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Adverse Experiences, Stressful Episodes and Chronic Diseases
The Connections Between Chronic Stress, Trauma and Chronic Illness
Like many other folks who have gone before me, my research, conversations with hundreds of people suffering from chronic diseases, chronic stress or trauma, and my own real life experiences of a Parkinson’s Disease diagnosis, all led me to the firm conclusion that the fundamental root-of-all-root causes of most cases of so-called idiopathic (meaning “of unknown origin”) illnesses is chronic stress. More particularly, I have come to firmly believe, and witness, that the origins of many chronic symptoms can be traced backed to chronic stressors first encountered in early life.
Note that, while we are exploring the links between adverse experiences, stressful episodes, chronic illnesses and trauma, it is very important to keep front of mind throughout, that it is not always a negative experience per se which causes the damage. Instead, it is sometimes due to the lack of the right tools, education, support or environment to cope, survive relatively undamaged, and to repair. Thus an event which may be highly traumatizing for one person, may be a non-event for another person who has a different toolkit, training and supportive environment.
Adverse Childhood Experiences
I think that I first became aware of the original Adverse Childhood Experiences (ACEs) study when reading the life-changing book “When the Body Says No” by Dr Gabor Mate (I will be posting my full review of this book, and what it did for me, in the near future). Below is the abridged synopsis from the original ACE study article.
Questionnaire… was mailed to adults who had completed a standardized medical evaluation...; 9,508 responded. Seven categories… were studied: psychological, physical, or sexual abuse; violence against mother; or living with household members who were substance abusers, mentally ill or suicidal, or ever imprisoned. The number of these categories [scored]… was compared to measures of adult risk behavior, health status, and disease.
>half of respondents reported at least one… quarter reported ≥2 categories of childhood exposures… a relationship between the number reported and… the adult health risk behaviors and diseases… increased health risks for alcoholism, drug abuse, depression, and suicide attempt… physical inactivity and severe obesity… the presence of adult diseases including ischemic heart disease, cancer, chronic lung disease, skeletal fractures, and liver disease.
The original 10 questions asked in the questionnaire can be found in Table 1 of the research article, but are also more conveniently collated on the Aces Too High website, which is a gold mine of information about ACEs. Take the questionnaire yourself and see how many you score out of 10. If you answer “yes” to 4 or more, than you have significantly enhanced risks of chronic issues, and so may want to start making changes in your life which ameliorate these risk factors. It is never too late.
One potential shortcoming which I have observed with the original ACE study is that those of us with significant chronic issues have a tendency to block out some of the negative experiences of childhood from explicit memory, which are instead stored as body memories, waiting until the body feels safe enough to process them. If left unattended for too long, these unprocessed body memories can then later emerge as physical symptoms.
So since many of our memories of adversities in childhood end up being thus stored implicitly, some people with chronic illness tend to say, and indeed believe, they had an idyllic childhood, even if this is not quite the case. There may also be, in part, a tendency for some people to gloss over childhood problems because we don’t want to think badly of our parents/guardians. It is not until we have a done quite a lot of therapy work that we can safely re-connect with the memories of all our ACEs. So, in my view, the original ACEs study likely grossly underpredicts the true extent of ACEs, and their connections with chronic issues later in life.
Nevertheless, the original ACEs study has been replicated and reproduced around the world, and the results seem robust.
Extensions of ACEs
As follow up ACE studies have been performed globally, the set of research themes has widened to include additional elements such as bullying, living in a war zone or unsafe neighbourhood, facing discrimination, etc. See ACES Too High for the details of this widening scope.
The research has also been widened to the effects of chronic stressors at different stages of life, not just childhood, which can also contribute to towards onset of chronic disease symptoms. I am thinking, in particular, of the work of my friend and colleague Dr Veronique Mead, author of Chronic Illness Trauma Studies, who also has suffered from a significant chronic illness herself. Here, we will explore these extensions of ACEs by Veronique, and some others too.
I think it will tell the best story if we work backwards in time from the point of diagnosis.
On the subject of diagnosis, I would add here that the way in which diagnoses of chronic illnesses and diseases are currently delivered by healthcare systems is, in itself, one of the most significant singular adverse events we can experience in life. It is like a spell of doom, or a curse, more scientifically referred to as nocebo effect, that is placed on us by the system. Most of us have to spend years just to get free of that medical narrative, before we can even start to heal.
