If you have a chronic illness, research showing links between adverse childhood experiences (ACEs) and chronic illness may help begin to make sense of your symptoms.
They explain why it’s not your fault.
And why it’s not in your head.
In this post you will be able to calculate your ACE score and see graphs of your anonymous results, get explanations of what ACEs are and what your ACE score means, download ACE fact sheets to give your doctors and other health care professionals, and learn how ACEs are more common than we realize, highlighted by an example from the 2014 movie “Boyhood.”
You can watch videos from two of the most compassionate doctors I’ve ever heard (the two who created the ACE questionnaire) and learn about the specific research linking adverse childhood experiences and chronic illness.
What’s also important to know is that the science linking adverse childhood experiences and chronic illness offers vital new tools and resources for working with symptoms, triggers, flare-ups and other common experiences associated with chronic illness.
They may also help explain chronic symptoms that have gone without explanation or understanding.
***Free eBook5: ACEs
This free ebook comes in PDF and kindle formats. It contains this post with 2 other blog posts and the ACE questionnaire. The PDF includes the two ACE Fact Sheets (they do not format well for the kindle version).
What’s Your ACE Score?
In the 1990s Dr. Felitti collaborated with medical epidemiologist Dr. Robert Anda from the Centers for Disease Control in putting together the ACE study (1)Felitti, V.J., et al., Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults. The Adverse Childhood Experiences (ACE) Study [see comments]. Am J Prev Med, 1998. 14(4): p. 245-58. Full Text. After detailed research Anda chose 7 areas of childhood trauma to examine and soon added 3 more. He drew from areas for which national programs were being created at the time (2)Huff Post Part Three.
Each of the 10 ACE questions receiving a yes gets 1 point, even if you have had more than one exposure or many years of exposure to a particular type of ACE. This gives a maximum of up to 10 points.
All the questions refer to events that occurred before the age of 18.
The ACE questionnaire is not a test. It is a tool that will give you an idea of a few kinds of adverse experiences or traumas that have been found to increase risk for chronic illness and other health conditions, among other difficulties.
Calculate Your ACE Score with the ACE Questionnaire
Below is the original ACE questionnaire, developed and first studied in 1998 by doctors Vincent Felitti from Kaiser and Dr. Robert Anda at the Centers for Disease Control (CDC).
* Your responses are anonymous and are also reflected in the identical questionnaire and graph on the ACEs Fact Sheet blog post.
You can download free ACEs fact sheets summarizing chronic illnesses and other health conditions affected by ACEs below. These include the ACE questionnaire and can be used to inform or educate family members, colleagues, your doctor(s) and others. A full page of references are included. Or just directly download the ACE questionnaire here.
***2 Free ACE Fact Sheets
What Your ACE Score Means
When the first results of the ACE study were analyzed in the 1990s, Felitti and Anda were stunned. “I wept,” Dr. Anda says. “I saw how much people had suffered and I wept” (3)Huff Post, Part Two.
What they saw was that experiences like these are staggeringly common (4)Felitti 1998: Full Text. These results have been replicated throughout the U.S. and around the world in the past 20 years since the first ACE study was published (5)Hughes, K., et al. (2017). “The effect of multiple adverse childhood experiences on health: a systematic review and meta-analysis.” Lancet Public Health 2(8): e356-e366.
- 50% of adults in the first ACE study and later studies have experienced one or more ACEs
- 1 person in 4 grew up in a household with a person addicted to substances such as alcohol or recreational drugs
- 1 in 10 grew up witnessing domestic violence
- 2 in 10 individuals here in the United States have been sexually abused
- 3 in 10 have been physically abused.
- 1 in 6 has a score of 4 or more
- People with a score of 6 or more, like Mason, have a life expectancy that is 20 years shorter than people with no ACEs.
- Participants with these scores are not just the poor or the disenfranchised. The original study participants were a lot like Mason and many were even better off. They were 80% white (including Latino), 10% black, and 10% Asian. Most were middle class, college educated and had good jobs and health insurance.
The percentage of individuals who have experienced ACEs like Mason from the movie Boyhood (I’ll tell you about his story below) is shocking.
So is the link between adverse childhood experiences and chronic illness, which I’ll describe after Mason’s story.
You can listen to Dr. Felitti’s description of the questions in this 10 minute video below and the degree of compassion he expresses about what the research has shown us.
What are Adverse Childhood Experiences?
The Adverse Childhood Experiences (ACE) research refers to what now involve hundreds if not thousands of studies in the U.S. and around the world (6)Hughes, K., et al. (2017). “The effect of multiple adverse childhood experiences on health: a systematic review and meta-analysis.” Lancet Public Health 2(8): e356-e366 conducted in the past 25 years. Results have been reproduced in over 35 states and in Washington DC. They explore the relationship between difficult childhood events and chronic behavioral, mental and physical health problems in adult life.
An informative 3 Part series on ACEs in the Huffington Post calls it the largest, most important public health study you never heard of (7)Stevens, J.E., Part One, (8)Stevens, J.E., Part Two, (9)Stevens, J.E., Part Three, (10)The author’s blog is a source for up to date information about ACEs, called ACEStooHigh.
Despite the overwhelming clarity of the findings, the large number of participants (17,000) and ongoing findings with existing patients; despite the study being both retrospective (getting information using surveys of participants’ childhood experiences) and prospective (following the first group of 17,000 participants and 450,000 others now for 15 years at Felitti’s clinic), the results have largely been met by the medical community with silence (Huff Post series, Part Two) (11)as mentioned in the video clip above and updated to 450,000 in a personal communication with Dr. Felitti in April 2018.
Dr. Vincent Felitti, chief of the Department of Preventive Medicine at Kaiser Permanente, first came upon the link between adverse childhood experiences and chronic illness as well as other forms of reduced health in adults by accident. In the 1980s he was trying to understand the 50% dropout rate in his weight loss clinic and decided to interview people to learn why. After weeks of interviews with people who had left the program he misspoke one day. He was completely surprised by the answer (Huff Post series, Part One):
“Instead of asking, “How old were you when you were first sexually active,” I asked, “How much did you weigh when you were first sexually active?’ The patient, a woman, answered, ‘Forty pounds.'” He didn’t understand what he was hearing. He misspoke the question again. She gave the same answer, burst into tears and added, “It was when I was four years old, with my father.”
Felitti and his colleagues discovered that more than 50% of the people who were struggling with being overweight had a history of sexual abuse, molestation and / or rape in childhood. They were greatly disturbed by these overwhelmingly common findings and the fact that no one in the medical community knew about it – or believed them when they presented their research.
The Huffington Post articles describe the process that lead to the first ACE study, which found that traumatic events in childhood greatly increased risk for all kinds of chronic health problems later in life, from diabetes, stroke, cancer, being overweight, heart disease and chronic lung disease to substance abuse and other addictions, to depression, anxiety and attempted suicide.
Here are the childhood events that the ACE studies have been measuring through the use of the ACE score (12)see more information, charts, and graphics on the ACEStooHigh blog.
