10th Anniversary: Lessons from a Chronic Illness and Trauma Blog

When I started my chronic illness and trauma blog in 2014 I had been away from practicing family medicine for 15 years and from my second career as a somatic trauma therapist for 5 years. I had had to stop working and had become mostly bed bound for 9 months in 2009. I was still in the thick of exhaustion, which had been diagnosed as chronic fatigue after ruling out other things but I was starting to emerge from the depths of the Grand Canyon of illness. While I still have a baseline of fatigue now in 2024, and normal activities such as blow drying my hair, as one small example, are still remarkably tiring, my health has improved dramatically since then. I attribute it primarily to what an understanding of trauma has done for me, including providing context for my symptoms and flares, helping me find my life partner and all I’ve learned from him, and motivation to keep chipping away at old patterns through a trauma lens and incorporating the skills I learned from therapy into my daily life.

You’ve grown with me and there are now 12,800 of you who are subscribers.

The amount of information on the blog has also grown tremendously and I’ve updated the Menu. It now reads like a department store menu (!) and will hopefully make it easier for you to navigate. As part of celebrating this big anniversary I’ve done a house cleaning of my blog, deleted posts that no longer serve, and updated images so things are more cohesive.

This is my 99th blog post.

Here’s an overview of what I’ve learned from writing a chronic illness and trauma blog, from the research, and from interactions with you here in the past decade. A lot of what I’ve learned has come from you.

Then and Now

This 4 1/2 minute video above is my first recording for the blog in 2014. I can feel the need I had to go slowly, conserve energy by speaking relatively quietly, and how even breathing was effortful at the time. It’s a huge contrast with the energy I now have, with an example below of a chronic pain and trauma webinar I gave a few weeks ago. 20 seconds is enough to give you an idea of the difference. You can learn more about my understanding of the early phase of working with my illness in a 2016 series starting with Post I, and in my history from a broader and more detailed nervous system perspective in 2017 here. I also share tips and examples of working with symptoms here on the blog to offer ideas and support on this trauma healing process and journey.

Recognizing the Trauma Link Even More Deeply

Perhaps the most significant change for me, after my health, is the recognition of how important the role of trauma is in chronic illness and also in so many other symptoms, from mental health to chronic pain and beyond. This understanding has gotten stronger since I started Chronic Illness Trauma Studies even as I already had a sense of it back then. Part of this learning has come from you.

Your Input and Experiences

Your stories have been helping to deepen my understanding through this decade of blogging. I see it in your comments about what you’ve been through. About what you’ve done that helps, that has enabled you to find more stability with symptoms, or to reach more acceptance. I see it in your descriptions in the Chrillogs. I see it in the details you have shared in the surveys and how important (and invisible and covert) developmental trauma is, expressed vividly in graphs from the first ACEs survey here with 3900 responses. I also hear it from you during my talks, such as when you have aha moments on recognizing some of the indicators and symptoms of trauma earlier in your life. Or when some of you share how things didn’t shift despite the 15 things you tried or 10 years of work you did, until you addressed the trauma component. Thank you. Thank you for your emails, your comments, your questions and your participation. You are the reason blogging has been so rewarding for me.

The Research in Trauma and Chronic Illness

Image above is from a blog post on Trauma and Autoimmune Disease

Another source of this deepening conviction for the role of trauma as an important contributor to risk for chronic illness has come from the research.

Because I have had symptoms of chronic fatigue syndrome (ME/CFS) and Irritable Bowel Syndrome (IBS), this is what I first wrote about on the blog along with posts about my story and how making sense of my symptoms from a trauma perspective may also help you make sense of yours, even if you have a different disease. I’ve since added research posts to the blog on the role of trauma for many other chronic conditions including

• Asthma
• Autoimmune Disease with examples from research in Type 1 Diabetes, Lupus and RA
• Chronic Pain
• Type 2 Diabetes
• Rheumatoid Arthritis / Disease (RA/RD)
• Parkinson’s
• Insulin Resistance (IR).

I plan to add more of the research for additional chronic diseases as I continue with the blog.

In 10 years my curated database of 8,000 articles is now at 13,000 references.

For ease and context, I’ve classified the research into 8 categories of adversity that affect risk for chronic illness and other health conditions such as mental health conditions and chronic pain. A good place to start for more information is the Planting Seeds for Healing post, which has links to each of the 8 categories and relevant posts.

Threat Physiology

Image above is from a blog post on What we might learn from hibernating bears

What I’m finding intriguing as a next level of exploration are the occasional, still hard-to-find studies that support a view I learned in my Somatic Experiencing (SE) trauma training, which finds that symptoms of chronic illness are driven by a physiological threat response that’s gotten stuck and unable to shift. I recently described a finding that bears in hibernation are in a state of insulin resistance, which is a common state associated with certain chronic diseases such as type 2 diabetes and obesity. Unlike people with chronic illness, bears’ physiologies shift as the state of their environments change. What it suggests is that our task is to help our systems relearn, regain, or access that ability to shift that I believe we all have as our healthy blueprint that underlies our symptoms. I’ll be introducing different animal models to represent this concept that threat physiology is a normal response driving symptoms of chronic illness when it gets prolonged.