Adverse Pre-Onset Experiences
If we consider Sela Weaver’s Threshold Theory of Embodied Experience, many adverse experiences and stressful episodes can build up trouble over a lifetime, eventually reaching the level that symptoms become so noticeable and detrimental that a diagnosis is sought. Then our “Adverse Pre-onset Experiences” (APEs) correspond to Veronique’s concept of the final one or two triggers (APOEs in Veronique’s parlance) which tip the balance, the “final straws that break the camel’s back” in the descent into disease.
According to Veronique, because the APEs that drive symptoms to diagnosable level, are just the last in a cumulative series of unfortunate events, these tend to be unique to the individual. For some, it may be exposure to chemicals, or an infection, a physical trauma or accident, the sudden loss of a loved one, or the break-up of a relationships, and so forth.
Often a person who is diagnosed with a chronic condition can over-identify with their APEs as the de-facto root cause of the disease, due to the temporal correlation with symptom onset. For example, we often hear stories of how a particular virus causes a particular chronic disease. This is why it can take folks a long time to begin to realize, and to come to terms with, the fact that the true root causes of their problems may date back much further.
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Adverse Adulthood Experiences
This is how Veronique classifies adverse and stressful events which occur between the age of 18 and the last straw APE triggers. Example of AAEs could include divorce, being made redundant, loss of a child, a toxic relationship, financial problems and getting in to debt, being mugged. imprisonment, and so forth.
Adverse Late Formative and Teenage Experiences
This is how I have chosen term adverse experiences and stressful episodes that are encountered mainly outside of the parental home and supervision, between the ages of 5 and 18. Examples of ALFATEs could include unsupportive schooling, abusive teachers, sectarian religious instruction, involvement in a cult, peer pressure, being bullied, gang involvement, etc.
ALFATEs also include the institutionalized discrimination of all types experienced while growing up covered by Veronique’s term “Adverse Institutional Experiences”. They also include two types of adverse experiences which have been given special names:
Religious Trauma, which covers the negative aspects of religious doctrine, that can lead to excessive feelings of shame, guilt, unworthiness, self-disgust, fearfulness and hypervigilance;
Boarding School Syndrome, which relates to the trauma of the early loss of family and home, and being thrust into the vagaries of this rarefied and peculiar system, especially an issue in the UK, in particular because it remains the case that many people in the higher echelons of UK government, and indeed Prime Ministers, have come through, and likely have been damaged by, this system.
The passage through puberty in modern society, which totally lacks appropriate rites of passage, can be particularly traumatic, and hence can become a significant source of ALFATEs, resulting in toxic levels of shame and long lasting body image issues.
Adverse Childhood Relationship Experiences
In Veronique’s schema, the ACREs cover not only the impacts of parental abuse or neglect, but also just not having our needs met by our parents while growing up, the lack of what Prof. Darcia Narvaez terms “the Evolved Nest”. According to Veronique, ACREs are some of the biggest risk factors of all for chronic illness in later life, and are also the ones that don’t really show up on the original ACE questionnaire.
This type of adverse experiences is also the main basis for Dr Gabor Mates work, and are also sometimes referred to as Attachment Trauma. It is where I would also site Dr Laurence Heller and Aline LaPierre’s work, covered in their book “Healing Developmental Trauma”.
Adverse Babyhood Experiences
This is how Veronique terms stressful events which occurred to us while in the womb, during and shortly after birth, and in early infancy. Since we don’t retain explicit memories of this time, these factors can be some of the hardest to get to the bottom of and come to terms with.
This is where I have traced most of my own most impactful adverse experiences back to. I was born premature, by caesarean section, separated from my mother for a time after birth, and wasn’t breast fed. These are all now known serious risk factors for problems in later life. I only found this information out through candid and open conversations with my mother.
For the intricate details of how adverse experiences, especially in early life, can alter and affect the development of our epigenetics, cardiovascular, endocrine, nervous and immune systems, brain chemistry, and brain structure itself, and how these, in turn. can increase the risk of chronic conditions in later life, see the Aces Too High and Chronic Illness Trauma Studies websites, and Bonnie Badenoch’s book “The Heart of Trauma: Healing the Embodied Brain in the Context of Relationships”, which all provide excellent information about this.
Here, I will just offer the simple explanation.
Basically, whenever we encounter an adverse experience or stressful episode that we don’t have the tools to deal with or process, our brains and bodies are put into a state of chronic stress, corresponding to activation of our survival instincts, defensive nervous system, and left-brain hemispheric states, for prolonged periods.
