The chronic illness books listed here support recovery through stories and by highlighting the new science. The research is discovering that risk for diseases of all kinds is affected by adverse life experiences and other sources of threat and overwhelm. Because these change our body’s natural ability to regulate in ways that support health. These experience interact with our genes and our nervous systems, immune systems and beyond. It’s not psychological.
You’ll
- read stories from others with chronic illnesses who understand links to trauma
- learn how symptoms are influenced by nervous system perceptions of threat
- get tips and links to find a therapist
- learn why pacing is important
- find resources for understanding trauma
- learn of tools for working on your own
- get inspiration from others who share wisdom from having walked this path
- access my free downloadable ebooks
These chronic illness books offer insights for healing the effects of trauma and other types of environmental stressors that elicit nervous system perceptions of threat and the cell danger response. These are physiological, cellular, and biological mechanisms that increase risk for chronic symptoms and are not psychological (emotional symptoms are only one effect of adversity and are not the cause of physical symptoms).
I refer to chronic illness books and resources specifically because chronic disease is the focus of my blog. The books and approaches mentioned here are also helpful for mental health conditions and other symptoms including PTSD, depression, anxiety and other effects of trauma.
None of this is to say that illness is “all in your head.”
It’s because the science is discovering how trauma influences and dysregulates our nervous systems and health.
How these patterns can get stuck and persist to cause symptoms. And how we can begin the repair.
You can find a list of trauma-informed therapies that support healing in this companion post. The chronic illness books and therapies list below includes these therapies.
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The forms will appear momentarily. The Post PDF is for this blog post on books I recommend and a companion post on therapies for different categories of adversity. The List is a short summary of all resources with links.
Addressing Perceptions of Threat
When you have a chronic illness it is helpful to consider the perspective that symptoms are often a body’s particular way of responding to the perception of threat.
These symptoms often reflect nervous system patterns of dysregulation and states of fight, flight and/or freeze.
The perception of threat is rarely conscious.
It can be so subtle that WE don’t recognize it, even though our bodies do. And it can be as simple as not feeling safe.
This perception of threat can come from
- childhood trauma
- work stress
- strain in relationships, with finances, as a caregiver
- after the loss of a parent or other loved one
- surgery and general anesthesia
- an accident
- a history of a complicated birth
- trauma in your parents’, grandparents’ or other ancestors’ lives
- an infection, which is a common trigger for the onset of all kinds of chronic illnesses, can be an indication of immune system dysregulation, influenced by states of fight, flight, and freeze in the nervous system and adding another layer if antibiotics are used (which influence gut health, the microbiome and more)
- medical trauma, such as being dismissed, judged, blamed, disbelieved by your doctor or other care professionals
The perception of threat may link to something you experienced in the past but no longer exists in the present.
Rather than a particular thing or event that can be pinpointed specifically, however, therapies for chronic illness can focus or start with a subtle lack of safety or trust; or by identifying and working with a feeling, such as one that something bad is going to happen even when everything seems to be going your way.
You can also work with chronic illness from such a perspective by exploring current symptoms, triggers, sensitivities to work stress or to foods or odors or places, for example. Such symptoms serve as a guide.
Having a sense of not feeling secure or of impending doom and other difficult feelings is not a sign that your illness is psychosomatic.
It is not an indication that you are crazy, mentally ill or that your chronic illness represents a personality flaw. Such symptoms can be triggered by getting a diagnosis of a chronic illness, the unpredictability or severity of your symptoms, as well as by other difficult life events.
These are an indication that your nervous system may be primed to be more sensitive to stress and to other triggers.
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Go Slowly, Gently and Include Your Body
There are many approaches for healing and working with bodily responses to the perception of threat. The therapies for chronic illness I list here work specifically with nervous system survival responses while being slow, gentle and emphasizing the importance of going at your own pace.
For those of you who have experienced trauma, it’s not about reliving past events but about finding the health and wisdom that already exists in your body and nervous system.
For those of you with no known history of trauma these approaches offer a way of unwinding and softening our intelligent survival responses that have become overactive.
