I’ve been in a fatigue flare for the past 6 months following the death of my 90 year old aunt, which stirred up some grief along with old patterns of depression. I had a rich last visit with her and my cousins but she left a hole in my family. The old guard – the generation that has been the core that keeps our extended family in touch – is starting to hand over the baton. The events stirred up old patterns and I’ve spent most of my emotional and physical energy working through this latest layer.It’s been rewarding. I’ve been writing less but it felt good to write today’s post. I open up here about my history of having lived with both ME/CFS in the past 20 years and depression in the first 20. I also describe the 5 types of trauma I discovered in my own history and how understanding trauma has shaped how I think now. It’s been a remarkably empowering journey even if the pace of recovery and the extent to which healing is possible remain unknown. I hope something in this post is helpful to you too. And thank you so much for your enthusiasm and encouragement to keep doing this work.
I never realized that I’d experienced trauma until I trained as a trauma therapist and started discovering how adverse life experiences affect risk for chronic illness. Understanding trauma made sense not only of my experience with ME/CFS but in studies I discovered for many other chronic diseases, including type 1 diabetes, asthma, MS, rheumatoid arthritis and others. It has helped me begin to heal and changed the direction of my life in the best possible way. This is my story of how it started and how I have learned to relate to my health condition.
The Short Story
My ME/CFS (myalgic encephalitis / chronic fatigue syndrome) started 20 years ago when I was in my early 30s and I have been disabled by it. My symptoms worsened slowly over 10 years and at my lowest I got worse from activities such as sitting, standing, taking a shower, or talking. I spent most of 2009 either in bed or on a little mattress in my living room during the day. What I learned after leaving my career as a family doctor, got a Master’s degree in somatic psychology and started exploring the research was that adverse life experiences and trauma are risk factors for chronic diseases of all kinds. The science is starting to explain how it’s not psychosomatic or all in our heads but because trauma affects our nervous systems, immune systems and our genes. These effects can take years, decades or even generations to manifest as symptoms and there are certain characteristics I’ve started to see across a wide spectrum of diseases.
The insights have helped me begin to heal. I’m not yet fully recovered or back to work but now take two walks a day, can run errands or meet with a friend most days, and can also travel a little bit. I still pace myself, take naps and experience flares on occasion, but I don’t dip back down to the “death-like” state or spend days in bed anymore. I bounce back more quickly, am no longer an invalid and the possibility of full recovery does not seem like a fantasy anymore.
I share the research on this website and update posts from time to time with more studies. This perspective offers insights into potential treatment and prevention of chronic illness and mental health conditions and is starting to be recognized in some medical environments.
The Detailed Version
My Onset of Chronic Fatigue
I started having bouts of fatigue in the late 1990s when I was in my early 30s. They lasted a few days at a time and left me so tired I didn’t want to roll over in bed at night. I was skiing, bicycling and working 60-80 hours a week as a family doctor and called these episodes “fatigue attacks” because they came out of nowhere and disappeared just as quickly. I could push through and recover by spending time in bed on weekends and when I felt healthy again in between episodes, it seemed as though all was normal.
Around that time I received a letter from an aunt who had finally received a diagnosis for her own disturbing symptoms, which included fatigue. The name of her disease was “CFIDS” for Chronic Fatigue Immune Dysfunction and the photocopies she sent sounded intense, scary and complex. I still seemed really healthy apart from these occasional, weird “attacks” and I had no idea I was in the early phases of developing the same chronic illness, which is now called ME/CFS for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. Her twin sister was later diagnosed with ME/CFS as well. The cause and treatment remain unknown.
As my symptoms gradually worsened and the fatigue attacks became more frequent, I felt bewildered. I’d been physically as healthy as a horse my whole life other than asthma, which was mild. I didn’t have any obvious causes for fatigue such as low thyroid, high blood sugar levels or diabetes, or anemia. Even the depression I’d had most of life had lifted. I had not recently been sick with a significant infection. I never had symptoms of a tick borne disease.
In 1995 I had finally attained my goal of becoming a faculty member and teaching family medicine. Around the onset of my fatigue a few years later, however, I was feeling conflicted about my work hours, the short time I had with patients, and how little I could offer anyone with chronic or debilitating diseases because there simply were (are) no cures.