Unfortunately, our bodies and brains cannot repair or rejuvenate while in these stressed states. Indeed, these states tend to exile us from the calm, relaxed states required for healing, growth, learning and restoration. It disrupts our sleep, our elimination and detoxification processes, our ability to absorb nutrients, and makes us more prone to infections. This leads to increasing levels of pain and inflammation.
In this chronically stressed state, our system does not feel safe enough to create, and then process properly, explicit memories of further stressful events, and hence these tend to get written and sequestered as body memories, where they are stored and await a time when it is safe enough to process them to explicit memory. If this time never comes, and the body memories are left unprocessed for prolonged periods, they eventually emerge as symptoms.
As we acquire more inflammation, pains and body memories, the set point for stress also decreases, so we develop a hair trigger, and smaller and smaller stressors trigger us. Things which other people would not even notice, become major events for us, and we develop the tendency to blow things up out of all proportion.
As the number of unprocessed adverse experiences and stressful episodes encountered in our life continue to add up, in order to cope, we begin to adopt survival styles which are maladapted for being an adult in the modern world, and, in attempts to ameliorate the stress, we engage in addictive and risky behaviours, and form toxic relationships
All these feedback loops and vicious circles, eventually add up to the point of us seeking a diagnosis.
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How Can We Help Ourselves?
All is not lost, and it is never too late to make helpful changes, provided you are still able to engage mindfully in self-directed or assisted therapies, and provided you are not still currently living in the midst of an adverse experience or stressful episode for which being in survival mode is actually necessary and an adaptive response.
I provided a “master list” of small changes we can make in our daily lives which can help break the vicious circles and feedback loops, together with a recommended reading list, in my first substack article. Veronique also provides a useful list of tools.
However, it is very challenging and takes a very long time to do the work on yourself on your own. Many people find it helpful and faster to work with a therapist. There are now many proven modalities for trauma healing, either those which work with the mental aspects which also help reduce the physical symptoms, or work through the body which also helps the mental aspects. It is often a matter of trying different many different modalities, and finding the one which works best for you. Don’t give up if the first option you try doesn’t work for you. Again, Veronique provides a useful list of potential candidate therapies.
Taking myself as an example, I will briefly cover the two (one mental and one physical based) modalities that I am currently engaged with, and through which I am seeing continually positive results and progressive reduction in all symptoms.
Firstly, I am working with therapist Lilian Sjøberg, using a technique where you investigate your symptoms very carefully and in depth as if you saw yourself from the inside, and to give a particular symptom 100% bandwidth of your attention. Lilian gets you to describe the symptom, and most people do it using a visual metaphor. A rope, a ring, a ball. It is just to have a common language so she can follow your story, but the visualization seems very vivid and real. From the words you use to tell the story of your symptom, she can hear if you are using healthy or unhealthy descriptions. She balances and guides the narrative, and lets you find the story behind the installation of the body memory, then helps you release the tensions and emotions which were stored with it.
I am also daily using a self-care fascia decompression modality called Block Therapy, developed by Deanna Hansen, which consists of using a specially designed block of wood as a tool to release and restructure the fascia (connective tissue) at deep levels, down to the bone. This is my physical portal to access and release the body memories, and associated tensions and emotions
Lilian and I have also developed a free online course, Body Memories and Fascia, to help familiarize people with these concepts.
How Can We Help the Children?
However, perhaps the main thing we should focus on as a society is developing and providing the tools, support and the right environments to children, with which they can thrive and flourish, and which counter or offset any ACEs they may experience, and hence to nip the vicious circles in the bud. These are what are termed “Positive Childhood Experience” on the ACEs Too High website, where you can also find lots of details of what these PCEs may look like, and the research conducted so far.
I also highly recommend the work and new book by children’s psychotherapist Louis Weinstock, "How the World is Making Our Children Mad and What to Do About It: A field guide to raising empowered children and growing a more beautiful world”, and the book “Grounded: Discovering the missing piece in the puzzle of children's behaviour” by Claire Wilson, which teaches adults about the changes we can all make in ourselves and own lives in support of the children.
To learn more about the ideas behind this article, sign up to our short course “Body Memories and Fascia”,
or you can also delve much deeper with my complete online course “Nervous System in Chronic Illness”, which aims to cover everything I’ve learned along the way.