An example of ACEs in The Movie “Boyhood”
The Oscar-nominated movie Boyhood (13)more on wiki received great acclaim for the daring risks taken by filming it over a 12 year period. I loved seeing the main character, Mason, come of age. But in spite of this element, I found it painful to watch a child growing up in a troubled household and couldn’t understand why people liked it so much (14)Bob Cesca presents a witty summary, “It’s Okay If You Didn’t Like ‘Boyhood’” that pretty much sums up all the other reasons I didn’t like it.
In the opening scene we meet 6-year-old Mason some time after his mother Olivia has separated from his free-wheeling, irresponsible, sometime-musician father. Over time, his parents make some important life changes. She trains as a psychologist and makes a career for herself. He maintains a relationship with his kids and eventually remarries, although he feels constrained in life. Olivia’s 2nd and 3rd marriages are both to alcoholics. Step-dad #1 has outbursts of rage and we (and the kids) come upon Olivia crying as she lies on the garage floor at one point, with the implication that she’s been physically assaulted and knocked down by her husband. In the end, Mason heads to college and Olivia is left with a feeling of terrible empty meaninglessness in her life.
Mason Has an ACE Score of 6
Based on the ACE questionnaire, Mason has an ACE score of 6:
- Psychological Abuse (did a parent or other adult in the household often or very often…act in a way that made you afraid that you might be physically hurt?)
- Emotional Neglect (did you often or very often feel that your family didn’t look out for each other, feel close to each other, or support each other?)
- Loss of a Parent (Mason lived through 3 divorces in childhood, although together they still count as 1 point)
- Mother Treated Violently (by step-dad #1 ie: domestic violence)
- Substance Abuse (step-dad #1 and step-dad #2)
- Mental Illness (any one or all of Mason’s 4 parents may have met criteria for a mental illness such as depression or PTSD (step-dad #2 was also an Iraqi war veteran)
12.5% of the U.S. population has an ACE score of 6 or higher.
Movie reviews and commenters frequently describe an appreciation for how Mason survives his difficult childhood through “resilience and adaptability” and how they liked seeing him make it into adulthood intact.
Ethan Hawke, who plays Mason’s father and who is both divorced and the child of divorced parents in his personal life (15)loss of a parent from divorce or separation is one of the ACEs and gives him an ACE score of at least one from his childhood. It also gives his children an ACE score of 1 since he is divorced as well, tells Charlie Rose in an interview that he related to the way this movie normalizes the fact that we all have secrets.
For Hawke, Boyhood conveys the message that coming from a broken home doesn’t mean there’s something wrong with you. Instead, he finds that it helps you see how no one really has a normal family.
I agree that we are not what happened to us.
Mason’s life is common in our culture, but that does not actually make it “normal.” Nor does his apparent resilience mean that he has fully escaped potential long-term adverse effects.
The ACE studies show us that Mason is actually at high risk of having many difficulties in his adult life, including being at increased risk of developing a chronic illness, dying at a much younger age than his peers who have lower scores, being hospitalized for an autoimmune disease, being depressed, and having difficulties of his own with alcohol or other addictions, among other effects.
We are developing helpful tools for addressing the effects of trauma as well as for preventing many kinds of trauma.
For a powerful example at the community level, see the 2016 trio of articles in the NYT about the inexpensive implementation of “trauma-informed” practices in a few small towns and the tremendous impact early intervention has had on community life, levels of violence, teen pregnancy, suicide rates and school attendance.
Such approaches also contribute to reducing risk for the effects that often show up much later, including chronic illness in adulthood.
As we get better at recognizing trauma in all the different ways it can show up, we can begin to better work with it, including as a way to improve health and symptoms in those of us living with chronic illness.
The World is Beginning to “Get It” About ACEs
We now have incontrovertible evidence linking adverse childhood experiences and chronic illness.
The Adverse Childhood Experiences (ACE) studies are being replicated and increasingly mentioned around the world. The studies have been discussed on National Public Radio (16)Starecheski, L., Take The ACE Quiz — And Learn What It Does And Doesn’t Mean, in National Public Radio. 2015: Washington, D.C. NPR Science Desk: Shots., (17)Starecheski, L., Can Family Secrets Make You Sick?, in National Public Radio: What Shapes Health. 2015, National Public Radio (NPR): Washington, D.C. NPR Science Desk: Shots, (18)Starecheski, L., 10 Questions Some Doctors Are Afraid To Ask, in National Public Radio: What Shapes Health. 2015, National Public Radio (NPR): Washington, D.C. p. NPR Science Desk: Shots, (19)Starecheski, L., A Sheriff And A Doctor Team Up To Map Childhood Trauma, in National Public Radio: What Shapes Health. 2015, National Public Radio (NPR): Washington, D.C. p. NPR Science Desk: Shots. and other news channels, in The New York Times and Huffington Post. Prince Harry has begun talking about the effects of his mother’s death when he was 12 years old and his family is explaining how it’s time to stop judging mental illness and emotional symptoms. Pediatrician Nadine Burke Harris introduced ACEs in a TED talk (here’s the transcript of her talk) and has a terrific book explaining how ACEs affect our nervous system, immune system and much more. It’s just out in 2108 and is called The Deepest Well. If you read just one book about trauma, that’s the one to get.
ACEs make it likely a person will have at least one physical, one emotional AND one developmental symptom and have a significantly higher need for health and medical care, including emergency care and hospitalizations.
ACEs show, with remarkable clarity, that different types of trauma in early life are important risk factors for poor health in adulthood, including autoimmune and other chronic diseases of all kinds (20)learn more on the ACE website; see findings grouped by category on the CDC’s website.
Links between adverse childhood experiences and chronic illness are what I mainly focus on in this blog and post since links between trauma or adversity and chronic illness is the main focus of my blog.
The higher our ACE scores, the greater our risk of developing a chronic health condition.
ACEs are higher in minority groups (Black, Hispanic, Multiracial, low income, unemployed, gay, bisexual…)
Adverse Childhood Experiences and Chronic Illness
Risk for Chronic Illness is Affected by Our ACE Scores
Felitti and his colleagues’ studies show that childhood trauma is a critical and prominent factor affecting risk for chronic diseases of all kinds.
7 out of the top 10 causes of death in the US are caused by chronic diseases according to the CDC and half of the adults in the US have a chronic illness.
1 in 4 people have two or more chronic health conditions.
Nearly 1 child in 10 is limited by a chronic disease (National Health Council).
Chronic diseases, like childhood trauma, are difficult to see by looking at a person. The website for Invisible Illness Awareness Week states that “96% of people who live with an illness have an illness that is invisible.” Learning to understand the role of trauma in our lives is a way to begin to shed the cloak of invisibility. Acknowledging the difficult events that have happened in our lives, and finding ways to work with them, is how we can become more whole, and begin to come back into the world.
Risk for chronic illness is especially high when a person has experienced 4 or more ACEs. With a score of 4 or more, risk for diabetes goes up 1.6 fold, doubles for cancer and heart disease, and quadruples for chronic lung disease. But even an ACE score of 2 is significant.
Risk for Autoimmune Disease Increases with ACE Scores of 2
Risk for the 80 or more types of autoimmune diseases increases as ACE scores rise.