I figured my fatigue was stress related.
So I ate in a healthy way, saw a rolfer and did psychotherapy, slowed down and worked part time for a year, took a second year to stop working and relax more fully, and then changed careers altogether. My fatigue progressed despite these changes. It increased from intermittent periods of exhaustion between periods of normal health where I could still bike, ski, windsurf, hike and work – to a steady state of perpetual exhaustion that felt “death-like.” I eventually got to the point where I had to lay on my bed for a while after taking a shower and schedule rest periods between work hours because I was completely spent all of the time.
In 2009 I had difficulty working even 1o to 15 hours a week and applied for disability. It was stressful and scary to watch my health deteriorate despite everything I was doing. Within a week of stopping work, the years of pushing through caught up with me and I became almost completely bed-ridden for 9 months. I had trouble sitting up, standing, or walking for more than a few minutes at a time. Talking, especially on the phone, was exhausting as was taking a shower or drying my hair. I hired someone to deliver my groceries and cook for me.
The course of my disease has reversed since 2009. I take 30 minute walks twice a day, can fly to visit family on occasion, am able to run errands most days, and can take care of myself including getting groceries and cooking. I can even occasionally attend a workshop or a wedding for a few hours without noticeable payback. I still have flares but I now have a context for understanding my symptoms and flares, as well as good tools. I’m not yet back to work but the possibility seems more real now than it ever has before. I developed symptoms of food intolerances and irritable bowel syndrome (IBS) over 10 years ago that have yet to stabilize but they are worsening at a slower pace now and there are occasional periods of improvement.
While alternative health approaches have been supportive (acupuncture, homeopathy, making significant dietary changes, energy medicine, intuitive healers and more) nothing has been as helpful or made as big a difference as understanding trauma in a way I never got as an MD.
The Aha Moment and a Change of Perspective
After taking a year off from medicine I followed my sense that the body is wise and that symptoms may represent an intelligent process that has something to convey. I retrained as a somatic psychotherapist and learned how to listen to the body’s language, to help people regulate their nervous systems and to follow symptoms like a trail of bread crumbs that guide the process of healing.
The aha moment that lead me to a different way of thinking about chronic illness came from one of my first classes. We were learning how emotional symptoms that are overwhelming in some way can interfere with our natural capacities to heal. It started with an example from the director of my program, Christine Caldwell Ph.D. (1)Caldwell, C. (1996). Getting Our Bodies Back: Recovery, healing, and transformation through body-centered psychotherapy, Shambhala. She had asked a client who had a habit of wiping her hands across her face during therapy, if she could slow the movement down and be curious. Together, they had gently watched for any feelings, images or sensations that might arose when she did so and it had lead to an unexpected realization and shift.
In paying attention to the movement she had not been aware she even used, the client had remembered a moment from childhood. She had been at her mother’s funeral when her father had sharply ordered her to, “wipe those tears off your face.” She had come to therapy decades later. Her natural process of grieving, which is a way our minds and bodies recover from overwhelming events such as the loss of a parent, had been interrupted. And shutting off her grief had lead to unrecognized pain with no remembered cause. She cried and feeling the grief for the next two sessions she went from smoking 2 packs a day to 1/2 a pack. I learned that habits such as smoking, alcohol and drug abuse, overwork, overeating and other addictions are often a form of medicating ourselves from pain we have been unable to feel, resolve or escape. This kind of approach to healing can mobilize something inside of us that has gotten shut down.
When I wrote the paper for my class (2)Mead, V. (1999). Body Centered Theories of Addiction. Naropa University, Paper written in Somatic Psychology Masters Level Program, for class on “Theories of Somatic Psychology” (Christine Caldwell). Boulder, Colorado, I mused about whether similar experiences could interrupt physiological pathways to affect risk for chronic illness. Blood pressure, heart rate and blood sugar levels, for example, increase naturally with activity and return to baseline during rest and recovery. Could such cycles be interrupted? Could it happen in a similar way to the way grief had been interrupted in my teacher’s client? And if so, what other kinds of events could lead to shutting down of physiological cycles?
That’s when I started to learn about trauma.