Additional mechanisms for the role of environmental factors in chronic illness, including life experiences such as trauma, are:

• brain plasticity and pruning
• the cell danger response (CDR)
• the nervous system
• polyvagal theory
• an example of how specific types of adversity, such as in babyhood, have been found to alter gene function through epigenetics.

Shifts Can Be Faster and Flares Less Severe

Image from a blog post on 16 Clues for Triggers and Flares

Another reason for my greater recognition of the role of trauma has been observing how much my fatigue and flares ups have linked to trauma-related triggers over the years. I catch them more easily and quickly now, and often recognize them because the same patterns have triggered flare-ups before. The most rewarding feedback has been that my flares often resolve more quickly because I can identify the triggers and work through them more quickly as well. Sometimes, it’s within hours. Other times, within days. They are also rarely as severe as my fatigue was years ago. When that happens on occasion, I know there’s a bigger trigger for me to decipher.

The Sources of My Triggers Were a Surprise

Image from What Trauma Therapy Looks Like in a video with a dog named Kane

Most triggers, for me – and I’m curious to learn more from you – link to developmental trauma and adverse childhood relationship experiences (ACREs). I’ve been triggered during a phone call with a relative, for example, and watched my energy shift from good to exhausted in an instant. Recognizing the feeling of guilt I was having, and the immediate response in my body, helped me see the link. So does the fact of actively looking for links when I have a flare. This awareness helped me keep a “witness” on board so I didn’t fully believe the symptom and crawl into bed. Knowing I was triggered, I took my body, my fatigue and my awareness out for my daily walk. The flare up resolved as I found my anger and my boundary underneath the feelings that had taken over. I was able to talk myself out of the guilt reaction I’d had, and acknowledge that it was unnecessary and that I could instead choose to take action if that felt like a good response.

Beliefs Can Be Interwoven with Physiology

Image from a blog post introducing the role of Developmental Trauma: ACREs I

There’s nothing like watching one’s system find the ability to shift when we can change something and access more of my own power, self-respect and clarity. The process of working to support shifts out of threat and freeze responses and into more connection seems to be lifting the layers of physiological patterns in my body. These patterns are deeply intertwined with beliefs I learned in early life and that used to be unconscious. These patterns and beliefs, it turns out, aren’t just “in our heads.” They are profoundly interwoven into well established physiological patterns. It is taking me quite a while to work through these layers, and yet my system keeps shifting and softening. I suspect this is a large part of why the healing process can take so long, and is often a life long practice, for many of us.One present moment practice at a time.

Recognizing My Disconnection and Freeze

Image from a blog post introducing Freeze as a driver of Chronic Fatigue

We don’t know what we don’t know until it somehow becomes visible. That’s what trauma is about. It cuts us off from ourselves and takes things out of our awareness. David has helped me learn about connection in the past 14 years. I never knew how much confusion I have around emotions and connection until his clear-eyed ability to feel it, see it and name it helped me begin to recognize my blind spots. In the beginning, I didn’t even know I was in states of emotional disconnection and freeze. The process of being able to name and identify these states for myself has gradually become easier. It’s part of how I’m shedding layers and starting to be able to help my system shift more easily in and out of my body’s patterns of threat physiology and freeze. For example, I can tell more easily now when I’m disconnected (and in freeze). It’s no longer because I’m in a fatigue flare, which is huge progress. Instead, it’s often emotional. I notice that I don’t feel as empathic, or that a space I am in that usually feels good now feels distant or cold. I recognize more easily now that it feels distant when I’ve disconnected from myself.

Origins of Threat Physiology and Triggers

Image from a blog post on a way of working with Multigenerational Trauma

Spending time with relatives is another experience that helps me see where at least some of my threat physiology comes from. As I learn to recognize these patterns in myself, and especially as I learn to do so without judgement or reaction as part of trauma healing, I can more easily recognize the patterns in my family system. It’s there to a much larger extent than I ever realized and I see a little more with each visit. Being around family can also stimulate my own patterns of withdrawal and shutdown. It’s a two-fer: Seeing links in the family system and to my own system. What’s been interesting in the past few years has been to realize, to my great surprise, how much behavioral and emotional freeze is in my family. I’d always thought it was just me. And that I was somehow the broken one in the family. I imagine that many of you have learned to believe that too. I suspect this is common for most of us with chronic illness – the patterns that have contributed to our chronic illnesses may often also exist in different forms, and with different expressions, in family members. This may look like mental health conditions in some, addictions and reliance on substances for self-soothing in others, the health of relationships etc. Our symptoms, in other words, don’t come out of the blue as we’ve often thought. Chronic illness is just the way our own symptoms are manifesting.

Surveys & Survey Pages for Specific Diseases

Image from page dedicated to IBS for taking the 5 Surveys

There are 5 surveys on the blog that I updated earlier this year to be able to evaluate your input about adverse experiences with specific chronic illnesses and other health conditions you have. You have filled out 850 individual surveys so far! I read your responses and continue to be deeply moved, and humbled, by what you have been through. I also see just how hard you have been working on and with your health. I look forward to sharing some of the findings as the data you are providing grows.

