One of the questions I regularly see from people with chronic illness and other health conditions is whether adverse events that are not among the 10 ACEs (adverse childhood experiences) influenced their risk.
Another is the sense that the only adverse event that influenced risk for their illness seems to have been the accident, the surgery or the loss of a loved one that happened right before they got sick.
A third question is one I used to have when I thought my own ACE score was zero - which was how to include the subtle, covert, hard-to-recognize challenges of growing up in a household with parents who loved you but who were emotionally unavailable, psychologically unable to express their love, or not able to nurture and comfort us when we had difficult emotions, which are also well-known effects of trauma. Or how to include the large bodies of other evidence for risk, such as the finding that prenatal stress is an important risk factor for a host of chronic diseases from type 2 diabetes, high blood pressure, bigger bodies, high cholesterol and strokes to osteoporosis, kidney disease, Alzheimer's and more.
As I've discovered since leaving my career as a family doctor, retraining as a somatic trauma therapist, and scouring the research for the past 20 years - adversity of all kinds, in all phases of our lives, and in past generations influences our health. As does discrimination past and present. And that it's the balance between our experiences of resources and nurturing care on the one hand and of adversity on the other that shapes our risk for chronic physical illnesses as well as challenges with emotions, behaviors, relationships and beyond.
ACEs Science is Paving the Way
ACEs science is waking the world up to the role of adversity - big and small, overt and covert, from acts of commission as well as acts of omission - as one of the most important non-genetic risk factors for chronic illness and other conditions that keep people from reaching their full potential.
It is also paving the way for recognizing the role of other categories of adversity that shape health.
In a first communication with Kaiser's Dr. Vincent Felitti, principle co-investigator with Dr. Robert Anda of the CDC for the first and subsequent ACEs studies, he addressed some of these concerns by recommending an 11th question to the ACE screening:
11. Are there any adverse childhood experiences in your life that should be added to the above list (of 10 ACEs)?
This adds a whole layer of options to how we use ACEs and how they help make sense of our states of health.
As I continued to delve into the literature , however, I felt the need for an even greater expansion of risk assessment. An expansion that could help us address risk and prevention in even more ways.
The first new category involved adverse babyhood experiences or "ABEs." I checked with Dr. Felitti, who reassured me there was no problem with my creating new terminology that builds on the term of Adverse Childhood Experiences. I have since created 6 additional categories of adversity that influence health.
These 7 categories add to ACEs to offer a way to inform ourselves and to support people with health conditions, their families and loved ones, health care professionals and others about the pervasiveness of adversity in all walks of life. It's not about blame but about continuing to increase our understanding and awareness. Because this offers opportunities for identifying risk. It also provides a foundation for improving prevention, intervention and support that can help stabilize symptoms, slow down worsening of health conditions, and potentially reverse chronic illnesses and other effects of adversity.
Here are short introductions to 8 categories of adversity that influence health. My focus is on chronic illness, which I emphasize below, however these 8 categories of risk are also present for many other effects of trauma. As with ACES science, there are large bodies of other research that support each of these categories. I include links to resources, references and free fact sheets I've created.
1. Adverse Pre-Onset Experiences (APOEs)
Onset of a chronic illness or other chronic condition often begins after one or more "last straw" or "triggering" events. We especially remember triggers if the onset was sudden. These triggers tend to involve some form of threat, including:
- psychological trauma
- physical trauma
- biological threat such as infection
- chemical threats such as exposure to toxins
The final straw even that triggers the onset of a chronic illness doesn't have to be big. This is because these are the last in a series of exposures rather than the first or only.
Planting Seeds for Healing APOEs
- Types of adverse events that can trigger onset of chronic illness
- Summary of the science on how adversity affects risk for chronic illness
- Triggering events can stimulate the cell danger response
2. Adverse Adulthood Experiences (AAEs)
When we start to explore whether adversity may have played a role in our getting sick, we often recognize we've had a number of stressors or traumas in the preceding years or decade. Divorce. Accidents. Surgery. Caregiving for a loved one. The loss of a loved one ...