As a doctor, understanding trauma meant treating physical wounds and broken bones that resulted from car accidents, violence, falls and other events, which medicine and surgery can so often fix. I thought of trauma as something that happened to war veterans, which was relevant to the field of mental health but not something I had been given tools to work with.
I had never considered the emotional side of trauma.
Researching the Role of Trauma in Chronic Illness
I became intensely curious as I started my explorations. I wondered whether the research literature would show trauma to be a risk factor for any chronic diseases. Were adverse life experiences more common in people who developed a chronic illness? Were there particular types of trauma that affected risk? How did one know if trauma had played a role? Were there triggers as there are in PTSD?
I started my research with type 1 diabetes. Using my skills from medical school to search the literature, I found studies that changed my path, my life, and eventually my health.
What I discovered was that scientists and physicians around the world were independently exploring pieces of the puzzle for their particular disease of interest and in their specific field of study. There were studies published by small research groups here and university teams there; individuals asking one question in the department of epidemiology in one country, and other teams asking questions from the perspectives of child development or neurophysiology in another. I discovered investigators realizing that prenatal stress increased risk for type 1 diabetes, others finding similar risk factors for asthma who stumbled on a cure by treating moms for the traumas and stresses experienced in pregnancy, and epigenetic biologists realizing that mothering behaviors affect genes during very specific and short windows of time in early life to affect how our bodies respond to stress throughout our lives and for multiple generations.
I was dumfounded.
Sometimes the results showed no increased risk from trauma. But mostly they did. And no one was putting it all together at the time.
Understanding trauma based on the literature and my training to learn how to heal its effects gave me a huge context from which to begin to synthesize and understand these differing results.
I started to see patterns. And I was captivated by the wealth of information available.
What I learned about trauma started shedding a new light on everything I had ever learned about chronic illness.
I didn’t recognize that I’d experienced trauma myself at first, but after I started to understand the nuances, it began to make sense of my own journey with chronic illness too.
This blog is where I write about what I’ve learned about the role of adverse life events, which is a term that better encompasses the kinds of experiences that affect risk for almost every chronic disease I have looked into.
Understanding Trauma In New Ways
I’ve come to a whole new way of understanding trauma in the past 15 years. Here are 7.
1. Trauma is More Common Than We Realize. At least 70% of adults and 50% of children (and more) experience at least one traumatic event. When you know that half of all adults in the U.S. have at least one chronic illness and that 1 in 5 have a mental health condition in any given year it becomes less radical to consider a relationship between trauma and chronic health conditions.
2. The Nature of Trauma Includes Ordinary and Extraordinary Events. There are big traumas – which neurologist Robert Scaer refers to as “extraordinary” events – such as abuse, war, surviving hurricanes and other natural disasters; And there are little traumas, or what Scaer refers to as the seemingly mundane, “ordinary” events of everyday life, such as being bullied, moving frequently in childhood, having an accident or undergoing surgery, being fired or harassed or flunking an exam. The loss of a parent and other overwhelming experiences, especially in childhood when we are more vulnerable, can also be traumatic. Trauma is much more commonplace in our own lives than we realize.
3. The Effects of Trauma Go Beyond Mental Health Conditions. The effects of trauma are not limited to PTSD (posttraumatic stress disorder), depression, and anxiety. They also include addictions, which are often unconscious attempts to avoid or alleviate pain or suffering. Trauma affects our capacity to form supportive, nurturing relationships as adults. And trauma also increases risk for chronic physical diseases.
4. It’s Not Psychosomatic, It’s Epigenetic. The perspective that emotional health conditions are caused by emotional experiences while physical health conditions are caused by physical problems comes from a false separation of mind and body (3)Baldwin, D. V. (2013). “Primitive mechanisms of trauma response: an evolutionary perspective on trauma-related disorders.” Neurosci Biobehav Rev 37(8): 1549-1566. Trauma affects our genes and alters the function of the nervous, and immune and other organ systems. Healing trauma can reverse some of these epigenetic changes. When a person with a history of trauma has a chronic illness it’s not psychosomatic or because of “laziness” or a personality problem, but because adverse life events affect our genes.
