8 Things I Learned About Trauma After Being Diagnosed With a Chronic Illness

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. Two experiences made all the difference. First, when I retrained as a somatic trauma therapist and was introduced to research I’d never heard of in my medical training. Second — when I developed a chronic illness myself.

At my worst, I became almost entirely bed-ridden for nine months from chronic fatigue syndrome (ME/CFS). There’s nothing like living with a disease to truly understand what it’s like — 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. 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.

These are eight lessons I’ve learned from trauma science and research that can help with process life with chronic illness:

1. Trauma is caused by experiences of relative helplessness.

Trauma can be defined as any event that triggers relative helplessness — a car accident, a scary medical procedure, the sudden death of a loved one, being given a diagnosis of an incurable disease. 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. These conditions occur frequently 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 believe our illnesses are “all in our heads.” Trauma science, on the other hand, explains how these symptoms can be caused by chronic diseases themselves, and from painful, frightening, unpredictable symptoms for which there are few or no treatments.

3. Past trauma can cause chronic illness, anxiety and depression.

Anxiety, depression and chronic illnesses of all kinds can be caused by adverse childhood experiences (ACEs), multigenerational trauma, and institutional trauma such as discrimination due to race, religion, and/or 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, but because adverse life experiences interact with our bodies, brains and physiologies to shape long-term health.

4. The view that chronic illness is “psychological” is false and out-of-date.

If you have a chronic illness and your doctor knows you have a history of trauma, they may have told you your symptoms are psychological or all in your head. This may have happened if you have an illness that can’t be diagnosed. This all-too-common perspective is traumatizing as well as inaccurate. 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.

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 our inability to eat or get to the bathroom is due to laziness or “faking it,” this is also a type of trauma. Medical procedures that are scary or pose actual threat to our bodies or our lives are also potential sources of trauma. These are routine experiences for people living with chronic illness. The fact that these events are common, however, does not make them benign.

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 fog, 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 as our exposures to difficult events accumulate simply because we have a chronic disease. This is an often-overlooked reason why events that seem ordinary and we feel we should be able to easily cope with, can act as trauma triggers.

7. Understanding trauma can empower you.

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 realize you often have options. 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 maybe even prevent them.

8. Trauma perspectives offer new choices.

Once you understand how your body reacts to your own particular stressors and triggers, you gain 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 belittle you or don’t hear your concerns about a procedure. 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.

How has trauma affected your life with chronic illness? Let us know in the comments below.

Follow this author’s blog on Chronic Illness Trauma Studies