This AAE category is for stressors that happen after your 18th birthday and in the 3, 5, 10 or more years before the onset of illness.
If you don't know of anything that triggered the onset of your chronic illness it could be that it started gradually, as it did for me and my symptoms of disabling chronic fatigue syndrome which gradually worsened over a period of 10 years until I was essentially bedridden. 40% of people with chronic fatigue syndrome (ME/CFS) have a gradual onset.
Planting Seeds for Healing AAEs
- The science of brain plasticity explains that our bodies are not "broken"
- Here's how adversity affects the nervous system
- Here's how epigenetics work and why it's not "in your head"
3. Adverse Childhood Relationship Experiences (ACREs)
This category expands on the ACE known as "emotional neglect" to include any kind of challenging interactions with the adults who raise us.
Even when parents deeply love their children they may have difficulty connecting or supporting them with insightful attention, kindness, and thoughtful listening. It's not that parents have to be perfect but about their being able to repair with their children after inevitable mistakes. This fosters resilience.
ACREs are about experiences such as being shamed or judged, ignored, or of not feeling seen, heard or believed. Many of these experiences occur along with ACEs but can occur in isolation to influence our developing nervous systems, immune systems and how our biologies learn to respond to threat.
Planting Seeds for Healing ACREs
- How healing ACREs helped resolve my severe food intolerances
- The science behind ACREs
- Ana Joanes' documentary "Wrestling Ghosts" provides an example of howACEs influence what I refer to as ACREs
4. Adverse Childhood Experiences (ACEs)
Over the years of digging into the research, I've been working to heal my chronic illness using perspectives on trauma and how adversity influences the nervous system and alters perceptions of threat. This is how I eventually recognized that my ACE score was 2, not the zero I once thought it was. This awareness came from subtle experiences of emotional neglect I hadn't realized were common in my family because they simply seemed to be what was normal, and from the discovery that my mother experienced postpartum depression during my first two years. Postpartum depression is a form of mental illness.
Hundreds of ACE studies have been conducted since the first one in 1998, with similar results across different populations.
Planting Seeds for Healing ACEs
- Anti-ACEs and Counter-ACEs research (support is enormously protective)
- Intro and Overview on ACEs and chronic illness with the science
- Free ACE Fact Sheets to educate your doctor (Oprah and others on ACEs)
- Therapies for healing ACEs
- ACEs and ME/CFS
- ACEs and Type 1 Diabetes
- ACEs and Rheumatoid Arthritis
5. Adverse Childhood Experiences Plus (ACEs +)
The main limitation of ACEs is that they only include 10 narrow categories of adversity. ACEs Plus incorporates question #11 that Dr. Felitti proposed I add to the ACEs questionnaire in the spring of 2018: "Are there any adverse childhood experiences in your life that should be added to the list?."
We also have enough research to know that all types of adversity influence long-term health. This includes spanking, covert incest, being bullied, growing up in poverty or in an unsafe neighbourhood, losing any loved one before your 18th birthday for any reason, witnessing any type of covert or overt violence and more. It also includes medical procedures, serious illness, and separation such as being hospitalized, such as for an illness, accident or injury because such events are often traumatic for children.
Planting Seeds for Healing ACEs +
Resources are the same as for Healing ACEs (above)
6. Adverse Babyhood Experiences (ABEs)
Adversity in our parents' lives before conception, during pregnancy with us, and in our birth and first 2 years of life has an impact on our long term health. Because our nervous systems and other organ systems are developing during pregnancy and immature at birth, they interact with and are influenced by their environments, which includes parents. Parents actually serve as "pscychobiological regulators" for their babies and parenting stress, contact and holding, gaze and other interactions affect epigenetics, function and more. Because ABEs interfere with bonding, early events also increase risk for ACEs.