5. Trauma Arises From Experiences of Helplessness and “Freeze.” Trauma is an experience that interrupts our sense of flow and life energy, our sense of safety, or that shakes our sense of trust in ourselves, in our relationships or in the world we live in. Although fight and flight are hallmarks of both stress and trauma, trauma occurs from experiences in which we feel helpless, overwhelmed or have no control. Such experiences lead to the less recognized survival state of freeze.The freeze state is a brain mechanism’s last resort when fight and flight are not options. Freeze states can feel like we’ve shut down, disconnected, or watched an event as though from far away or in slow motion. These states can leave us feeling numb or hopeless, depressed or “death-like,” among other feelings and sensations. The state of freeze is what interrupts emotional and physiological cycles that are designed to help us to heal.
6. Trauma Symptoms Have an Underlying Intelligence. The freeze response, also sometimes referred to as similar to a state of hibernation or shut down, is an intelligent, protective survival mechanism designed to keep the organism alive when no other options exist. Our bodies default to this mechanism as a last resort even when it means turning off a small part of ourselves, such as repressing the emotion of grief in my teacher’s client. Research shows that it also affects physiological processes, such as blood pressure, heart rate, cortisol and blood sugar levels. I suspect the mechanisms are similar for mental and physical conditions affected by trauma. The research and my personal explorations have lead me to the perspective that symptoms are the result of this intelligent process gone awry. It’s about a tradeoff our brains make in difficult circumstances – risking a symptom is a small price to pay in exchange for survival.
7. The Kind of Chronic Condition Is Influenced by Timing of Exposures. Studies in embryology, brain development and early relationships show that organ systems are most sensitive to their environments when they develop, especially during early formation in the womb. These are known as sensitive periods or critical periods. If a woman experiences stress during her pregnancy, the timing (such as early or late; in the first, second or third trimester, for example) has an influence on whether her baby is at increased risk of being born smaller than usual. This is a risk factor for many chronic health conditions and reflects exposures to prenatal stress. Exposure during the World Trade Center attacks showed that timing also affected pregnant women and their baby’s responses to stress after birth. And timing of exposure influences risk for developing one kind of chronic illness rather than another as has been found in the Fetal Origins of Adult Disease research. I had had no idea that the kind of chronic health conditions I developed could be affected not only by my genes but also by what – and when – my mother had experienced during her pregnancy with me.
Recognizing 5 Types of Trauma in My Life
When I first learned about trauma I didn’t think I’d experienced it myself. This is a response I regularly hear from others with chronic illness as well. But what I learned through the literature, my training, with clients and especially through deep personal exploration and body based therapies was that I have indeed experienced adverse events. It’s often much more subtle than we realize – until you learn what to look for.
I have found that 5 types of trauma show up time and again in studies of increased risk for different kinds of chronic illness as well as mental health conditions. Here’s an overview of what I learned.
1. Multigenerational Trauma: Through conversations with family, geneology research, and from personal explorations such as from Hellinger work and through such books as “The Ancestor Syndrome,” and “It Didn’t Start With You,” I’ve learned about and begun to heal the effects of trauma in my ancestors’ lives. Two of my grandparents lost their mothers in childhood. One from an accidental overdose by the family doctor. The other from suicide. I’d known of the first, the second took me by surprise. Both parents of one of my grandmothers were bedridden when she was a child.
One of my grandmothers nearly died after an emergency cesarean giving birth to my father, whose life was also very likely at risk. My other grandmother had such severe nausea throughout her pregnancy that she was hospitalized. This was in the 1930s when hospitalizations must have been rare and the hospital was quite some distance away. She’d had 2 miscarriages before her pregnancy. There have been deaths of siblings and estranged fathers. And another suicide in my aunt who had CFIDs and was the granddaughter of my ancestor who had committed suicide.
These seemed like things that happen to everyone and I’d never thought about them much in relation to my symptoms. But such events can have an impact on the health of multiple generations and I’ve felt it in the sensations, emotions and shifts that have arisen in my body through my process of healing.
2. Difficult Events in Pregnancy, Birth & Infancy. I always thought my mother’s pregnancy with me had been entirely normal but gradually came to recognize that she had experienced significant stressors. My parents moved to another country when my mother was pregnant with me, leaving her entire support system behind other than my dad, who was working full time. She did not yet speak the language. My mom developed a spinal headache from her epidural after my birth and could not lift her head off the pillow, so we experienced a period of separation. Before I turned two her father, with whom she was close, died.