For every increase in the ACE score of 1 point, risk for developing an autoimmune disease such as type 1 diabetes, lupus, rheumatoid arthritis and many others goes up by 20% (21)Dube, S.R., et al., Cumulative Childhood Stress and Autoimmune Diseases in Adults. Psychosom Med, 2009, 71(2) p. 248; Full Text. An ACE score of only 2 or more increases the chances of being hospitalized for an autoimmune disease by 70 to 80%. Dube and Felitti et al found that:
childhood stressful events may increase ADs (autoimmune diseases) independently as well as amplify the effect of other environmental factors, such as infections.
Chronic Fatigue and Fibromyalgia
While I’ve seen no mention of chronic fatigue specifically in an ACE study yet, other researchers have found higher rates of childhood physical, sexual and emotional abuse in this population (22)Borsini, A., et al., Childhood stressors in the development of fatigue syndromes: a review of the past 20 years of research. Psychol Med, 2013, 44(9): p. 1809-23 as well as links to very early trauma in the field known as developmental programming / fetal origins of adult disease
In these conditions, lowered cortisol is not due to any adrenal or pituitary insufficiency. These changes reflect a plausible early-life adaptation to increase the persistence of active cortisol in liver (to maximize fuel output) and kidney (to increase salt retention) without elevation of circulating levels, thus avoiding their deleterious effects on brain and muscle.
The article has an unfortunate title linking ME/CFS with stress and psychiatric diseases, which I do not find ME/CFS to be, even as it shows that links to such illnesses are biologically based. Yehuda, R. and J. Seckl (2011). “Minireview: Stress-related psychiatric disorders with low cortisol levels: a metabolic hypothesis.” (23)Endocrinology 152(12): 4496-4503.
There are at least 3 research studies showing that ACEs and other adverse events in childhood are risk factors for Fibromyalgia (24)Borsini A, Hepgul N, Mondelli V, et al. Childhood stressors in the development of fatigue syndromes: a review of the past 20 years of research. Psychol Med 2013;44(9):1809-23. doi: 10.1017/S0033291713002468, (25)Olivieri P, Solitar B, Dubois M. Childhood risk factors for developing fibromyalgia. Open access rheumatology : research and reviews 2012;4:109-14. doi: 10.2147/OARRR.S36086, (26)Varinen A, Kosunen E, Mattila K, et al. The relationship between childhood adversities and fibromyalgia in the general population. J Psychosom Res 2017;99:137-42. doi: 10.1016/j.jpsychores.2017.06.011.
To get a quick summary of what the ACE studies are, important facts and stats about ACEs and the questionnaire, you can download one or both ACE fact sheets I’ve created. You can give these to your doctor, teacher, lawyer, friends and family and others or just use it for yourself to know what ACEs mean. You can also learn more in my post about the ACE Fact Sheets to educate your doctor.
ACE Score, Behaviors & Psychological Health
Like family physician Gabor Mate and author Johann Hari, Felitti discovered from his patients that behaviors such as addictions to drugs, food, and alcohol (among others) are ways of coping with overwhelming feelings from unresolved trauma rather than an addiction to a chemical substance (27)Felitti, V.J., Adverse childhood experiences and adult health. Acad Pediatr, 2009. 9(3): p. 131.
Difficult events make us want to keep the door closed to the past (28)Felitti video 10 minute presentation with assembly member Sandre Swanson on prisons and schools but when not resolved, the past influences the present and creates havoc in our lives – including very real, physiological and biological changes that are not about underlying personality or behavioral or psychological problems so commonly associated with our limited general understanding of trauma and PTSD.
Old traumatic events tend to be unrecognized and dismissed by our culture. And they remain grossly underestimated in our medical health care system. The ACE studies give us the information we need to begin to take it seriously for ourselves and for our children.
Recognizing Symptoms of Trauma in Chronic Illness
The findings in the ACE studies reflect patterns commonly seen in trauma of all kinds. These effects are not limited to PTSD but also include the very real physiological, biochemical and nervous system patterns that underlie chronic illnesses of all kinds. For more on the characteristics, see my post that integrates the disparate research into one integrated perspective in The Chronic Illness & Trauma Connection: Summary of the Science.
The Delay Between Trauma and Symptom Onset (Latency Periods)
Some symptoms may be seen immediately or very soon after traumatic events occur, such as in children who experience nightmares, have difficulty concentrating in school or who act out. Chronic physical illness, however, may not manifest for decades. This delay, often referred to as a latency period in the literature, is a large part of why identifying links between trauma and chronic illness have been so under-recognized and so difficult to identify.
The relationship between childhood experiences and adult health status is likely to be overlooked in medical practice because the time delay between exposure during childhood and recognition of health problems in adult medical practice is lengthy (29)Felitti, 1998, p. 256.
The ACE studies underscore the concept that long stretches of time can occur between a traumatic event and the onset of psychological, behavioral or physical symptoms. The average age of study participants was 57 years old (30)Felitti, 1998 and the traumas they divulged on their surveys occurred decades before the onset of their chronic diseases. They had been kept secret out of shame, social taboos and time.
Effects of ACEs Add Up Over Time
Having an ACE score of 4 does not just increase one’s risk 4 fold – it can increase it by much, much more.
A person with a score of 4, for example is 12 times more likely to attempt suicide than a person with a score of 0 (31)Felitti, 1998.
If a person’s score is 6, like Mason’s, the risk of attempted suicide jumps 46 fold. This is an example of how trauma is additive in powerful and unexpected ways.
A second factor in the compounding effects of trauma is that if you are exposed to one adverse childhood event, you are also likely to be exposed to others – 65% to 93% more likely in fact (32)Felitti, 1998. As we see in Boyhood, Mason was not only a witness to domestic violence, he was also exposed to psychological abuse, substance abuse, and divorce. This is not uncommon. A child exposed to domestic violence is 85% more likely to have exposure to at least one other ACE (33)Felitti, 1998.
In contrast to what we might tend to think, Mason has not emerged from his childhood unscathed. In addition to all the other challenges he may face with emotional distress, risk behaviors and chronic physical illness, Mason’s ACE score of 6 is associated with a life expectancy that is shortened by 20 years.
Parental Trauma and Adverse Multigenerational Experiences (AMEs)
The ACE studies indirectly highlight the fact that parents who are abusive or neglectful, who are substance abusers or have mental illness or are incarcerated etc, are very likely trauma survivors themselves.
Such symptoms in parents reflect unresolved trauma.
Such behaviors and symptoms also often serve as coping mechanisms in the face of life events that were too overwhelming to deal with in other ways (34)Felitti, V.J., et al., Obesity: Problem, Solution, or Both? The Permanente Journal, 2010. 14(1): p. 7.
Through detailed calculations, the ACE studies have demonstrated that events that create ACEs in children are the same types of events experienced by their parents in their own childhoods.
More than 50% of risk for violent and abusive behaviors and difficult emotions inflicted by parents on their own children, are attributable to ACEs.
The behavioral, psychological and physical health problems of parents directly affect the health of their children. As seen on the slide above, 52% of adults who are victims or perpetrators of domestic violence (35)see more ACEstooHigh have experienced ACEs in their own childhoods. 65% of adults who self-report to be alcoholics have experienced an ACE. Mason’s parents all are very likely to have high ACE scores themselves.
Trauma in Parents Increases Risk for Trauma in Children
As mentioned above, adults who experienced ACEs in childhood have frequently grown up with parents who were traumatized. This is one way in which trauma can perpetuate its effects over generations.