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Chronic Illness Books Introducing Trauma
There are new books coming out every day as the science grows and our understanding of the chronic illness and trauma connection becomes more and more accepted. These are my favorites.
1. The Deepest Well: Healing the Long-Term Effects of Childhood Adversity (2018) by pediatrician Nadine Burke Harris, MD. If you want to understand if and how trauma has affected your health and have limited time to read it all, this is the book to start with. It explains how she first learned about the science of adverse childhood experiences (ACEs). This awesome book is my favorite introduction to trauma and its effects on the nervous and immune system and much more. Describes the ACE questionnaire looking at 10 types of trauma and how they affect risk for chronic illness, mental health conditions, difficulty in relationships later in life and much more. She includes her story as a doctor and from her own life, how she incorporates ACE screening into her practice, and the ACEs science influences how she evaluates, treats and helps her patients.
2 & 3. Waking the Tiger: Healing Trauma and In an Unspoken Voice: How the Body Releases Trauma and Restores Goodness, by Peter Levine, Ph.D., founder and creator of the somatically based approach Somatic Experiencing (SE). I find these two books to be among the best, most helpful, readable and approachable books on trauma. Both give examples and the second includes Peter’s own experience of being hit by a car and how he made sense of and worked directly with the event in his own life to prevent the development of symptoms (1)Levine, P. (1997). Waking the Tiger: Healing Trauma. Berkeley, North Atlantic Books(2)Levine, P. A. (2010). In an Unspoken Voice: How the body releases trauma and restores goodness. Berkeley, North Atlantic.
4. Even if it Costs me My Life: Systemic Constellations and Serious Illness, by Stephan Hausner. This comprehensive, powerful, easy-to-understand book can help give you insights about origins of your illness, how it’s not your fault, and how disease can represent something that has been excluded in a family system rather than being an individual issue. This book includes stories and case studies to demonstrate just how strong the effects of trauma in our parents and grandparents’ lives can be in influencing risk for chronic illness. It also demonstrates how much healing can happen and how this can also sometimes happen very quickly. Includes stories of people with lupus, fibromyalgia, CFS, cancer, MS, allergies, Crohn’s, scoliosis, asthma and more.
5. The Trauma Spectrum: Hidden Wounds and Human Resiliency, by Robert Scaer, MD a neurologist who learn about trauma from Peter Levine and who discovered how much it helped make sense of mysterious illnesses, chronic pain and many chronic diseases. For anyone wanting to better understand the physiology and science of trauma and the changes that occur in the brain.
6. When the Body Says No: Understanding the Stress-Disease Connection, by family physician and speaker Dr. Gabor Mate, who grew up in the shadow of the Holocaust. A friend gave me this book because it summarizes so many of the different types of trauma that affect risk for chronic illness and does so through stories. Includes the science. It is written with a voice of compassion with an eye for the truth that is sometimes painful to witness while also deeply validating for the soul. Includes stories of people with RA, MS and other chronic illnesses as well as discussion on adversity in babyhood and childhood.
Chronic Illness Books for Working on Your Own
There are many activities that support nervous system regulation that you can do on your own or inexpensively with CDs, videos or online. These are helpful for working with chronic illness as well as mental health conditions and do not imply your symptoms are “all in your head.” You can learn more about the nervous system in chapter 4 of my Essential Guide to Chronic Illness, Trauma and the Nervous System.
1. Healing Trauma: Restoring the Wisdom of Your Body, by Peter Levine Ph.D. It includes an introduction to trauma and a series of gentle exercises to start on your own or with a friend or partner. It comes in paperback and kindle formats as well in audio download formats with a CD and can be taken as an online course. You can also find it at Sounds True.
2. The Complex PTSD Workbook: A Mind-Body Approach to Regaining Emotional Control and Becoming Whole. This book was written by colleague and fellow somatic and trauma therapist Arielle Schwartz, Ph.D. Complex trauma refers to wounds that arise in our first attachment relationships with our parents. I have not yet read this workbook but have heard wonderful things about it.
