We now have incontrovertible evidence linking adverse childhood experiences and chronic illness. If you’ve experienced any kind of trauma in childhood and have a chronic disease this post will give you insights. And if these resonate you’ll find links at the bottom to other posts suggesting how to work with your health condition(s) by addressing the effects of trauma, even if it happened decades in the past.
The Adverse Childhood Experiences (ACE) studies are being replicated and increasingly mentioned around the world. The studies have been discussed on National Public Radio (1)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., (2)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, (3)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, (4)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 (5)here’s the transcript of her talk.
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 (6)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 focus on in this blog post.
The higher our ACE scores, which I’ll introduce below, the greater our risk of developing a chronic health condition.
If you have a chronic illness or other types of symptoms that may have gone without explanation or understanding – this research can make sense of your symptoms.
And explain why it’s not your fault
Most of us with chronic illnesses have experienced some form of childhood trauma even if, as I’ll describe at the end of this page and in future posts, some of us have an ACE score of “0.”
Links between adverse childhood experiences and chronic illness offer vital new resources for working with our symptoms, triggers, flare-ups and other common experiences associated with chronic illness.
ACEs can be invisible because they look like everyday life to many people. Here’s an example from the 2014 hit movie “Boyhood.” There are spoilers as I describe the plot and use it to highlight some of the characteristics of ACEs.
Table of Contents
- 1 An example of ACEs in The Movie “Boyhood”
- 2 What are Adverse Childhood Experiences?
- 3 What’s Your ACE Score?
- 4 Mason Has an ACE Score of 6
- 5 What Your ACE Score Means
- 6 Adverse Childhood Experiences and Chronic Illness
- 7 Risk for Autoimmune Disease Increases with ACE Scores of 2
- 8 Recognizing Symptoms of Trauma in Chronic Illness
- 9 ACEs Affect Risk Through Our Genes Not Psychology
- 10 How to Heal from Adverse Childhood Experiences and Chronic Illness
- 11 Trauma-informed Treatment
- 12 What if my ACE Score is “0”?
- 13 Learn More
- 14 What’s Your Story?
An example of ACEs in The Movie “Boyhood”
The Oscar-nominated movie Boyhood (7)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 (8)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 outburts 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 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.
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 (9)loss of a parent for any reason, including divorce, 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, 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.
Based on what we are learning about the links between adverse childhood experiences and chronic illness and studies on the long-term effects of childhood trauma, I see things differently. Mason’s life is common in our culture, but that does not actually make it “normal.” Nor does it make it “okay.”
Trauma has significant impacts on all of us as well as on future generations, but it does not have to be that way. The ACE studies show us that Mason is actually at high risk of having many difficulties in his adult life, including an increased risk of developing a chronic illness as well as of dying at a much younger age than his peers who have lower scores. We are developing powerful tools for addressing and even preventing many kinds of trauma (for more, see a 2016 trio of articles in the NYT about the inexpensive implementation of “trauma-informed” practices in a few small communities and the tremendous impact early intervention has had on community life, levels of violence, teen pregnancy, suicide rates and school attendance). Such approaches should 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 that 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. Here’s the research.
What are Adverse Childhood Experiences?
The Adverse Childhood Experiences (ACE) research refers to a series of over 60 studies conducted in the past 25 years with results that have been reproduced in 32 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 (10)Stevens, J.E., Part One, (11)Stevens, J.E., Part Two, (12)Stevens, J.E., Part Three, (13)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) with ongoing findings with existing patients (over 400,000 of them) (14)as mentioned in the video clip above; despite the study being both retrospective (getting information using surveys of participants’ childhood experiences) and prospective (following the first group of 17,000 participants for 15 years), the results have largely been met by the medical community with silence (15)Huff Post, Part Two.
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% drop out 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 and was completely surprised by the answer given by the woman he was interviewing (16)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 substance abuse and other addictions to depression, anxiety and attempted suicide, to diabetes, stroke, cancer, being overweight, heart disease and chronic lung disease. Here are the childhood events that the ACE studies have been measuring through the use of the ACE score (17)see more information, charts, and graphics on the ACEStooHigh blog.
What’s Your ACE Score?
Dr. Felitti collaborated with medical epidemiologist Dr. Robert Anda from the Centers for Disease Control in putting together the ACE study (18)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 has since added 3 more), drawing from areas for which national programs were being created in the 1990s (19)Huff Post Part Three. Each question receiving a yes gets 1 point, even if there have been more than one exposure or many years of exposures, for a total of up to 10 points. All the questions refer to events that occurred before the age of 18. You can listen to Dr. Felitti’s description of the questions in this 10 minute video below, or click on the “+” sign below.
