an adverse experience, let's say for example, an unplanned hospitalization, the body responds. Our adrenals will send a message to the brain that we are in danger, it doesn't care, nor can it differentiate between a tiger chasing us or the unplanned hospitalization. Our stress hormones rise and our nervous system kicks in to fight or flight mode. This is the critical response.
It's critical to the brain to move through the feelings. It wants to run or fight. This is all well and good if you truly are being chased by a tiger, but you aren't. You are sitting in a hospital room watching your loved one suffer. There's nowhere to run and no one to fight with, so you do the next best thing...freeze, or collapse. We sit in the cold, sterile corner of that room and watch helplessly, and more often than not, we sit alone.
We aren't in physical danger, we aren't being threatened by some bully force; no, we are watching the dreadful workings of disease and suffering. Your brain is already in survival mode as it tries make sense of the experience. All of this unfolds seamlessly, and in subtle ways. We hardly notice the weight of the situation because over and over, we are forced to just handle it. We are in survival mode and our stealthy brain is dealing with the experience in the best way it knows how.
Time and again, the map of your world with chronic illness is filled with unexpected and traumatic experiences. Every day, you try to ignore the undertow of stress. To everyone around you, you act normal, juggle a million responsibilities, and appropriately ride out the ebb and flow of life.
But...that is not your reality.
Each time you experience an adverse response, your body struggles to maintain its equilibrium. Your stress hormones remain elevated and elevated cortisol creates issues with memory, organization, sequencing and attention. You may even find that the most minor event can surge a response that is clearly disproportionate to what is happening. We live in a constant state of hyper vigilance. We may find it difficult to string together words to explain how it feels and this furthers our isolation and feeling lonely when surrounded by people, even people we love.
but what does that have to do with chronic illness? Turns out it has everything to do with chronic illness, specifically, rare diseases that threaten to shorten a precious life.
First, let's discuss the differences between post traumatic stress disorder; PTSD and complex trauma, sometimes referred to as Complex PTSD. PTSD is caused by a specific event or even a series of events but it has a beginning and an end. Complex trauma is prolonged exposure to a series of losses or stressful experience, over a sustained period of time, with no end in sight. Often, these losses are less obvious and seemingly less dramatic than the single event causing PTSD. Complex trauma is cumulative.
Dr. Peter Levine defines trauma as a loss of connection. It's often hard to recognize at first, because it doesn't typically happen all at once, and before we know, it seems we have adapted to the setback. Gradually, over time, our nervous system becomes undermined and restricted.
In the instance of rare disease, we take our blows. Blow by blow. It starts out as one massive event that threatens to drowned us in a sea of overwhelm, such as the first sign of illness; a plummeting set of blood counts, a hospitalization, a diagnosis that no human within arms length has even heard of, let alone the archives of medicine.
And this, is just the beginning.
We think, at the time, that we will never recover from the devastating news that our child was born with a rare genetic condition or whatever the situation, but we do. At least it seems as though we do. We continue to get up every day and do what is required of us. We push aside the pain because we have to be strong. This is not the time to fall apart... We bulldoze our way through life.
As parents or caregivers, when we can't move through the traumatic event with the processing and connection to make sense of the suffering, or to be witnessed in the pain, that trauma gets stored away to be dealt with at a later date and time. Oh, don't worry, you'll get back to it.
With chronic illness, the rocky road unfolds ahead, and we face daily challenges in finding a quality of life we can live with. It takes so much time and energy to keep moving. We never have a moment to sit and rest our minds. Often we are caregivers and bread winners, mothers, fathers, classroom helpers, friends and the list goes on with what we are called upon to be and do. Life rolls on, with or without you. Chronic illness taxes every part of life, and leaves us with few resources and a serving of scarcity we hardly knew was possible.
This is Complex Trauma.
The jolting experiences that never end leave their print, with consequences we have yet to experience. We stop trying to fit into the world around us, and quietly battle the inner chaos that becomes what we are trying to survive.
What are the symptoms of complex trauma?
This is merely an abbreviated list of trauma symptoms. Complex trauma affects us in a myriad of ways.
Complex Trauma as it applies to rare and chronic illness is hardly ever talked about. The illness or condition eventually distances us and isolates us from the people around us we label as 'Normal' ,and we are left to face this alone. According to the National Child and Traumatic Stress Network, up to 80% of ill or injured children and their families will experience traumatic stress following a life threatening illness, injury or medical procedure. This persistent and traumatic stress will impair your daily functioning.
In articles to come, we will look further into the world of medical complex trauma and how it affects everyone involved, including the children who rise to the occasion of being one in a million, in a database of rare disease.