Hey Medical World!! “Noncompliance” is PTSD!!

by | Aug 24, 2022 | Blog, Grief | 0 comments

Research shows, and those of us that live with it know, diabetes is a fear-filled burden.  But now we are learning this loss of pancreatic function is textbook trauma.   Actually, a trauma that we relive every day!  As we understand trauma and how it may result in Post Traumatic Stress Syndrome (PTSD), some interesting parallels become evident.

Definition of Trauma

The Substance Abuse and Mental Health Services Administration (a division of the US Dept of Health and Human Services), defines trauma as “an event or circumstance resulting in: physical harm, emotional harm, and/or life-threatening harm.”
Diabetes absolutely causes each of these types of harm.  Not only does diabetes impact nearly every cell in our physical body, but we also have to harm our physical selves daily to treat and test.    The emotional toll often goes unrecognized but shame, guilt, fear, and depression are common diabetic experiences.  And lastly, diabetes is certainly life-threatening for without treatment, it will be fatal.   All the boxes are checked to qualify as trauma.

Perpetual Trauma

Unlike an event that occurred once, diabetes is a chronic, unrelenting threat.  It is a traumatic experience to lose an organ that is necessary to keep you alive.  Each day brings the possibility of hypoglycemic events that skate close to the edge of death, high blood sugars that induce fear and guilt of future complications, and the requirement of hyper-vigilance to manage the thing that can kill you.  You never get a break. The threat of harm is always there; to treat it well, you must keep that threat in your awareness 24/7.  Never a day off.

So it’s no surprise, that extreme trauma symptoms go hand in hand with diabetes.

PTSD and Chronic Illness

Psychology Today offers this research and great insights.

Post-Traumatic Stress Disorder (PTSD) is very real. A good working definition of PTSD is as follows: “an anxiety disorder initiated by an exposure to a discrete traumatic event that has generally occurred in the past … and is characterized by symptoms such as re-experiencing, cognitive or behavioral avoidance of reminders of the event, and physiological hyperarousal”(Edmondson, 2014).

As a prolonged and recurring trauma, researchers have proposed a PTSD model for diabetes and other chronic illnesses called Enduring Somatic Threat (“EST”).  It can be used to assist treatment and promote understanding.  In a nutshell, when their own bodies are the source of fear and terror, people with diabetes suffer from chronic exposure, resulting in psychological symptoms that make diabetes management near impossible for those unable to cope.
To the medical world, it looks like people making really bad choices or avoiding their care. But, the individuals living this reality are merely trying to avoid the threat, minimize triggering situations, and/or lessen their pain.  Their nervous systems get stuck in a sympathetic state of fight or flight and decisions are short-term and reactionary.  Triggers and threats might look like needlesticks, doctors’ offices, providers, technology, family members, or certain phrases.  The short-term relief of alcohol, drugs, food indulgences, or other self-soothing behaviors also make sense in this framework of PTSD.  The safety and relief of the quick-fix are hard to pass up when triggered, even though effective diabetes management requires a long-term focus.

Trauma and Shame

If PTSD symptoms weren’t enough, we also find that shame is a typical result of traumatic experiences.  In the Healing Trauma Program, Dr. Jeffrey Rustein, a clinical psychologist and an expert in the treatment of trauma states offers this insight:
If you’ve then experienced trauma, and part of trauma, especially interpersonal trauma, involves a lot of manipulation of shame and blame, then what happens is these normal shame circuits are built to a very high and strong quality. It takes very little to set them off, and they come on with a roaring response, and it stays on for a long time.
So a real common experience for people who’ve experienced trauma is an abiding feeling that there’s something wrong with them, that they’re different, that they’re less than, that they’re
broken, that they’re messed up beyond all repair, that there was never anything good in them. These are all expressions of shame, of this belief, this sense that we are, to our core, rotten or bad or wrong.
Unfortunately, shame seems to be baked into diabetes for many.  While there have been many advances in diabetes management, it is still an inexact science that results in imperfect glucose management on a good day.  Diabetes perfection is about as real as “a cure in five years”.  When lab values or glucose checks fall out of range, it can feel like a failure, which can lead to a downward spiral of guilt, remorse, self-loathing, and regret.  All close relatives of shame.  I have met very few people that live with diabetes who, on some level, at some time, didn’t feel they missed the mark. Some much more so than others.  They share sentiments like:
  • Something is wrong with me
  • I should be able to control sugars better
  • I am a burden to my family
  • I can’t do what my doctor/diabetes educator says
  • I brought this upon myself (especially with Type 2)
  • I am defective
  • I am unworthy
  • I am failing
Sound familiar?  These are all “shame” statements.
Looking through the lens of this trauma research it’s no wonder people struggle to do diabetes “perfectly” and many just give up.  It’s a heavy psychological and emotional burden that gets little attention or treatment.  Shame and avoidance are only exacerbated when you are labeled “noncompliant” by a provider.

Support and Treatment

So now that we see the trauma of diabetes, what do we do?  Providers, it starts with you.   See every patient you treat as a person with potential PTSD/EST that didn’t come pre-packaged with all the coping skills to navigate this hardship.  Stop with the labels.  “Non-compliant” doesn’t help anyone.   A victim of abuse, a soldier returning from war, or a patient with extreme bodily injury receives understanding, support, and tenderness.   A diabetic with an elevated A1C gets reminded of their failure, threatened with future complications, and often some level of judgment for their predicament.
I realize not all providers are like this, but I am painting with a broad brush because it’s so prevalent in the medical system.   We can change this.
Be the person to witness this struggling human and show compassion for their situation.  Encourage therapy and coaching in addition to carb counting and meal planning education.  Expand the model of diabetes management to include a holistic approach with care for all aspects of a person – body, mind, emotions, and spirit.   Psychosocial support is imperative for long-term diabetes success.

To my Diabuddies

To those of you living with diabetes, contemplate this idea of trauma and see how your experience aligns with this research.  Does this help to explain your feelings or situation?   Once you notice it, you can never unnotice it and that awareness is where healing begins.   Observe the trauma you have suffered and may continue to suffer.  See how it shows up in your life and makes you do things you don’t really want to do.   Show kindness to the parts of you that are hurting and afraid.   And get help to sort through all this and learn new coping skills.   You deserve it!!
I hope today is the day it all changes for you and you start a new journey to safety and wholeness.
Need some help?  Let’s chat!  Book a call HERE.
Be well,

Patricia Daiker Diabetes Coach



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