Rachel Yehuda, Ph.D., is a Professor of Psychiatry and Neuroscience and Director of the Traumatic Stress Studies Division at the Mount Sinai School of Medicine. She has found that children of Holocaust survivors are more vulnerable to posttraumatic stress disorder (PTSD) than kids who grow up with non traumatized parents.
This is true even though both groups of children were exposed to similar numbers and intensity of life events (36)Yehuda, R., et al., Vulnerability to posttraumatic stress disorder in adult offspring of Holocaust survivors. Am J Psychiatry, 1998. 155(9): p. 1163-71..
The Freeze Response and ACEs
Research is ongoing to better understand the role of nervous system changes, immune system responses and other long-term physiological consequences of trauma, looking for the freeze response is another way to understand potential mechanisms.
In one scene in Boyhood, the freeze response is readily visible. Alcoholic step-dad #1 creeps into a rage-filled drinking splurge at dinner time one day. He is itching for a fight. We watch him challenge the kids and Olivia with questions as they try to eat their meals at the dinner table. No one makes eye contact or says a word unless spoken to because any wrong move could escalate his behavior and place someone at risk of physical harm. They are all “frozen.” Olivia is immobilized and unable to protect her children because she too, is at risk of being physically abused by her husband (and already has been). This scene shows us what a freeze response looks like and how it can affect everyone in the family system.
The freeze response is the default mechanism of survival when no other option exists. It is a hallmark of trauma. No one is physically strong enough to fight this big, angry man. No one is going to be able to run or get away or make it out the front door. The freeze response is one of the ways that our nervous systems take on new patterns of functioning. According to Peter Levine and others in the field of trauma therapy (37)see more in the post on Trauma therapy with a Dog Named Kane, it’s what underlies and drives the long-term symptoms that follow trauma.
Here’s a detailed guide about trauma’s effects on genes and the nervous system and how adversity shapes health and risk for chronic illness.
You can learn more about the freeze response and recent research identifying a cell danger response as an underlying mechanism in our mitochondria in this post about chronic fatigue syndrome (ME/CFS) or in my personal story.
How to Heal from Adverse Childhood Experiences and Chronic Illness
Dr. Robert Anda presenting at a conference in Alaska
ACEs Affect Genes Through Epigenetics
Adverse childhood experiences alter how genes behave through epigenetics (38)Romens, S. E., et al. (2015). “Associations between early life stress and gene methylation in children.” Child Development 86(1): 303-309, (39)Papale, L. A., et al. (2018). “Differentially Methylated Genes in Saliva are linked to Childhood Stress.” Scientific Reports 8(1): 10785. This is a process by which small chemicals attach to the surface of genes to influence how they express themselves. The chemicals attach and detach based on environmental factors such as stress and diet, exercise and trauma.
While epigenetic changes can last a decade or a lifetime, the beauty is that they are sometimes (often?) reversible (here’s an introductory post). Healing trauma is one way of reversing epigenetic changes caused by ACEs (40)Yehuda, R., et al. (2014). “Lower Methylation of Glucocorticoid Receptor Gene Promoter 1 in Peripheral Blood of Veterans with Posttraumatic Stress Disorder.” Biological Psychiatry.
Adverse life experiences, infections, toxins and other exposures that overwhelm our body’s ability to escape and overcome threat also trigger a cell danger response (CDR). The CDR is regulated by the nervous system, happens at the cellular level of defense, is affected by epigenetics, and has been proposed to underlie over 100 different diseases (41)Naviaux, R. K. (2014). “Metabolic features of the cell danger response.” Mitochondrion 16: 7-17.
These 10 tools offer additional ways that are sufficient for some to improve from or heal chronic disease.
Tips on Healing ACEs
In the video above, Dr. Robert Anda is presenting at a conference in Alaska Acting in the Larger Community.
Some communities, organizations and states are beginning to implement evaluation, prevention and treatment strategies for ACEs (42)see this 1.5 hour conference presentation by Dr. Robert Anda,et al. How can University of Alaska Ancourage (UAA) help address ACES? What do Future Leaders need to Know? 2012. Ancourage, Alaska: University of Alaska Ancourage, (43)Robert Wood Johnson Foundation, (44)more on wiki and much more is needed (45)Even this article is from 1998 I suspect it still applies: Whitfield, C.L., Adverse childhood experiences and trauma. Am J Prev Med, 1998. 14(4): p. 361-4, Abstract. Dr. Felitti emphasizes that it is challenging: (46)Felitti, V.J., Adverse childhood experiences and adult health. Acad Pediatr, 2009. 9(3): p. 131:
A serious question is what primary prevention would look like. One suspects that improving parenting skills across the nation might be the crucial issue here. The number of adults is myriad —including physicians—who have had no firsthand experience of supportive parenting. How might we address that serious lack on a population basis? The impact of a successful approach here might be as great as that of a major vaccine. Resistance to obtaining and acting on this information from childhood is to be expected. It will be the result of several factors: the awakening of personal ghosts, discomfort in breaking taboos, lack of training or knowledge, concern over upsetting parents, and perceived lack of time and reimbursement.
Informing the Public and those with Chronic Illness. For those of us with chronic illness, it is important to learn about this information so that we can take our health into our hands without having to wait any longer (47)see more about trauma therapies in 10 Under-utilized Tools for Treating Chronic Illness. Doctors and insurance companies, like many of us and our society at large, find this topic intimidating and difficult to explore, let alone embrace. Felitti believes that educating and empowering the population is the most powerful way to stimulate change, as we are a market force (48)see this 1.5 hour conference presentation by Dr. V. J. Felitti, The Relationship of Adverse Experiences to Adult Health Status. in The Child Trauma Treatment Network of the Intermountain West. 2003. Snowbird Conference Center, Salt Lake City, UT: Primary Children’s Health Center for Safe and Healthy Families and the Division of Child and Protection and Family Health of the Department of Pediatrics at the University of Utah School of Medicine in Salt Lake City and can be the ones who create change by voting with our wallets and influencing the direction of the tide with our feet and words and experiences.
Boyhood provides an example of how ACEs occur in all walks of life, in full view of friends, family and neighbours. And how trauma has been normalized and lives under our radars. Simply by knowing Mason’s ACE score of 6 we learn that he’s actually at risk for experiencing significant difficulties with health, work, and intimate relationships in adulthood.
The ACE studies can revolutionize how we perceive substance abuse, violence and depression, and chronic illness. Instead of asking “what’s wrong with you,” Robert Anda suggests that the ACE studies help us change the question, and to stop the shaming and blaming. They are helping us reorient to a place of compassion. The new question in trauma-informed therapy (49)Dr. Anda introduces this in his presentation at about the 25 minute mark is becoming, “what happened to you?”
Imagine what it would be like if doctors treated us – whether we have a chronic physical or mental illness or are suffering the consequences of an addiction – with such compassion.
Imagine if Mason’s mother had been given support. If someone had noticed the day Mason and his sister had changed schools and worn the same clothes two days in a row. If someone had asked his parents what had happened to them and offered to help them treat their own unresolved traumas.
Imagine if someone had recognized the pain and unanswered questions that Mason experienced throughout his childhood, and had helped him cope with it.
