When I was a family doctor 20 years ago, I thought the only effects of trauma were psychological and that the main symptom was post traumatic stress disorder (PTSD). Since I was not a psychiatrist, it didn’t seem relevant to my work.

It wasn’t until I left medicine in hopes of better understanding root causes of chronic illness that I learned what trauma really was and that chronic illness can be traumatizing.

Two experiences made all the difference.

First, when I retrained as a somatic trauma therapist I was introduced to research I’d never heard of in my medical training.

Second –  I developed a chronic illness myself and it gave me the painful motivation to search for answers in an even more dedicated way.

*This article is also published on the chronic illness blog called The Mighty.*

I’ve had debilitating chronic fatigue syndrome (ME/CFS) for 20 years. At my worst, I was almost entirely bed-ridden for 9 months. There’s nothing like living with a disease to truly understand what it’s like – the death-like exhaustion that doesn’t improve with rest, the vulnerability, the fear that a symptom might be life-threatening, the sense that you might keep worsening until you actually die and no one will be able to help you, the side effects, the frustration and desperation when nothing works, as well as the loss of social connections and work and income and so much more.

I’ve learned a lot from being sick and looking into the research. One of the most helpful things has been the realization that having a chronic illness can be traumatizing. This understanding has also been a powerful tool in helping me begin to heal.

Here’s How Chronic Illness Can Be Traumatizing

And in #7 and #8, tips on what you can do about it:

1. Trauma is Caused by Experiences of Relative Helplessness

Trauma can be defined as any event that triggers relative helplessness. Experiences associated with helplessness – often without our consciously realizing it – include car accidents, a scary medical procedure, the sudden death of a loved one, being given a diagnosis of an incurable disease, and more. Such events trigger the same pathways in the brain as do abuse, rape or war.

2. Anxiety and Depression are Common Effects of Trauma

You don’t have to develop PTSD to know you’ve experienced trauma. Two of the most common symptoms of trauma are anxiety and depression ⁽¹⁾McFarlane AC, De Girolamo G. Chapter 7: The Nature of Traumatic Stressors and the Epidemiology of Posttraumatic Reactions. In: van der Kolk BA, McFarlane AC, Weisaeth L, eds. Traumatic stress: the effects of overwhelming experience on mind, body, and society. New York: Guilford 1996. p. 160. These are also very frequent in people living with chronic illness. A lack of trauma awareness means that many health care professionals treat anxiety or depression as their primary approach to our diseases, thinking these are the cause. They still-too-often believe our illnesses are “all in our heads.” Trauma science, however, explains how these symptoms can be caused by chronic diseases themselves, and from painful, frightening, unpredictable, debilitating symptoms for which there are few or no treatments.

3. Past Trauma Can Cause Chronic Illness, Anxiety & Depression

Anxiety, depression and chronic illnesses of all kinds can be caused by adverse childhood experiences (ACEs), invisible ACEs, multigenerational trauma, and institutional trauma such as discrimination due to race, religion, sexual orientation. The research explains how trauma is a risk factor for all of these symptoms. It also explains how the effects of trauma are not because we’re weak or broken or have a personality flaw, but because adverse life experiences interact with our bodies, brains and physiologies to shape long-term health ⁽²⁾Shonkoff JP, Garner AS, Committee on Psychosocial Aspects of C, et al. The lifelong effects of early childhood adversity and toxic stress. Pediatrics 2012;129(1):e232-46. doi: 10.1542/peds.2011-2663, ⁽³⁾Yehuda R, Hoge CW, McFarlane AC, et al. Post-traumatic stress disorder. Nature Reviews Disease Primers 2015;October:150-57. doi: 10.1038/nrdp.2015.57, shared causation p. 19-2.

4.The View that Disease is “All in Your Head” is Traumatizing  & False

If you have a chronic illness and a history of trauma, your doctors may have told you your symptoms are psychological or all in your head. This is still frequently stated to people who have an illness that can’t be diagnosed or for which no reliable tests yet exist (such as ME/CFS and so many other diseases). This all-too common perspective is belittling and traumatizing to patients. It has also been disproven. The science of epigenetics is revealing that life experiences influence the way our genes function and the degree to which they turn on and off ⁽⁴⁾Hurley D. Grandma’s experiences leave a mark on your genes: Your ancestors’ lousy childhoods or excellent adventures might change your personality, bequeathing anxiety or resilience by altering the epigenetic expressions of genes in the brain. Discover, 2013. This is just one of the many mechanisms being discovered that drive chronic disease and symptoms of all kinds.

5. Medical Care is Often Traumatizing

Being disbelieved, judged, shamed or told that a complaint isn’t real, is a form of abuse. When the social worker snickers behind the hospital curtain or a nurse whispers outside the office door that someone’s inability to eat or get to the bathroom is due to laziness or faking it, this is also a form of trauma. Medical procedures that pose a threat to our bodies or our lives – or that are simply scary – are also potential sources of trauma ⁽⁵⁾Alonzo AA. The experience of chronic illness and post-traumatic stress disorder: the consequences of cumulative adversity. Soc Sci Med 2000;50(10):1475-84. These are routine experiences for people living with chronic illness. The fact that these events are common, however, does not make them benign. It’s one reason that chronic illness can be traumatizing.

6. Triggers are Indicators of Past Trauma

The act of scheduling a medical appointment, going to a hospital, or having a procedure often triggers flare-ups or set backs for people with chronic illness. We may develop brain fuzz, feel shaky or have trouble sleeping before or after such events. Sometimes we avoid doctor visits altogether, despite the possibility our symptoms may get worse. We can also have flares even if we’ve gone to help a family member rather than for ourselves. These kinds of behaviors and bodily responses are evidence of more than simple stress. They are normal indications of unresolved trauma. It’s common to become more sensitive to medical environments over time. Exposures to difficult experiences and procedures accumulate when you have a chronic disease. This is an often-overlooked reason why events that seem ordinary and that we feel we should be able to easily cope with, can act as trauma triggers ⁽⁶⁾Lawrence-Wood E, Van Hooff M, Baur J, et al. Re-experiencing phenomena following a disaster: The long-term predictive role of intrusion symptoms in the development of post-trauma depression and anxiety. J Affect Disord 2015;190:278-81. doi: 10.1016/j.jad.2015.10.029.

7. Understanding Trauma Empowers

When you begin to understand trauma, you start to recognize that your sweaty palms and increased heart rate during medical appointments may be a trauma response. You start to look for – and gradually identify – events that trigger your flare-ups. As a result, you regain power and control in your life, even if you have a debilitating chronic disease. You learn that anything that increases your sense of safety, ease, joy or connection can decrease your threat response. You learn to ask yourself, “Am I in danger?” and that the act of consciously clarifying when you’re safe can decrease or alleviate your symptoms. What you discover is that you can sometimes lessen your flares and even prevent them.

8. Trauma Perspectives Introduce Options

Once you understand how your body reacts to your own particular stressors and triggers, you have more options. You may find that you are less stressed when you can schedule appointments at the beginning of your doctor’s day so that you spend less time waiting or in the waiting room. Conversely, you may realize you do better with the last appointment of the morning when your doctor seems less rushed. You may retain more information when you bring a friend to appointments or procedures.  You may change doctors when they patronize you or don’t hear your concerns. Just as each one of us becomes an expert about our own disease – understanding trauma can help us become experts in self-care and in managing our illness.