3. It Didn’t Start with You: How Inherited Family Trauma Shapes Who We Are and How to End the Cycle, by Mark Wolynn (3)Wolynn, M. (2016). It Didn’t Start With You: How Inherited Family Trauma Shapes Who We Are and How to End the Cycle. Mark starts by sharing a story of how he healed an autoimmune eye disease when he worked through some multigenerational trauma and reconnected with his parents. It provides guidance and very specific steps for working with symptoms of all kinds even if you have no sense of trauma in your ancestors’ lives. Also presents the science of adverse multigenerational experiences (AMEs) and stories of healing.
4. Feeding Your Demons: Ancient Wisdom for Resolving Inner Conflict is an approach I found to be deep, gentle and surprising for working on my own, written by Buddhist leader Tsultrim Allione. It includes a clear set of steps and is described as, “That which is called a demon is not some great black thing that petrifies whoever sees it. A demon is anything that obstructs the achievement of freedom…. Fears, obsessions, addictions are all parts of ourselves that have become “demonic” by being split off, disowned, and battled against. When you try to flee from your demons, they pursue you. By struggling with them, you become weaker and may even succumb to them completely … We need to recognize the futility of this struggle and begin to accept and even love those parts of ourselves.” You can learn more in this article by the author.
5. My Grandmother’s Hands: Racialized Trauma and the Pathway to Mending Our Hearts and Bodies, by
6. How to Be Sick: A Buddhist Inspired Guide for the Chronically Ill and Their Caregivers, by Toni Bernhard (4)Bernhard, T. (2010). How to be Sick: a Buddhist inspired guide for the chronically ill and their caregivers. Boston, Wisdom Publicationswho has chronic fatigue (ME/CFS). This is a compassionate, soothing, gentle primer on how to cultivate self-love and self-care using mindfulness and other Buddhist principles of being in the present moment. It gives you tools and personal examples to help you feel more accepting and calm, even as you continue to search for ways to heal.
7. CFS Unravelled (Rewiring the Nervous System), by Dan Neuffer (5)Neuffer, D. (2013). CFS Unravelled: One man’s search for the Cause of Fibromyalgia and Chronic Fatigue Syndrome and the Discovery Essential for You To Recover. Amazon, Amazon Digital Services LLC 338. While this book is about one particular illness called chronic fatigue (also known as ME/CFS for myalgic enscephalitis/ chronic fatigue syndrome), research suggests similar patterns drive other chronic diseases, including type 1 diabetes, multiple sclerosis, rheumatoid arthritis / disease and many others. Dan Neuffer recovered from ME/CFS by supporting nervous system patterns of regulation through many means, including diet, pacing and going slowly, and mind body practices. These are sometimes sufficient to recover from some chronic diseases.
It has not been enough for me, but it’s a valid, inexpensive, empowering set of places to start. Here’s an intro to Dan’s work and an example video of one person’s story of recovery. I’ve only read his book (first edition) and have not participated in his online program given that I have my own comprehensive and similar set of tools.
I share videos and online courses for working on your own in the blog post on Therapies.
Surgery Preparation
Guide to Preparing for Surgery. Surgery can be stressful, scary, and potentially threatening or traumatic. This can be due to having our bodies immobilized with anesthesia and cut into, the unfamiliar surroundings and people, the unknowns regarding recovery and outcomes, the health conditions that require surgery, and more. Anthony “Twig” Wheeler, a trauma therapist and Somatic Experiencing Practitioner, has created an easy-to-read free downloadable write-up and podcast on how best to prepare as well as how to support your body during and after surgery.
Guide to give your doctor before surgery if you have chronic fatigue syndrome or fibromyalgia. Dr. Charles Lapp, director emeritus of the Hunter-Hopkins Center in Charlotte, a clinic specializing in the treatment of CFS and FM has created a summary of common problems that can be addressed for this group of people when undergoing surgery. It is meant to be shared with a person’s surgeon and anesthesiologist.