Imagine sitting in a doctor’s office – of someone who knows about these well-established links between adverse childhood experiences and chronic illness. Of having them ask “What happened to you?” with compassion as they seek to better understand the origins of our symptoms. If you need a dose of a kind, compassionate doctor who understands, consider watching one of the presentations given by Drs. Felitti (50)here’s a 9 minute video that includes brief stories from some of Dr. Felitti’s patients and is embedded below; a 13 minute presentation about ACEs and a 1.5 hour lecture at a Utah medical conference in 2003 and Anda (51)presentation at Alaskan conference. They are a balm.
Health journalist Christine Cissy White describes how she uses her ACE score in medical appointments. By giving her score she conveys the significance of her history as an important risk factor regarding her health (and educating many of her providers at the same time) without having going into detail about her past traumas. This is especially helpful with health care professionals with whom she has no established relationship.
9 minute presentation by Dr. Felitti which includes some patients’ personal stories
What if My ACE Score is “0”?
The links between adverse childhood experiences and chronic illness are more important than even the ACE studies suggest. The ACE studies do not look for every kind of trauma that may have happened in childhood. What is being discovered is that the links between adverse childhood experiences and chronic illness are not limited to events that appear to be overtly traumatic or that involve violence.
Many other types of trauma also affect risk for chronic illness.
A few examples of other kinds of trauma linking adverse childhood experiences and chronic illness include events such as
- hospitalizations (as described in this post on cystitis) and surgeries,
- accidents and falls
- experiences of being bullied, shamed, judged or blamed by family members but also by others;
- emotional and physical neglect;
- loss of people close to us other than our parents, including siblings and friends, as well as the loss of beloved pets;
- living in war zones or refugee camps;
- growing up away from home (such as on a reservation or in another form of boarding school) and/or being forced to attend school or live in environments that negate your culture and beliefs;
- living amidst inner city violence,
- and much more
For more, see Jane Ellen Steven’s blog post from ACES too High about the larger picture and how a broad variety of traumatic events all have similar effects.
You’ll also find hundreds of people sharing their stories and learn about their relief on discovering the science linking adverse childhood experiences and chronic illness in Donna Jackson Nakazawa’s blog post on ACEs and chronic illness.
My Updated ACE Score (Was 0 Now 2)
I used to think, only a few years ago when I first wrote this article, that my ACE score was zero.
In this January 2021 update I want to tell you that over the years and as a result of working with and healing trauma, I have come to see that I have an ACE score of 2 and another set of adversities in childhood that I refer to as “ACEs+” (I share the details in My Story).
ACEs Plus (ACEs+)
ACEs+ addresses the limitations of ACEs by opening up the types of trauma that affect health from the original 10. Many of what I see as “ACEs+” are subtle versions of the original ACEs. The realization stems from beginning to recognize through personal experiences in working with and healing from my chronic illness. Our nervous systems don’t necessarily tell the difference between threat from a parent who is emotionally unavailable for a year or two because of postpartum depression, for example (which fits in the category of parental mental illness and is an ACE) compared with a parent who suffers from lifelong depression, bipolar illness or schizophrenia. Nor do our nervous systems necessarily tell the difference between spanking and other forms of physical abuse (this is an ACEs+ because spanking is not included as an ACE in the ACEs questionnaire). The difference lies more in terms of “dose” than in whether covert or overt ACEs have an impact.
As you see in my own gradual awakening, many ACEs and ACEs+ can involve more subtle experiences that are difficult to recognize as anything but normal. It’s what to consider when you have a chronic illness and you think you haven’t experienced any adversity. Because it’s not about comparing our histories to others who “had it so much worse.” It’s about learning how our own experiences impacted our nervous systems and bodies so we can heal.
I write about one particularly difficult ACE to recognize known as emotional neglect. Its effects are so important and widespread that I give it its own category. I introduce the topic of emotional neglect in this post called “Chronic Illness and Invisible ACEs. When your ACE score is Zero.“
***Free eBooks 1 and 5 (ACEs)
Chronic Illness, Trauma and the Nervous System: Essential Guide to Quelling the Volcano
Chronic Illness ACE Fact Sheets To Educate Your Doctor (Free Downloads)
The Chronic Illness Model: 11 Characteristics of Trauma and Early Life Events that Affect Risk for Chronic Illness
Risk for Rheumatoid Arthritis: the Role of Trauma in Childhood
10 Tools For Treating Chronic Illness From a Trauma Perspective
Treating Chronic Illness by Healing Invisible Adverse Childhood Events (ACEs) with Trauma Therapy
What’s Your Story? Leave a Comment
Are there links for you between adverse childhood experiences and chronic illness?
Does this research help make sense of your symptoms, your life, your relationships or health?
What’s your ACE score and what type of chronic illness(es) do you have? Has healing from trauma made any difference for you?
Leave a comment. Every comment helps me to adjust and refine this perspective about the role of ACEs in chronic illness and how it provides opportunities for healing.
|↑1||Felitti, V.J., et al., Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults. The Adverse Childhood Experiences (ACE) Study [see comments]. Am J Prev Med, 1998. 14(4): p. 245-58. Full Text|
|↑2||Huff Post Part Three|
|↑3||Huff Post, Part Two|
|↑4||Felitti 1998: Full Text|
|↑5, ↑6||Hughes, K., et al. (2017). “The effect of multiple adverse childhood experiences on health: a systematic review and meta-analysis.” Lancet Public Health 2(8): e356-e366|
|↑7||Stevens, J.E., Part One|
|↑8||Stevens, J.E., Part Two|
|↑9||Stevens, J.E., Part Three|
|↑10||The author’s blog is a source for up to date information about ACEs, called ACEStooHigh|
|↑11||as mentioned in the video clip above and updated to 450,000 in a personal communication with Dr. Felitti in April 2018|
|↑12||see more information, charts, and graphics on the ACEStooHigh blog|
|↑13||more on wiki|
|↑14||Bob Cesca presents a witty summary, “It’s Okay If You Didn’t Like ‘Boyhood’” that pretty much sums up all the other reasons I didn’t like it|
|↑15||loss of a parent from divorce or separation is one of the ACEs and gives him an ACE score of at least one from his childhood. It also gives his children an ACE score of 1 since he is divorced as well|
|↑16||Starecheski, L., Take The ACE Quiz — And Learn What It Does And Doesn’t Mean, in National Public Radio. 2015: Washington, D.C. NPR Science Desk: Shots.|
|↑17||Starecheski, L., Can Family Secrets Make You Sick?, in National Public Radio: What Shapes Health. 2015, National Public Radio (NPR): Washington, D.C. NPR Science Desk: Shots|
|↑18||Starecheski, L., 10 Questions Some Doctors Are Afraid To Ask, in National Public Radio: What Shapes Health. 2015, National Public Radio (NPR): Washington, D.C. p. NPR Science Desk: Shots|