During a 3 year training for working with prenatal and birth trauma in adults, and after multiple long, gentle explorations using attention to sensation, imagery and impulse, I also discovered that I came into the womb as a triplet and lost two siblings very early in my mother’s pregnancy. This has been found to occur more often than first realized since the use of ultrasounds. It is referred to as the vanishing twin syndrome.
Prenatal stress, early separation even if only for a few hours or days after birth, and a mother’s loss of a loved one during this time are risk factors for asthma and other chronic diseases. A baby’s experiences in the womb also have an impact.
3. Trauma in Childhood. The Adverse Childhood Experiences (ACE) study looked at 10 types of trauma in childhood to find they greatly increase risk for chronic illnesses, including autoimmune diseases. ACEs education is beginning to be spread by the media, and to happen in schools, in mental health settings and slowly in pediatric medicine. These 10 types of trauma, however, represent only a small fraction of the kind of traumas in childhood that affect long-term health. My own ACE score is 0 (out of 10).
One of my unrecognized traumas was being hospitalized for asthma as a child. Hospitalization can be traumatizing in part because of the life-threatening nature of an illness requiring such care, and in part from the separation a child experiences. Medical treatment and procedures can also be terrifying, painful and traumatizing. Losing my beloved dog may have been another traumatic event in my childhood. These events seemed normal to me. But they are actually the “little traumas” – the “ordinary” traumas. The research shows that they are significant risk factors for long-term health conditions.
4. Trauma in the Parent-Child Relationship. This may be the most subtle and difficult to recognize type of adverse life experience of all. I love my parents and they occasionally read my blog, so I write about this topic on my website using examples from research, TV, movies and books, and other people’s stories. I’ve done a great deal of personal work to heal the effects of my experiences and it has made a huge difference in my emotional and physical health.
The descriptions in the following memoirs are far more extreme than my own but give you an idea of what is meant by attachment trauma, which is sometimes referred to as relational trauma or complex trauma. Examples of attachment trauma include:
- Childhood Disrupted (a journalist with autoimmune and other chronic illnesses)
- Through the Shadowlands (a journalist & mathematician with ME/CFS and mold sensitivities)
- Lab Girl (a research scientist with bipolar disorder)
- The Center Cannot Hold (a university professor with schizophrenia)
5. Stress or Trauma Before the Onset of Chronic Illness. Chronic diseases often start within days or months of a stressful or traumatic event. People who develop chronic conditions also often have a history of more trauma than their healthy counterparts in the years prior. The varying delay between exposure and onset of symptoms is also seen in trauma and PTSD as well as in many chronic illnesses, where it is often referred to as a “latency period.” The literature also finds that stress increase our susceptibility to infections, which are common triggers for many people who develop a chronic illnesses yet for whom treatment of the infection does not lead to recovery.
I had never considered that experiences before the onset of my symptoms could have affected me until I learned about trauma. Once I looked with an inquiring mind, the events in my own life were hard to miss.
In the 10 years before my first symptoms of ME/CFS started I was in 2 car accidents, one of which was a roll over at highway speed. I hadn’t been hurt in either one, and had dismissed them as so many of us do when we don’t sustain physical wounds.
I was assaulted during a work-study semester in college and never remembered how I’d gotten bruises on my face, even after my mother mentioned it some years later. This partial loss of memory is an example of the disconnection that comes with the freeze response and is another reason I hadn’t considered it in my history. I’d partly “forgotten” that it had happened.
In the 7 years prior to the onset of my symptoms I had been in medical training and then teaching full time, working 60-100 hours a week. I had witnessed death, assisted in difficult births and cared for patients who’d been in severe accidents or suffered the effects of loss, neglect or abuse and I often felt overwhelmed. One does not have to experience trauma directly to suffer the effects. Being a witness to trauma is a common risk factor for physical and mental health conditions as well as crises in those who are in the helping professions.
I also got depressed during my residency. I improved on prozac, which I took for about a year and a half until I completed my training.