Determine your ACE Score: 10 Questions about Adverse Childhood Experiences
- Note that these questions are what were studied in the original research; they do not include all types of trauma that affect risk for health problems later in life.
All questions are prefaced by “Before your 18th birthday…” and are summarized in more detail in a youtube video by Dr. Vincent Felitti from February 2014.
1. Psychological Abuse: Did a parent or other adult in the household often or very often…swear at you, insult you, put you down, or humiliate you? or act in a way that made you afraid that you might be physically hurt?
2. Physical Abuse: Did a parent or other adult in the household often or very often…push, grab, slap, or throw something at you? or ever hit you so hard that you had marks or were injured?
3. Sexual Abuse: Did an adult or person at least five years older than you ever…touch or fondle you or have you touch their body in a sexual way? or attempt or actually have oral, anal, or vaginal intercourse with you?
4. Emotional Neglect: Did you often or very often feel that…no one in your family loved you or thought you were important or special? or your family didn’t look out for each other, feel close to each other, or support each other?
5. Physical Neglect: Did you often or very often feel that…you didn’t have enough to eat, had to wear dirty clothes, and had no one to protect you? or your parents were too drunk or high to take care of you or take you to the doctor if you needed it?
6. Losing a Parent: Were your parents ever separated or divorced during your first 18 years? or was there a loss of a parent for any reason?
7. Domestic Violence: was your mother or stepmother: often or very often pushed, grabbed, slapped, or had something thrown at her? or sometimes, often, or very often kicked, bitten, hit with a fist, or hit with something hard? or ever repeatedly hit over at least a few times or threatened with a gun or knife?
8. Substance Abuse: Did you live with anyone who was a problem drinker or alcoholic, or who used street drugs?
9. Mental Illness: Was a household member depressed or mentally ill, or did a household member attempt suicide? Or was someone in a hospital for mental illness?
10. Incarceration: Did a household member go to prison?
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 they count as only 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 an Iraqi war veteran)
As I present some of the findings from the ACE studies below, Mason’s score will put things into some perspective.
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” (20)Huff Post, Part Two.
What they saw was that experiences like Mason’s are staggeringly common (21)Felitti 1998: Full Text.
- Half of the adults in the study experienced one or more ACEs.
- 1 person in 4 grew up in a household with a substance abuser
- 1 in 10 grew up with domestic violence, 2 in 10 were sexually abused and 3 in 10 were physically abused.
- 1 person 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 study participants are a lot like Mason. They were 80% white (including Latino), 10% black, and 10% Asian. They included the middle class and the college educated who have good jobs and good health insurance.
The percentage of individuals who have experienced adverse childhood experiences like Mason’s is shocking.
So is the fact that these are risk factors for the most important chronic health problems seen in adults in the United States.
Adverse Childhood Experiences and Chronic Illness
Risk for chronic illness is affected by our ACE Scores
The ACE studies have found increasing risk between the number of adverse childhood experiences and chronic illness. In other words, the higher your ACE scores the greater the likelihood you have of it influencing your mental and physical health later in life. 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.
CDC statistics from 2012 state that 7 out of the top 10 causes of death in the US are caused by chronic diseases. Half of the adults in the US have a chronic illness (22)CDC. 1 in 4 people have two or more chronic health conditions. Nearly 1 child in 10 is limited by a chronic disease (23)National Health Council. Felitti and colleagues suggest that childhood trauma is a critical and prominent factor affecting risk for chronic diseases of all kinds.
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 Autoimmune Disease Increases with ACE Scores of 2
Risk for the 80 or more types of autoimmune diseases increase 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, many others goes up by 20% (24)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.
While I’ve seen no mention of chronic fatigue and fibromyalgia specifically in an ACE study yet, other researchers have found higher rates of childhood physical, sexual and emotional abuse in this population (25)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 (26)“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.” This article has an unfortunate title linking 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.” Endocrinology 152(12): 4496-4503.
ACE scores link to 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 found in both the effects of trauma and in chronic illnesses, see my post that integrates the disparate research into one integrated perspective in The Chronic Illness Model.
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.
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.
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. These symptoms reflect unresolved traumas and serve as coping mechanisms (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. 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.. This is separate research that further supports the finding in the ACE studies that trauma in one generation begets trauma in the next.
ACEs Affect Risk Through Our Genes Not Psychology
While 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 (37)see more in Trauma is like a Dandelion. According to Peter Levine and others in the field of trauma therapy (38)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.
How to Heal from Adverse Childhood Experiences and Chronic Illness
Dr. Robert Anda 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 (39)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, (40)Robert Wood Johnson Foundation, (41)more on wiki and much more is needed (42)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: (43)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 (44)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 (45)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.