|↑19||Starecheski, L., A Sheriff And A Doctor Team Up To Map Childhood Trauma, in National Public Radio: What Shapes Health. 2015, National Public Radio (NPR): Washington, D.C. p. NPR Science Desk: Shots.|
|↑20||learn more on the ACE website; see findings grouped by category on the CDC’s website|
|↑21||Dube, S.R., et al., Cumulative Childhood Stress and Autoimmune Diseases in Adults. Psychosom Med, 2009, 71(2) p. 248; Full Text|
|↑22||Borsini, A., et al., Childhood stressors in the development of fatigue syndromes: a review of the past 20 years of research. Psychol Med, 2013, 44(9): p. 1809-23|
|↑23||Endocrinology 152(12): 4496-4503|
|↑24||Borsini A, Hepgul N, Mondelli V, et al. Childhood stressors in the development of fatigue syndromes: a review of the past 20 years of research. Psychol Med 2013;44(9):1809-23. doi: 10.1017/S0033291713002468|
|↑25||Olivieri P, Solitar B, Dubois M. Childhood risk factors for developing fibromyalgia. Open access rheumatology : research and reviews 2012;4:109-14. doi: 10.2147/OARRR.S36086|
|↑26||Varinen A, Kosunen E, Mattila K, et al. The relationship between childhood adversities and fibromyalgia in the general population. J Psychosom Res 2017;99:137-42. doi: 10.1016/j.jpsychores.2017.06.011|
|↑27, ↑46||Felitti, V.J., Adverse childhood experiences and adult health. Acad Pediatr, 2009. 9(3): p. 131|
|↑28||Felitti video 10 minute presentation with assembly member Sandre Swanson on prisons and schools|
|↑29||Felitti, 1998, p. 256|
|↑30, ↑31, ↑32, ↑33||Felitti, 1998|
|↑34||Felitti, V.J., et al., Obesity: Problem, Solution, or Both? The Permanente Journal, 2010. 14(1): p. 7.|
|↑35||see more ACEstooHigh|
|↑36||Yehuda, R., et al., Vulnerability to posttraumatic stress disorder in adult offspring of Holocaust survivors. Am J Psychiatry, 1998. 155(9): p. 1163-71.|
|↑37||see more in the post on Trauma therapy with a Dog Named Kane|
|↑38||Romens, S. E., et al. (2015). “Associations between early life stress and gene methylation in children.” Child Development 86(1): 303-309|
|↑39||Papale, L. A., et al. (2018). “Differentially Methylated Genes in Saliva are linked to Childhood Stress.” Scientific Reports 8(1): 10785|
|↑40||Yehuda, R., et al. (2014). “Lower Methylation of Glucocorticoid Receptor Gene Promoter 1 in Peripheral Blood of Veterans with Posttraumatic Stress Disorder.” Biological Psychiatry|
|↑41||Naviaux, R. K. (2014). “Metabolic features of the cell danger response.” Mitochondrion 16: 7-17|
|↑42||see this 1.5 hour conference presentation by Dr. Robert Anda,et al. How can University of Alaska Ancourage (UAA) help address ACES? What do Future Leaders need to Know? 2012. Ancourage, Alaska: University of Alaska Ancourage|
|↑43||Robert Wood Johnson Foundation|
|↑44||more on wiki|
|↑45||Even this article is from 1998 I suspect it still applies: Whitfield, C.L., Adverse childhood experiences and trauma. Am J Prev Med, 1998. 14(4): p. 361-4, Abstract|
|↑47||see more about trauma therapies in 10 Under-utilized Tools for Treating Chronic Illness|
|↑48||see this 1.5 hour conference presentation by Dr. V. J. Felitti, The Relationship of Adverse Experiences to Adult Health Status. in The Child Trauma Treatment Network of the Intermountain West. 2003. Snowbird Conference Center, Salt Lake City, UT: Primary Children’s Health Center for Safe and Healthy Families and the Division of Child and Protection and Family Health of the Department of Pediatrics at the University of Utah School of Medicine in Salt Lake City|
|↑49||Dr. Anda introduces this in his presentation at about the 25 minute mark|
|↑50||here’s a 9 minute video that includes brief stories from some of Dr. Felitti’s patients and is embedded below; a 13 minute presentation about ACEs and a 1.5 hour lecture at a Utah medical conference in 2003|
|↑51||presentation at Alaskan conference|
Really interesting study! I have often wondered whether my chronic illnesses have come from some childhood creation rather than a genetic predisposition etc! great article!
I’m so glad this article planted some potentially useful seeds. I think we’re going to be learning a lot more about the role of life events in chronic illness in the upcoming years… the research seems to be springing up in all sorts of places.
Tony Madrid says
Bravo! Great explanation of ACE and its relationship to adult illnesses and psychological problems. I’m going to send this to the staff here. This posting shows in such a compelling way that childhood experiences contribute to adult problems, even decades later.
Thank you for this.
Tony Madrid, Ph. D.
The data is truly compelling, isn’t it? Even though I knew about it before this post I learned a lot in the writing and researching of it; and see it even more at play now – watching characters in TV and movies, thinking of people I’ve met, being curious about the person I’m interacting with at the store … it helps me think from a much larger (and even more non-blaming) perspective.
Ross Lane says
Thank you! My ACE score is 6+ and my siblings’ would be similar. I realize now (at age 69) that my childhood was very traumatic. This realization came through my recovery from drug addiction. I believe my addiction (all my siblings were addicts too) was a direct result of the trauma I suffered from the day I was born-it was a way to cope. I believe I have PTSD from the trauma and it manifests itself to this day in certain situations that bring up fear and cause me to “freeze” and my heart to go into atrial fibrillation. The twelve step progam of Narcotics Anonymous has helped me gain freedom from my active addiction and given me a life worth living today but I still suffer from the wounds of childhood trauma. It is so heartening to see that progress is being made in this area of medicine and that there is hope that younger people will someday get help for this awful problem! Thank you for your compassion and love.
Veronique Mead says
Hi Ross, Thank you so much for sharing some of your story and experience. Yes – it is indeed truly heartening to see this information coming to light. Addictions are very commonly linked to ACEs, even though it remains so infrequently recognized in our medical community. Congratulations on your recovery – it can be very challenging work to move through and find our ground in new ways when we haven’t had enough of it or any of it in the past. And I do think that recovery from the wounds may be lifelong work – albeit life changing and hugely rewarding work, as you describe.
It sounds like the understanding you have of your freeze state gives you some context for your afib. For me it’s been hugely helpful to have a context for my own symptoms and helps me stay more positive and encouraged and engaged with the process of healing.
Have you found ways to then work with the afib or does your heart rate recover when you recover from your state of freeze?
Wishing you all the best and sending my love back to you!!
Ross Lane says
Thank you for your response-I was not expecting one!
I agree that recovery is a lifelong process, that I’ll never be “cured” but my life is sooo much better now that I’m in recovery!
As for my afib, it does pass eventually when I remove myself from situations that cause it, thankfully. But I find the feeling is so disturbing that I will go to great lengths to avoid situations that cause it. That keeps me somewhat isolated and limits my life but at least I have an idea what’s happening to me. Someday maybe I’ll find a way to work through my freeze response.
Thanks for your help!
Veronique Mead says
Hurray for life being soooo much better – reaping is a wonderful thing! In case you haven’t looked into body-based ways of working through trauma, check out some of the therapies I highly respect – it could be a way to work through freeze and maybe it could help your afib as well. Thanks for letting me know and best to you!!