Chronic Illness Books for Inspiration
1. Childhood Disrupted : How Your Biography Becomes Your Biology, and How You Can Heal by science journalist Donna Jackson Nakazawa’s describes the adverse childhood experiences (ACEs) studies and how learning about ACEs helped her begin to heal (6)Nakazawa, D. J. (2015). Childhood Disrupted: How Your Biography Becomes Your Biology, and How You Can Heal. New York City, Atria Books. She has a number of serious autoimmune diseases that run in the family. Donna shares links between stress, toxic stress and chronic illness, which are slightly different from the trauma perspective, but many similarities exist. Her approaches support nervous system patterns of regulation and include yoga, meditation and mindfulness practice as well as Somatic Experiencing (Peter Levine’s approach, briefly described late in the book).
2. The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity by Norman Doidge, MD (7)Doidge, N. (2015). The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity Viking Adult offers a series of surprising and inspiring stories of people who have improved, stabilized and / or fully recovered from chronic illnesses and physical symptoms. These include
- blindness caused by an autoimmune disease
- MS
- Parkinson’s
- chronic pain
- traumatic brain injuries and other chronic health conditions.
Most of the approaches described are not specifically oriented to healing from trauma but address nervous system changes by working with the ability of our brains and neurons to recover, even years or decades after an event. This is known as brain plasticity. Some of these changes appear to be linked to patterns of survival and Doidge has compiled a fascinating theory in Chapter 3 that is consistent with what I’ve learned about trauma and how our bodies learn to perceive threat.
3. The Lady’s Handbook for Her Mysterious Illness: A Memoir by Sarah Ramey (8)Ramey, S. (2020). The Ladies Handbook for Her Mysterious Illness: A Memoir. NYC, Doubleday. Not quite a workbook, this offers the big picture. Sarah’s book goes beyond her story with chronic fatigue syndrome (ME/CFS), autoimmune and many other illnesses including CRPS (chronic regional pain syndrome) to include a comprehensive way of making sense of symptoms, similar to what I write about on this blog. Told with humor, wit and compassion and from a perspective she put together over the course of her 10 year+ journey. Most everyone with any chronic illness will relate to her symptoms, journey, being disbelieved by doctors. Includes why there is no one fix, no quick fix, and how to approach healing. Includes the overlooked and pervasive role of sexism for the feminine. For men and women. Can be triggering to read something so potentially similar to your own journey. Likely to also be profoundly validating. Go gently and take your time.
4. Kitchen Table Wisdom: Stories that Heal, by Dr. Rachel Naomi Remen is one of my all-time favorite books (9)Remen, R. N. (1996). Kitchen Table Wisdom: Stories that Heal. New York, Riverhead Books. Rachel was diagnosed with severe inflammatory bowel disease (IBD) in her teens and is a story-teller extraordinaire who communicates and educates in the most connecting and moving ways. Each chapter tells a story and offers a pearl of wisdom from experiences she’s had in her own life or that she’s witnessed with patients as a pediatrician and with clients (half of whom are doctors dealing with burnout and a loss of meaning) when she became a counselor. Her stories offer insights into the subtle and profound effects of how life experiences can influence our health and help us on our journeys of healing.
5. Poetry and Stories About Our Human Journeys. David Whyte talks about self-compassion in this DVD (10)Whyte, D. (1992). The Poetry of Self Compassion (DVD), Many Rivers Press and about the road we travel as humans that includes suffering in so many different guises. His description of The Three Marriages – self, relationship and work – applies to living with chronic illness and how we find our way through acceptance, courage, internal explorations and following that which calls to us most deeply (11)Whyte, D. “The Three Marriages: Reimagining Work, Self and Relationship.
6. The Mother and Child Reunion. Psychologist Tony Madrid’s book with stories of curing asthma by healing bonding disruptions. Includes examples of what it looks like when prenatal events, difficult birth and other ABEs interfere with bonding and the heart warming stories of recovery from symptoms of asthma. He’s been doing this for more than 30 years. It’s about compassion for the unrecognized traumas mothers experience and how healing mothers helps their kids recover and reestablishes the links of love.
