How People With Chronic Illness Can Process Treatment-Induced Trauma

Living with chronic illness is complicated and it is not uncommon for it to be accompanied by anxiety, depression, stress, and feelings of overwhelm. But as I had to find out for myself, there is an element that is not often identified or treated properly: complex trauma due to living with chronic illness, or as proposed by Dr. Donald Edmondson, the Enduring Somatic Threat Model or EST form of PTSD.

Yet it is not only the diagnosis that is often not made, but the treatment normally offered does not recognize our body’s important role in what is called “mental” illness but is actually a biopsychosocial one that in the case of chronic illness-induced trauma, requires the body and nervous system to be addressed directly in what is often called a bottom-up approach.

It’s in Our Body, Not Just Our Mind

It is widely acknowledged that our mind, thoughts, and behavior are involved in mental wellness, but the role of the body and the nervous system is often disregarded. Although we have evolved the ability for rational, analytical thinking and problem solving, we still have our deepest physiological responses for survival.

Historically, this would have looked like needing to run away from or fight invading tribes or wild animals. Our body prepared us for this via our autonomic nervous system, increasing our heart and breath rate, taking blood away from our digestive system and sending it to our limbs for better use of our skeletal muscles, sharpening our senses, and releasing hormones like adrenaline. It can feel like stress, anger, fear, worry, or being on high alert. We still have these physiological responses as our body doesn’t differentiate between running from wild animals and ill health that causes pain and the possible need for medical intervention. We know this response as “fight or flight.”

However, if our autonomic nervous system senses that we can’t escape or fight the threat, it may create a different response such as freeze or shutdown. This looks like “playing dead” in the animal world or a rabbit frozen in the glare of car headlights, and in humans, it can show itself as complying with situations with/without emotion, feeling “stuck” or maybe hopeless and without choice except to accept a situation, feeling numb or disconnected from the people around you, your body, and your environment. In terms of chronic illness, we literally have to thwart and suppress our survival response to run away and we have to live with the full array of uncomfortable symptoms, medical treatments and regimes, and unsatisfying medical care.

The Many Tones of Trauma

Trauma was something we used to associate with victims of war or childhood abuse, but research over the last few decades shows us that trauma is not in the event itself, but in our capacity to process and integrate our experiences. It could be a major operation or it could be a medical doctor appearing to not place importance on our symptoms that are causing us distress that causes overwhelm and trauma.

Having trauma or traumatic stress is often not as invasive as diagnosable PTSD, and that is why it can be missed by your medical team, who often do not know what to look out for or don’t have the time to dedicate to your “mental” wellness. The symptoms of trauma are wide and varied, and can show up as things like sleep or digestive issues, headaches or migraines, hormonal imbalances, inflammation, difficulties concentrating or remembering, feeling numb or disconnected, fatigue, hyperalertness, an exaggerated startle response, irritability, guilt or shame, feelings of isolation, hopelessness or fear, and also anxiety and depression.

Talk and Medications Are Not Enough

Complex trauma cannot be treated with only talk therapy and medication; your nervous system must relearn how to orient to safety via your neuroception (sensory perception) even when your illness is long-term and uncertain. Neurobiological plasticity (the ability of our brain, nervous system, and physiology to change) means that if we experience symptoms of trauma, anxiety, shut down (depression) overwhelm, and chronic stress, our responses and reactions can change with inclusive help that recognizes our body as a vital part in our “mental” wellness.

The nervous system cannot be regulated through cognition and behavioral practices alone, but requires a body-based or somatic approach, that utilizes the primordial language of the body: touch, movement, mindfulness, visual images, human connection, and sound. When we sense a threat, our brain stem or our reptilian brain is activated, but it is our prefrontal cortex or higher brain that allows for rational thinking. To become more regulated, our body must be able to orient toward feelings of safety to come into the parasympathetic arm of our autonomic nervous system, which is where we feel safe, supported, relaxed but alert, calm, and even playful.