Hello , I’m a 58 yr old Hispanic female. I am an only child and had a childhood full of toys , trips and was never physically abused. I have a score of 6 because of my father’s alcoholism and physical , emotional and psychological abuse to my mother. He also treated and treats me like an emotional punching bag , always insulting me and making me feel less than a person. I am married gave two children and have asthma, arthritis and Colitis and lately have being suffering of panic attacks and also obese . I have always thought everything was related to the abuse I witnessed and went through, I wish I could do something for myself and for others.. Thank you for the information.
Veronique Mead, MD, MA says
An ACE score of 6 is significant. And witnessing trauma as you did has a strong impact just as being directly abused does (emotionally or in other ways). I find it helpful to have a way of totalling up a score because it can sometimes reflect the severity of what has happened in the past.
There are actually many things that you can do. If the standard medicines, tools and other medical approaches aren’t helpful or sufficient look into therapies for helping your nervous system recover from the old traumas. I have a list of a few of books and therapies here although there are many more.
If you haven’t seen it, here’s a blog post about how early life experiences influence risk for asthma and how trauma therapies can help. The post is about asthma in kids (I developed asthma in childhood myself) but doing a variety of forms of trauma therapies has helped my asthma resolve just about completely through treatment even though I did these therapies as an adult. My asthma wasn’t severe in the past 10 years but I always used to get bronchitis after a cold. I don’t anymore even as I do still get airway tightness with a cold or the flu that lasts about one night. My chronic fatigue is taking longer but has responded tremendously too. I talk about this in my story, if that’s helpful.
The trauma therapies can be most rapidly helpful with emotional symptoms such as panic attacks and I’ve found that the physical symptoms and chronic illnesses also improve. They do seem to take longer and although it’s not clear just how fully we can recover any improvement helps. You’ll also gain a context for making sense of your symptoms and that helps too.
If you’re unsure of where to start consider reading – I list a few books on the page I linked to above about therapies.
I hope that helps and I wish you all the best as you find your way and find resources and support.
Thank you , hope that you continue doing well and I will start working on myself with the information that you provided
Number 7 is flawed because it only applies to those would witness their mothers being abused, but how about those who witnessed their father, sibling, grandparent, etc, being abused? My father was abused by my step-mother, and I had to endure watching her act violently to him, both physically and verbally. She has even kicked him out of his place several times during their relationship. I have also seen her abusing my brother too. Why is it only traumatic or horrifying when applying to one example of family abuse, but not the other. Hell, even if you were to want it to only apply to parents, then why not just say “witnessing a parent being treated violently by their partner”? It is things like this that keep people from taking the abuse my father endured seriously.
Veronique Mead, MD, MA says
I’m so sorry for what you experienced. And you are absolutely right – this is one of the problems with the 10 question ACE study in that it is overly specific and misses key traumas. And there is consensus about this in the ACEs and trauma community. I think it’s just that they had to start SOMEWHERE and allow it to be simple while being imperfect.
As you say, and even more broadly – witnessing ANY kind of violence to ANYONE is likely to be traumatizing. More so when it’s a loved one you know, but even if it occurs to a stranger.
The other big miss has been that it’s an ACE not only if you lose a parent to separation or divorce, but also if a parent dies. Sort of goes without saying, but this wasn’t part of their original questionnaire. There are other issues with big traumas that weren’t assessed (being bullied, natural disasters etc), and it’s all a work in progress.
Gemma Freeman says
So interesting! I’ve been reading about ACEs for sometime now. I can’t help but wonder if both chronic illness and ACEs place off each other to exacerbate the other.
All of the women in my mother’s side of the family are ill, going back at least three generations (I do not know before that).
There are definitely cycles of trauma and abuse that have played out, which have no doubt exacerbated illness. However there are also genetic issues that seem to be at play, which have made it harder to each generation to cope, which in turn creates ACEs for the next generation.
So is it a chicken or an egg scenario?
As for my story, I suffered some emotional and psychological abuse and neglect, because my mother was bedridden with chronic illness and did not cope with life. I was yelled at a fair bit, and denied an education, and there is no doubt that this left me with significant codependent, people pleasing tendencies and severe anxiety as a young adult. However now – at age 32 – after years of therapies (of many varieties), and years of education (making up for lost time, I am now a corporate lawyer) I finally feel at peace and that I have healthy relationships. However my health still fails me- diagnosed with ME/CFS, Lyme, POTS, leaky gut, etc etc, I struggle to get through each work week (in spite of a squeaky clean diet, meditations, strict sleep hygiene, etc). I think that ACEs undoubtedly create an environment where chronic illness can develop and fester- but I also think there are likely to be some underlying genetic issues that also contribute (eg detoxification pathway issues, trouble breaking down glutamate, dopamine, etc, mitochondrial issues), because this explains why each generation of women in my family have struggled so badly to cope.
Veronique Mead, MD, MA says
Thanks so much for sharing so eloquently about your journey and the multigenerational patterns you are seeing. Yes, I would fully agree that there is a vicious cycle with trauma and illness. Chronic illness can be traumatizing in and of itself, and make it so much harder to cope and experience (or ask for or have) support and to feel well enough to mobilize and take charge etc. And trauma leads to triggers that perpetuate the cycle in our own lives as well as in next generations. Along with effects of trauma even if the next generation experiences much less of it (Rachel Yehuda’s work with Holocaust survivors and offspring).
What I find very hopeful and helpful -from research such as the Cell Danger Response, how healing bonding disruptions can cure an illness, and epigenetics, but also very deeply from 20 years experience working through my own ME/CFS, leaky gut issues etc (that improved but did not fully resolve with similar strategies like yours ie: a ultra clean diet, intermittent meditation (!), sleep hygiene etc) as as work with clients – is that even with a genetic component it is sometimes possible to change things for the better ie: those detox pathways, missing enzymes, mitochondrial dysfunction etc can be survival patterns associated with physiological survival states of fight, flight or freeze (see Naviaux’ research on ME/CFS). To what extent, I don’t yet know, but healing trauma really seems able to help change genes back on or off that have gotten programmed in certain patterns that promote symptoms – at least to some extent, some of the time, in some of us. How long and how much healing can happen is unclear and will be different for everyone, but it seems possible to make a dent in it all.
Congrats on all you’ve done and your dedication to self care and healing. I have found it is hard work and takes courage. Keep up the good work and I so wish you well and send you support to make it through your weeks with more ease! xoxo
Thank you for this. My ACE score is 7, and I’ve suffered from a variety of issues throughout my life: Juvenile Idiopathic Arthritis (autoimmune), migraines, Lyme Disease (recovered, but never quite the same afterward), chronic knee pain, chronic headache (15 years), major depressive disorder, anxiety, and for the last 10 years, disabling chronic back pain. I’ve recently had a diagnosis of Borderline PD changed to C-PTSD. I also have a crap immune system, and catch everything going around. I also seem to get everything worse and take longer to recover than other people.
Question: I assume that traumas in adulthood contribute as well? Is that true?
Veronique Mead, MD, MA says
I’m so sorry to hear about your health and ACE score. 7 is pretty high and that’s a lot you’ve been dealing with for a long time. I’m happy for you that the diagnosis was changed to Complex PTSD in that this helps recognize important sources of symptoms – I hope it’s been a helpful change for you.