These 5 surveys can be found with more ease in the updated blog Menu. You can see and take all 5 on this main All Surveys page. You can also, instead, take the (same) 5 surveys on one of the new pages I’ve added for a number of chronic diseases, which provide a little specific information on each of these chronic illnesses:

• Autoimmune
• Asthma
• Chronic Fatigue
• Chronic Pain
• Fibromyalgia
• Insulin Resistance
• Irritable Bowel Syndrome (IBS)
• Lupus
• Medically Unexplained Symptoms (MUS)
• RA
• Parkinson’s
• Type 1 diabetes
• Type 2 diabetes

Next Steps on a Chronic Illness and Trauma Blog

Going forward with my chronic illness and trauma blog I plan to continue writing. I also have some exciting new ideas that are just starting to formulate. I am working with these ideas during periods of increased energy and making space for the rest periods and pacing I need as I continue to use these principles with my health.

Educating

The focus of my blog, and my greatest passion, has been providing information that supports and validates the role of trauma in chronic illness. My primary goal of the past decade has been to collect and make available this hard-to-find information for people living with a chronic illness in particular and that is growing to include folks with all kinds of chronic illness conditions. I’ve wanted to do this so that you don’t have to wait for your medical professionals to learn about it. I plan to keep writing and blogging because I love this format.

Consulting

The information about the role of trauma in chronic illness, including about flares and triggers, patterns of development of symptoms, and how symptoms reflect threat physiology, along with how to work with it to support healing, remains obscure. While I have not resumed offering psychotherapy I have gained the capacity this year to begin offering chronic illness and trauma consultations. I am so appreciating engaging with you in this way. Among the most poignant feedback you have given me about your consults is how healing it feels to be seen so clearly. Consults are for:

• Health professionals
• Somatic Experiencing students for credit at all levels
• People living with chronic illness
• Help creating a 1 Page medical histories to simplify medical appointments

The Dream

My dream is for the information about the role of trauma in chronic health conditions to become incorporated into routine medical care and part of accepted knowledge in our understanding of health. In that vein, I published an article in a psychology journal introducing the construct of Adverse Babyhood Experiences (ABEs) in 2020. I have recently submitted an article to the USA Association for Body Psychotherapists (USABP) on ABEs and chronic illness that, if accepted, will be published in January 2025 in a volume focused on the Pre and Perinatal Field. The idea was the brain child of editor for the International Journal Aline LaPierre, PsyD, MFT, founder of NeuroAffective Touch^® and President of the USABP; and Kate White, MA, LMT, founder of Prenatal and Perinatal Somatics Institute, who invited me to submit an article about ABEs. Next, I want to submit an article to a medical journal.

Presenting

I have gently resumed presenting after a 2 year break, including through webinars and podcasts. I gave my first in-person presentation at the ATTACh 2024 conference in Denver in September. It was so connecting to interact directly with an audience. You can find most of these podcasts, a radio interview and others on my media page.

Classes

I am thinking about creating a series of classes on specific chronic diseases. One impulse I have is to teach more about the research evidence for individual diseases, such as a class on Trauma and Type 1 diabetes, a class on Trauma and Parkinson’s, or one on Trauma and Chronic Fatigue and others listed above in the Surveys. My focus would be on providing more detail and to explore how trauma affects symptoms and flares, with time for live Q&A. The more understanding we have about the trauma connection, the more we can trust, work with and refine the tools already at our disposal. I might then make these individual classes available on the blog on demand. Given my personal areas of interest and the wide variety of trauma healing modalities and tools already available, I would not focus on treatment. Would you be interested? What might you specifically be looking for if this might be a fit for you? Or what would it be if it’s something different you might be looking for? I’d love to hear more from you.

I will be co-teaching a 1 year course on Adverse Babyhood Experiences for health professionals with 3 or 4 others, headed by colleague and pre and perinatal trauma therapist Kate White, PPNP. Our tentative plans are to have a one day intro in the spring and start the multi-module course next fall. I’ll keep you posted.

Instagram Adventure

I love pictures and creating images and, after shying away from sharing much on social media other than occasional postings on facebook, I’m going to start playing with Instagram in the next month. If it’s of interest you can Join me there.

Resources

Image from my blog page with a few dozen free eBooks and fact sheets

An important outcome of understanding trauma is that it provides tools and resources. As such, I’ve developed a number of free resources over the past decade. These include:

• Free downloadable eBooks; I’ve updated many covers, content is the same
• Book recommendations specifically for chronic illness and trauma
• Free fact sheets to educate your doctor
• List of directories and tips to Find a trauma therapist and what to look for
• Video example of what trauma therapy looks like with a dog named Kane
• Media page with Podcasts, webinars, summits and presentations
• Tips that help with symptoms from a trauma and nervous system perspective
• “Working with symptoms” posts include tips and more recommendations

I’m so glad to be walking with you on this journey. Thank you for joining me.