Other Potential Risk Factors. In the few years before the onset of my first symptoms ME/CFS I also received a number of immunizations including a rubella vaccine and a series for protection against hepatitis B. I never developed an immunity to the hep B vaccine in follow up tests, which was unusual. Vaccines and toxins are sometimes triggers for the onset of chronic illnesses of all kinds, including ME/CFS. What the literature suggested as I began to put it all together, was that trauma can make us more sensitive to the effects of environmental factors such as these. Trauma can also make us more sensitive to the effects of infections, which are a common trigger for ME/CFS, type 1 diabetes and other chronic diseases. In fact, studies have found that stress and trauma before these kinds of exposures can increase our inflammatory responses and amplify the effects of exposure. Such effects are even more common in women (4)Dube, S. R., et al. (2009). “Cumulative Childhood Stress and Autoimmune Diseases in Adults.” Psychosom Med 71(2) February 1, 2009): 243-250. Abstract
Insights I Gained. When I began to “get” the big picture from my history, I saw more clearly how risk related to trauma is not about a single event -whether big or small. It’s because the effects of life experiences add up over years, decades and generations. And it seems to be about “balance.” There’s an interweaving and an interplay between the successes, support and resources we and our ancestors experience on the one hand, and the stressors and traumas we’ve had on the other. It’s a complex dance, which I think is also why it can be so challenging to identify the effects of trauma in our lives and in the research, as well as in the process of healing.
How Understanding Trauma Makes Sense of My Symptoms
When I started looking at my history from a trauma perspective a number of insights emerged. Here are a few of them.
1. Trauma Reminders can Trigger Flare-Ups. One of my first questions about whether my symptoms of fatigue might be linked to past trauma was whether flares really came out of the blue or followed some kind of reminder of a past traumatic event. Triggers are reminders of past traumas that stimulate symptoms of PTSD, such as how the sound of a helicopter or gunfire can make a war veteran break into a cold sweat, duck for cover or experience feelings of panic. Triggers often occur outside of conscious awareness and our responses are driven by the nervous system, not by will.
It probably took me more than a year of watching to I identify one of my first triggers. I had been in a flare-up with much worsened fatigue for about 10 days when I wondered, not for the first time, whether something had stimulated the sudden onset of this increase in exhaustion. I realized all of a sudden that my flare had indeed started within hours of a phone conversation with a friend who had attended a home birth. It had been a pretty stressful labor and somewhat difficult birth and could have gone terribly wrong. My friend had had successful pregnancies and deliveries of her own and was also a health care professional but had no training in obstetrics or midwifery. All had turned out better than okay. I had felt a little stressed by the conversation and then forgotten about it. Within 2 hours of this insight making the connection to this trigger, my flare had completely resolved.
I’ve learned that obstetrical events can be big triggers of my fatigue flares for me. In looking back, the moment I assign to the very first moment of my ME/CFS also happened around this trigger. I was sitting down for a moment between seeing two women in my clinic with high risk pregnancies when my head suddenly felt so heavy that I had to prop my chin on my hand. And then the moment had passed. The trigger stems from many of the challenges I saw and experienced when assisting women in childbirth, probably from my prenatal experiences, and also very likely from my multigenerational history described above. This is an example of how different traumas can link together and their effects can add up over time. It’s also an example of just how sneaky and difficult to identify triggers can be if they go back to very early and multigenerational trauma (5)Wolynn, M. (2016). It Didn’t Start With You: How Inherited Family Trauma Shapes Who We Are and How to End the Cycle. I’ve caught many other kinds of triggers in similar ways since then and there are fewer of them as a result of the healing I’ve done. Even though I recognize some of my triggers and can predict and prepare for some of them, however, others are often elusive and remain outside of my awareness.
2. Depression and Suicidal Thoughts: Symptoms of Trauma. I had feelings of depression throughout most of my childhood, teens and 20s that I never talked about. It seemed somehow “normal,” and at the very least, unfixable. I regularly had thoughts of suicide and at one point in my 20s I also had a plan in the event that my episodes of depression continued (I have since developed spiritual beliefs, followed by the empowering perspectives described here and long ago decided that shortening my life is not something I will choose).
In understanding trauma, I learned that depression is one of 3 most common effects of trauma (PTSD and anxiety are the others). Depression and other symptoms can also arise from multigenerational trauma, especially in relation to events that have not been talked about or handed down as part of the family lore, like my great grandmother’s suicide that I knew nothing about until decades later.
