medical support that works to help you achieve your goals.  There’s no reason to feel scared or humiliated in the healthcare provider office which can result in trauma so horrific, it’s paralyzing.  It’s also reckless. Advocating for oneself, speaking up when something doesn’t seem right, asking questions and fighting for the best care all lead to personal empowerment, confidence, and most importantly, a healthier, happier life.

Now, that’s a choice.