Yes, the way it appears to come together in how trauma affects health is that it’s an accumulation of effects that start very early in life. It often includes a multigenerational component (parents who inflict trauma on their children through ACEs such as abusive, mental illness, addictions, jail time, domestic violence etc have usually experienced trauma themselves, which affects risk for chronic disease in their children). Then people with chronic health conditions also typically have a number of adverse experiences that are out of proportion to the degree of support and nurturing experiences in our own lives in order to affect health. This includes stressors or trauma during pregnancy and birth, a wide variety of ACEs that go beyond the 10 from the ACE study during childhood, attachment trauma (which would be inherent in the parent-child relationship in a family system where an ACE of 7 occurs) followed by trauma that occurs in adulthood or in the years before getting sick (which can happen in childhood). These later traumas are sometimes “simple” stressors and sometimes serve as the final events that trigger a long-developing change in our physiology and shift our systems into chronic diseases. Having chronic illnesses and chronic pain can itself be traumatizing so that it feels like a vicious circle.
What I find helpful is that it’s not all or none and having experienced trauma does not mean we’re screwed. Nor does having one or more chronic conditions or diseases. Healing the effects of trauma generally takes time – especially when there have been a lot of exposures- but this works similarly in that effects add up over time to begin to counterbalance the effects of trauma and to slowly help overcome at least some, and sometimes many, effects with time. Wishing you all the best!
Billie Abbott says
I live in Australia, and have only just received this big load of info. I printed out the PDF as looking at the screen is too hard for me for too long. My score was only 2, but it does not really indicate the extent of suffering as a child. My beautiful father, so kind, so caring, who loved us all (four girls, me the youngest, and our mother), fell foul of Western Medicine in the 50′, I am 74 and have had CFS/ME for 20 years. He had a football injury, very sportive, and it damaged his sinus and nose, and he later developed asthma, and could no longer work (different drugs then – was given pure, I think, adrenaline in a “puffer”, glass mouthpiece and rubber tube, which probably bought him down. He became depressed because he could not support his family, we were relatively poor, and Mum had to go out to work, not a usual for those days. He tried cooking apple pies, tending the garden. He became impotent. He got worse. He tried to take his life three time in our house, the local doctor, used him,maybe in desperation,
as a guinea pig, and gave him different drugs all the time. I used to run in the dark to the Chemist to get them, my hear beating fast. He was given Amphetamines, and they drove him up the wall. Finally, the doctor, told my mother he had senile decay and didn’t have long to live. He was now about 60.They came, they took him away, I held my sister’s and as they took him. I loved him so dearly. He never lived in our house again, and died at age 84. I was 11. We visited him in some very strange places, he was never insane, never…… the family never stopped visiting him….. my Mother finally had a nervous breakdown when I was 13, do life changed a lot. She never tried to take her life. But never really recovered to the woman who must have been. Two of my older sisters, during their adult life have attempted suicide, one tried three times…… so you see, apart from what happened after I was
18, ie, domestic violence with my first true love, I have a score of 2, and yet the loss of my father, and his subsequent incarceration, plus the illness of my mother, played a big roll in bringing me down. Just needed to tell you this,because of the scores. Sincerely Billie. I have recently lost my older sister and this has bought me down tremendously…. she was everything to me, 16 when I was born.
Veronique Mead, MD, MA says
I am so very sorry for all your tremendous losses and burdens and those of your parents doing the best they could within their lives and with our medical system that has such limitations. With your sister being 16 years old I imagine that she was like another mother / parent figure to you. You describe exactly what is one of the biggest concerns about the ACE study in that it only looks at 10 things. The way I see the ACEs is that they are like a window that informs us about the role of adversities of all kinds. In that way they help educate us so we can begin to look, recognize, acknowledge and make sense of our lives, just as you have. It gives us a tiny peek into how life experiences can affect us, and then we can do the rest by using the tools, and beginning to heal the effects of trauma, which can shift even if they happened decades in the past.
Thank you for sharing some of your story. I send you my warmest best wishes.
My ACE score is a 7. I am 50 years old and do not expect to live past 65. Explaining my increased risk of disease to doctors is difficult. They generally refuse to consider how the ACE score affects my overall health outlook. Personally, I base my health decisions on the sooner instead of the typical “of course you’ll live to be 80 if you take care of yourself.” Doctors often don’t understand why I have a fatalistic outlook on aging. I tell them that if you’re not going to live past a certain age healthy then it’s not worth living in a compromised state. That is hard for them to accept. I hope that I can explain to my children and husband when the time comes that I will not fight to stay alive in poor health. They have been a loving family and they deserve better than to be forced caretakers. I have worked hard to overcome my childhood, but it seems in the end that the die that was cast so long ago will ultimately determine how my later life will go. I hope the happy childhood that I worked to give my own children gives them more hope for a healthy future then I have.
Veronique Mead, MD, MA says
Hi Letitia, You have really worked this and gotten to understand the very sobering effects of ACEs. It also sounds as though you have done something(s) differently, given how you have raised your kids. I wonder if you have seen the journal articles on this other ACEs post that you can give to medical providers if you want to give them something they can sink their teeth into. These include the original ACE study, the autoimmune study in ACEs, a story by a woman with a high score and a 2018 ACE journal article in the Journal of Family Practice for the most recent publication in a solid journal. I wish you all the best. Thank you for writing.
How does adoption correlate here? If the chid was adopted into a very loving nurturing family at age 5 weeks, the biological mother was 13 and the biological father her older brother, is there some scoring that needs to be accounted for the trauma the biological mother carried throughout the pregnancy and birth?
Veronique Mead, MD, MA says
Hi Tricia, I would first say that it appears to be about balance between adversity and support and that being adopted into a very loving, nurturing family – and very early – would be a huge counterforce to the ABEs and ACEs this baby experienced.
I would think of the baby’s ABEs as starting with the first 4 items on the ABEs checklist (#1 maternal trauma; #2 probable lack of support given the circumstances; #3 emotional stress; and #4 physical stress very likely, including becoming pregnant at 13 in these circumstances). These ABEs would have made it harder for the mother to connect with her baby or have good feelings about being pregnant, and all this could have affected her and the baby’s experiences of birth, breastfeeding and the initial period designed for connection. Her ACEs (I would imagine there were more than 1) would have contributed to this as well.
The baby has at least two ACEs: one of losing both biological parents, and a second from the likely significant mental stress that might qualify as mental illness in the biological mother such as PTSD, depression, anxiety or other very normal reactions and symptoms in response to her circumstances.
All of this clinical / technical summary merely identifies the facts of a challenging start in life. I would be most curious about the baby and the bond with his or her adoptive parents.
Whether or not the baby had symptoms (ABE #10), I would recommend some form of healing for the adoptive parents and baby (as well as for the biological parents if this were an option). Here are two lovely examples of just how healing can happen and how much healing can happen: one is summarized in my blog post on asthma and is about an adoptive mother who felt bonded to her daughter but whose daughter’s asthma resolved with bonding therapy with Dr. Tony Madrid; the other is a book about a woman who adopted a little girl from China and then helped China change their practices and was amazed at just how much these babies and young children could heal, attach and recover. It’s called Wish You Happy Forever.
I hope that helps in this poignant situation. Please let me know if you have any other questions. Warmly, Veronique