3. Depression as an Expression of the Freeze State. From my training and personal experiences I’ve come to see my periods of depression as an expression of the freeze state. This state happens in humans as well as mammals, birds, insects and other creatures. The freeze state is a defensive response to threats to survival that cannot otherwise be escaped such as by fight or flight. Depression can also be triggered by feelings of helplessness, which I often felt as a doctor because of the limits to my ability to help so many of my patients.
4. ME/CFS as an Expression of the Freeze State. From a similar perspective to what I learned about depression, understanding trauma has lead me to see my ME/CFS as a physical expression of a nervous system caught in a state of freeze. My sense is that my nervous system actively keeps me in relative “hibernation” through whatever means it learned through my adverse life experiences – whether through altered mitochondrial function, enzyme patterns or other physiological processes associated with states of freeze. Interestingly enough, one study in 2016 found that the metabolites from worms, who also enter states of relative freeze or hibernation during periods of threat are remarkably similar to the metabolites seen in people with ME/CFS (6)Naviaux, R. K., et al. (2016). “Metabolic features of chronic fatigue syndrome.” Proc Natl Acad Sci U S A. PDF., (7)Worms and ME/CFS in Hibernation study described in The Economist, (8)Naviaux findings about worm metabolites on ME/CFS blog Health Rising. Naviaux, the author of the study, refers to this as a “cell danger response.”
5. ME/CFS and Depression as Two Expressions of the Same Process. For the first half of my life my nervous system leaned in the direction of emotional symptoms of freeze through depression. In the later half, this pattern of freeze has manifested itself through physical illness, which I suspect is a deeper expression of the same physiological state. I see both as rooted in subtle and repeated exposures to the 5 types of trauma I described above.
6. The Positive Effects of Resources, Support and Treatment Can Add Up. Just as the effects of stress and trauma can add up to increase risk of developing symptoms such as PTSD or chronic disease, the effects of diet, slowing down, mind-body practices such as mindfulness and meditation; as well as support from family or friends, time in nature or with hobbies; and also from other treatments including trauma therapies also add up. While my initial attempts to decrease my stress levels and then change careers did not cure my ME/CFS, they may very well have slowed down the pace of worsening I may otherwise have had. And I suspect they also laid a foundation for each additional supportive treatment approach to help me change direction from a downward trend of worsening to a gradual upward direction of improvement. Like trauma, these effects also influence our genes through epigenetics and may very well be reversing the effects of prior adverse events.
7. Treatments Can Increase Symptoms or Cause Side Effects By Triggering Defense Responses. Understanding trauma has lead me to suspect that when I get worse from treatments I try, it’s because my symptoms are my body’s intelligent, albeit now misplaced, attempt to maximize my survival until the “threat” is gone. From personal work, as well as training in trauma perspectives (including in Somatic Experiencing (9)Levine, P. A. (2010). In an Unspoken Voice: How the body releases trauma and restores goodness. Berkeley, North Atlantic and Sensorimotor Psychotherapy the brain’s response is sometimes, “If you remove this
symptom defense response I will have to resort to some other symptom protective response to keep you safe.” This is one way in which trauma differs from stress. The effects of trauma heal – and symptoms along with them – when the inaccurate perception is resolved, which happens naturally with a little time and support for many and is facilitated by trauma therapies and other approaches for the rest of us.
I suspect that other chronic diseases are similarly expressions of nervous systems, immune systems and other organ systems interrupted by experiences of trauma.
Here are a few final thoughts on what I’ve learned from understanding trauma. I share more, along with research, through blog posts on this website.
Life Experiences Affect Both Physical and Mental Health. Understanding trauma is growing and what we are learning from looking at its role in chronic illness is that life experiences affect our bodies and physiologies as well as our minds and emotions. This process occurs through epigenetics, which are tiny chemicals that affect how genes act as well as how active (or inactive) they are. It also happens as a result of brain plasticity. It’s not psychosomatic, it’s because life events alter our genes and our nervous systems.