7. What You See is Not How I Feel is a short, charming illustrated book about what it feels like to have a debilitating invisible chronic illness and how it is perceived from the outside, when you look normal. By Darda Anderson in Canada, who has chronic fatigue (ME/CFS). It’s a gentle, connecting way to remember that you are not alone and to help others understand a little bit better too.
Free Downloadable Ebooks
I’ve written a series of free ebooks to help make sense of The Chronic Illness & Trauma Connection. You can find these and others on my ebooks download page.
1. Book 1 provides an Overview of the links and research describing 6 different types of trauma mentioned in this post and how they increase risk for chronic illness. It includes stories of healing and recovery in
- asthma
- inflammatory bowel disease
- chronic fatigue (ME/CFS)
- autoimmune disease
- MS
- and others.
It also introduces the different types of trauma that affect risk for chronic illness and other health conditions and describes the differences between stress and trauma.
2. Book 2 explains symptoms commonly seen in both trauma and chronic illness and how effects of trauma influence symptoms such as
- behaviors
- emotions
- physical health
- physiology
- thinking and cognition
Recognizing effects of trauma can make it easier to recognize whether and how adverse events may be affecting you.
3. Book 3 introduces research explaining how the effects of trauma in chronic illness are not psychological.
For more tools for healing the effects of trauma in chronic illness see this post on tools. You can also find a therapist in the post with links to different trauma therapies. Or download the free ebook below covering Books and Therapies for Healing Trauma in Chronic Illness, which includes segments not included in either post.
References
Hi, Veronique!
My accumulated life traumas finally caught up with me at age 69! I have been an over achiever who has genetic, childhood and professional trauma. The list is long starting with depression in grandmother and father, abusive alcoholic father, incubation at birth for being born underweight, etc. I now have ME/CFS and am ready to what I can to heal.
I take Noritriptyline and LDN plus supplements..I work with a ND at the Mederi Centre in Ashland, Oregon. My diet is clean and I pace pretty well. I am in good health in general. What do you think of Mestinon for balancing the ANS?
I am so happy to have found you!
Louis in Atlanta, GA.
Hi Louis,
Welcome! You lasted a long time before your traumas caught up with you indeed! Did you experience some supportive people or experiences in your life to help you “get that far”? I’ve had difficulty tolerating meds / supplements / vitamins for a long time (part of my body’s survival response, I believe) and don’t practice medicine anymore so I don’t have any good info to offer in that vein. If meds are helpful for you, then that can be a wonderful thing and it seems to be something each individual person has to try out for themselves. My personal orientation has been to heal my nervous system defense responses as directly as possible and so I’ve gravitated towards the body based trauma therapies, if that’s of any help.And there are many additional types of additional approaches for working with the ANS.I suspect some of us react to meds because it threatens our body’s survival strategies and I’ll be writing about all this in the 3rd post of the ME/CFS series. I hope that’s helpful!
Great list. Really appreciate how much information you share. Anytime I have your site on speed-dial. in case I need to check something thanks
Thanks so much Cheryl!
I’m hoping that with your help, I can finally have some mental rest. When officials here blame a victim for all that goes wrong is what I’ve been dealing with. From the DA, to corrupt police, to the Victims Center, to my near that was swept under the carpet. There’s a lot more to the story, that I’ve been accused if that never happened, that when proof was shown, still I was unheard.
Wilma,
Being unheard and inappropriately accused is very, very difficult and a big problem in this country and elsewhere. I hope these resources are helpful.
Thanks, a few books I haven’t heard off so i’ll have a look at them. A good book about developmental trauma which was especially interesting to me due to being adopted and having to do alot of work on abandonment is Nurturing Resilience by Kathy Kain.
I’ve definately learnt the connection of trauma and illness in the last 2 1/2 years and it’s been an important part of my recovery from lyme.