Epigenetics. People continue to wonder whether genetics are the primary causes of chronic illnesses rather than environmental events, but each of these factors is believed to contribute about 50% of the risk. The results from the ACE studies support the critical role of childhood trauma in affecting risk for chronic disease. They also imply that treating trauma, even in adults, and even decades following exposures, may be able to reduce, alleviate or perhaps even cure many of the leading causes of suffering in our society.
Researcher Rachel Yehuda has found that survivors of traumatic events who have PTSD have epigenetic changes (46)Yehuda, R., et al., Epigenetic Biomarkers as Predictors and Correlates of Symptom Improvement Following Psychotherapy in Combat Veterans with PTSD. Front Psychiatry, 2013. 4: p. 118; see the full text. This further supports our growing understanding that life experiences play a tremendously and medically under-acknowledged role in the way genes regulate our physiologies. And that these changes may be treatable.
Epigenetic biomarkers, seen in combat veterans, have been found to resolve after successful treatment for PTSD with trauma therapy (47)Yehuda, 2013; see the full text. This is another offering of hope for survivors of ACEs who have chronic illnesses and other symptoms because recovery from some, and maybe even many, of the effects of childhood trauma is possible. There’s more information about multigenerational trauma, epigenetics, and Yehuda and others’ research in this article about how Felitti and colleagues also discuss prevention strategies and challenges in their articles (48)Felitti, 1998 and presentations (49)Dr Felitti’s presentation in Utah and Dr. Anda’s presentation in Alaska.
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 (50)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 (51)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 (52)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 found 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 on a reservation with few resources and being forced to attend boarding schools that negate your culture and beliefs; living amidst inner city violence, and much more (53)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. These types of events should be counted, perhaps as an additional point for each category or at the very least as a single point on our ACE scores. You’ll also find hundreds of people sharing their stories and relief on discovering the science linking adverse childhood experiences and chronic illness in Donna Jackson Nakazawa’s recent blog post on ACEs and chronic illness.
My own ACE score is zero.
If I add traumatic events from above, such as my hospitalization, my ACE score could rise to 1. But that is just one simple and overt event. There is another question that is also critical in assessing the contributions of personal adverse experiences and chronic illness, and it involves 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 anything traumatic.
I introduce this topic in a post called “Chronic Illness and Invisible ACEs. When your ACE score is Zero.“
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
What’s Your Story?
Are there links for you between adverse childhood experiences and chronic illness?
Does this research make any 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 differences 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.
References [ + ]
|1.||↑||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.|
|2.||↑||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|
|3.||↑||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|
|4.||↑||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.|
|5.||↑||here’s the transcript of her talk|
|6.||↑||learn more on the ACE website; see findings grouped by category on the CDC’s website|
|7.||↑||more on wiki|
|8.||↑||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|
|9.||↑||loss of a parent for any reason, including divorce, 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|
|10.||↑||Stevens, J.E., Part One|
|11.||↑||Stevens, J.E., Part Two|
|12.||↑||Stevens, J.E., Part Three|
|13.||↑||The author’s blog is a source for up to date information about ACEs, called ACEStooHigh|
|14.||↑||as mentioned in the video clip above|
|15, 20.||↑||Huff Post, Part Two|
|16.||↑||Huff Post series, Part One|
|17.||↑||see more information, charts, and graphics on the ACEStooHigh blog|
|18.||↑||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|
|19.||↑||Huff Post Part Three|
|21.||↑||Felitti 1998: Full Text|
|23.||↑||National Health Council|
|24.||↑||Dube, S.R., et al., Cumulative Childhood Stress and Autoimmune Diseases in Adults. Psychosom Med, 2009, 71(2) p. 248; Full Text|
|25.||↑||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|
|26.||↑||“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.” This article has an unfortunate title linking 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.” Endocrinology 152(12): 4496-4503.|
|27, 43.||↑||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, 48.||↑||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 Trauma is like a Dandelion|
|38.||↑||see more in the post on Trauma therapy with a Dog Named Kane|
|39.||↑||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|
|40.||↑||Robert Wood Johnson Foundation|
|41.||↑||more on wiki|
|42.||↑||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|
|44.||↑||see more about trauma therapies in 10 Under-utilized Tools for Treating Chronic Illness|
|45.||↑||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|
|46.||↑||Yehuda, R., et al., Epigenetic Biomarkers as Predictors and Correlates of Symptom Improvement Following Psychotherapy in Combat Veterans with PTSD. Front Psychiatry, 2013. 4: p. 118; see the full text|
|47.||↑||Yehuda, 2013; see the full text|
|49.||↑||Dr Felitti’s presentation in Utah and Dr. Anda’s presentation in Alaska|
|50.||↑||Dr. Anda introduces this in his presentation at about the 25 minute mark|
|51.||↑||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|
|52.||↑||presentation at Alaskan conference|
|53.||↑||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|