I've created 10 categories of adverse babyhood experiences that have been found to influence short and long-term health. The 10 ABEs categories involve a mother and father's experiences before conception (#1), as well as parental experiences (#2 to #5, #10) and the baby's experiences from conception to a child's 3rd birthday (#6 to #10). The focus is on mothers and babies but includes a father's experiences. ABEs provide a base from which to understand types of risk factors that influence health and are not limited to specific experiences.
The 10 Categories of ABEs include:
- Maternal Loss or Trauma (includes maternal history of ACEs)
- Lack or Loss of Support for Mother (moving, single parenting, disapproval...)
- Maternal Emotional Stressors (loss of a loved one, financial stress, grief)
- Maternal Physical Stressors (illness, poverty, domestic violence...)
- Maternal Experiences of Labor & Birth (surgery, interventions, cesarean...)
- Baby Experiences around Birth (cesarean, forceps, difficult labor, circumcision...)
- High or Low Birth Weight
- Baby Did Not or Could Not Breastfeed (can indicate bonding disruptions...)
- Baby Separation (incubator, NICU, hospital stay, adoption, foster care...)
- Symptoms in Mother or Baby After Discharge (colic, difficult to console, cries a lot, postpartum depression...)
Planting Seeds for Healing ABEs
- Comprehensive Guide to ABEs (details of each category, healing & prevention)
- My published journal article introducing ABEs and other ABE Resources including a free ebook, fact sheet to educate your doctor, and the best free downloadable journal articles on the science
- How ABEs affect bonding and illness, and how healing ABEs can cure asthma
- Prenatal stress, low birth weight increase risk for type 2 diabetes and more
- ABEs and autoimmune disease
- ABEs and ME/CFS (chronic fatigue syndrome)
- ABEs and rheumatoid arthritis
7. Adverse Multigenerational Experiences (AMEs)
A history of chronic illness or other chronic conditions in the family may not mean our own similar illnesses are entirely or even mostly genetic.
Adversity in our parents' and grandparents' lives may initiate risk for chronic illness and can increase risk for ABEs and ACEs. This is because parental trauma affects their ability to regulate their emotions, biology, behaviors and more and can therefore make it harder to support these types of regulation in their children. AMEs can also affect epigenetics.
Planting Seeds for Healing AMEs
8. Adverse Institutional Experiences (AIEs)
Over the past year we have had opportunities to recognize how pervasive historical trauma and discrimination is in our culture. AIEs are events that affect a group of people based on ethnicity, race or other shared characteristic and differ from adverse multigenerational experiences in that they involve more than a single family lineage.
AIEs from the past and present increase risk for chronic illness and are important risk factors, including here in the United States with our history of slavery, genocide, colonizing of other cultures and countries, and hundreds of years of immigrants who have come to escape trauma of all kinds in their homelands.
This history affects us all, whether it's from white privilege and the trauma histories that lead people to be and become oppressors, from being on the receiving end of oppression, or from experiencing the ongoing effects of inequality and beyond. Harvard Sociologist Dr. David Williams is a pioneer in this area of research finding that discrimination increases risk for chronic illness and has developed survey instruments that document the connection between discrimination and disease.
Planting Seeds for Healing AIEs
- Introduction to AIEs and chronic illness
- Examples of AIEs and increased risk type 2 diabetes in people of culture
- Resmaa Menakem's book: My Grandmother's Hands (compassionate, nonjudgmental, with exercises)
- Video: Gwyneth Paltro and Dr. Nadine Burke Harris June 2020
Like ACEs, these 8 categories of adversity provide opportunities for changing how we understand, identify and work with adversity and its effects.
Understanding adversity in all its forms and faces helps make sense of the complex picture so often involved in shaping our health. Ultimately, it reminds us and guides us towards the large number of tools so we can find the ones that resonate for us on our journeys to reach our fullest potential and connect in the most satisfying ways possible.
Therapies for healing effects of trauma and nervous system perceptions of threat