Hi Ben,
Thank you for adding Kathy Kain’s book – I have heard good things about it and was introduced to her and her touch-based work as part of my training in Somatic Experiencing (I really liked her and this approach and for those who don’t know her she has been part of the core SE faculty). Having you list her book here in the comments will be helpful for others too. I appreciate that you’ve added how it helped you with Lyme and the issues of adoption and abandonment, which are important sources of adversity.
To expand, the book is more the theory of it and how development trauma has a negative effect which I found beneficial along with somatic trauma work. Didn’t realize you were certified in somatic experiencing. Have you come across Irene Lyon? I did 2 of her courses (not for any kind of certification, just myself) and found them awesome, she combines somatic experiencing, Kathy Kain’s stuff and feldenkrais in her courses.
Hi Ben – I think the developmental piece is one of the most invisible and pervasive for experiencing chronic illness and other effects of adversity. Yes to Irene Lyon! Her course is one of the ones I link to because of the many good things I’ve heard even though I don’t know her personally. Her free youtube videos are often a huge help with deep insights for people too :-)
I was physically, sexually and emotionally abused as a child. My mother knew but allowed it to happen. I blocked it for many years. Memories started coming back in my 40’s. I have been a professional patient my entire life and never understood why I have always been so sick. I’ve had TMJ, endometriosis, IBS, chronic migraines, stomach cancer in my 40’s, lost hearing in right ear, tinnitus, herniated/ruptured discs, pelvic pain, painful bladder syndrome, chronic fatigue, CPTSD, depression, anxiety and more. I feel stuck. My small town only offers cognitive behavioral therapy. My husband has driven me to other places for different treatments but nothing really helps. I’ve been in therapy 6 1/2 years. I was always a sickly child. My mother never liked me. She said she tried to love me but I was just so much trouble. I’ve read a lot of books about childhood trauma but it didn’t make me feel better. I’m currently facing back surgery on L4 L5. It’s herniated and I have nerve pain down my right leg. It was excruciating for three weeks. Surgery delayed because I had two abnormal EKGs. Finally got cleared by cardiologist. I’m afraid they will make me worse with surgery. My life revolves around my health conditions. Can you recommend a good place/book to start?
Hi Kristie,
I’m sorry for all you’ve been through and so glad to see you here exploring how to work with all this and how to make sense of it. Here are some thoughts of potential places to start. Since I don’t know you, I offer a number of options.
See what draws you the most:
1) These are 11 tools I have found most helpful for this journey, 9 of which do not involve trauma therapy. The introduction to that post explains a little about the first 9 things that can each help chip away at the effects of adversity, perhaps while you look for someone with a somatic approach and who maybe works online.
2) Do you have a big picture of how trauma influences health? If not, my free ebook 1 might be a helpful place to get a sense of it all. From there, you might have a better idea of where you’d like to start. You’ll find it on my ebooks page.
3) Your mother’s words towards you, her inability to protect you, and her choosing someone(s) who abused you in so many ways, all speak to trauma in her life / multigenerational trauma. Stephan Hausner’s book in the AMEs section of the list is all about how people can carry trauma from others in the family system – there are lots of stories that might feel encouraging about the possibilities for healing.
4) Your mom’s words and lack of connection to you also sound like there were big shocks or stress during her pregnancy with you, in your birth of first years of life – Tony Madrid’s book on healing asthma might offer helpful insights and compassion (even if you don’t have asthma). See my post about asthma and bonding. This is his gentle, tender book.
5) To look for a somatically based trauma therapist, take a look at the options to help find someone in this post if or when that feels like a helpful step. Many therapists work online and it’s possible to work somatically in this way (I’ve found it works well both as a therapist and as a client).
Welcome.
Hi Veronique, this is great, thanks so much for all you do! As we’ve been in touch, you mentioned putting my Ebook into the mix here. It’s at http://www.traumathrivers.com/Ebook I hope that might be useful for some people too! With very best wishes, Lou
Thanks for sharing Lou – I appreciated just how many resources you reference in your book that are all about healing trauma, including working with Family Constellations as a tool for healing effects of multigenerational trauma, which is a modality I have found to be very powerful. All the best wishes right back!