Trauma Differs from Stress. The science of trauma explained why de-stressing by slowing down and taking a year off; changing careers; finding new that fed my soul; entering into a supportive, long-term intimate relationship; and drastically changing my diet, were not enough to cure me or even prevent my chronic fatigue from getting worse. It took trauma therapy on top of all of these, combined with stopping completely and more, to change the direction of my health over a period of time. What I’ve learned is that trauma has different effects from stress. And that healing the effects of trauma may be a vital and missing piece that supports healing to the fullest extent that is possible.
Risk Factors for Chronic Conditions May be More Similar than Different. Many risk factors for mental illness and chronic illness are similar rather than different. The 5 types of risk factors I discovered in my life have all been found to increase risk for mental health conditions as well as chronic physical health conditions and chronic illness.
Prevention. Research is under way that may help with prevention of mental illness and chronic disease.One program at Columbia is currently studying how helping mothers bond and connect with their premature babies can help both moms and babies. They are finding, even in the first few years, that the premies whose mothers had more support for connecting to them have fewer developmental delays, cognitive deficits, risk for autism and other characteristics than their peers. Approaches for healing trauma, which already exist and will continue to evolve with time, may offer powerful approaches for treating chronic illness even after onset.
Healing, Recovery and Cure. The extent to which recovery can occur is not yet known and the pace of healing trauma is unique for everyone. In my own case, it’s not been a quick fix. But my fatigue is now improving instead of worsening and I have so much more capacity than in the past. My asthma stabilized over the years and is minimal now. I have one night of airway tightness with a bad cold or the flu and I no longer develop bronchitis after getting sick as I did for decades. My symptoms of IBS (irritable bowel syndrome) are starting to improve after more than a decade of worsening. I’ve been unable to tolerate probiotics, digestive enzymes, vitamins and all other medications and treatments for many years, including abdominal massage which was helpful the first time and then had an increasingly delayed effect on bowel function with each session until it no longer made any difference (a trauma pattern I mentioned in #6 of the previous section). I’ve experienced a direct correlation to improved gut function from healing attachment trauma.
For other people, the effects of healing trauma are much faster and can lead to cures (read Mark Wolynn’s book “It Didn’t Start With You,” or Antonio Madrid’s, “The Mother and Child Reunion: Repairing the Broken Bond“) and improvement (Donna Jackson Nakazawa’s “Chidhood Disrupted,” and Julie Rehymeyer’s “Through the Shadowlands“).
Understanding trauma and its effects may make all the difference for many of us living with debilitating and life limiting conditions by offering a context, helping us identify tools that appeal to us, understanding triggers and preventing flares and much more.
This perspective can change the way we think of health and the way we practice health care.
I suspect we’ll be surprised at what emerges in this exploration – in the best possible way.
How I Discovered the Research, a Series starting with Risk Factors in Early Life
Take my Health & Adverse Life Experiences Survey
Part 1 of 4 about the onset of my ME/CFS and what I tried
References [ + ]
|1.||↑||Caldwell, C. (1996). Getting Our Bodies Back: Recovery, healing, and transformation through body-centered psychotherapy, Shambhala|
|2.||↑||Mead, V. (1999). Body Centered Theories of Addiction. Naropa University, Paper written in Somatic Psychology Masters Level Program, for class on “Theories of Somatic Psychology” (Christine Caldwell). Boulder, Colorado|
|3.||↑||Baldwin, D. V. (2013). “Primitive mechanisms of trauma response: an evolutionary perspective on trauma-related disorders.” Neurosci Biobehav Rev 37(8): 1549-1566|
|4.||↑||Dube, S. R., et al. (2009). “Cumulative Childhood Stress and Autoimmune Diseases in Adults.” Psychosom Med 71(2) February 1, 2009): 243-250. Abstract|
|5.||↑||Wolynn, M. (2016). It Didn’t Start With You: How Inherited Family Trauma Shapes Who We Are and How to End the Cycle|
|6.||↑||Naviaux, R. K., et al. (2016). “Metabolic features of chronic fatigue syndrome.” Proc Natl Acad Sci U S A. PDF.|
|7.||↑||Worms and ME/CFS in Hibernation study described in The Economist|
|8.||↑||Naviaux findings about worm metabolites on ME/CFS blog Health Rising|
|9.||↑||Levine, P. A. (2010). In an Unspoken Voice: How the body releases trauma and restores goodness. Berkeley, North Atlantic|