No Minor Inconvenience: The Trouble with Describing Head Injuries as Mild

For head injuries like a concussion where consciousness is not lost and medical imaging and CT scans come back as Normal, “mild” and “minor” are not helpful descriptors. These words put your experience in direct comparison to other head injuries higher on a scale. They underscore the prevailing assumption that if you are able to open your eyes, walk, and talk immediately after a head injury, you will fully recover in 2 weeks.

“Mild” and “minor” head injuries have their own unique challenges and complications such as loss of identity and sense of self, personality changes, mood swings, mental health complications, and obstacles in returning to work. While “mild” and “minor” are the terms used by health professionals to categorize the severity of injury, they are problematic because they:

1. do not reflect the potentially life-changing impact of the injury

2. only label one point in time: immediately after injury

3. are used in conversation with someone who may not be aware they are impaired (Anosognosia)

1. Life-changing Impact

Check out these synonyms for mild and minor:

MILD: breezy, calm, gentle, soothing, merciful, lenient, good-tempered, easy, warm, tame

MINOR: unimportant, casual, inconsequential, paltry, negligible, trivial, trifling

Doesn’t sound too bad, right?

Before my head injuries, I tackled everything with gusto. I wanted to do life at 110% all the time and to constantly improve myself. So I interpreted this language as it would be easy for me to overcome this trivial inconvenience. And because I believed this, I:

- Worked at only a slightly lower gear at my demanding leadership job

- Obsessed over how long it would take me to heal

- Asked myself repeatedly how I could actively speed up healing without realizing this hurt me more

- Doubled down on shame I felt about missing work and guilt about letting down my team

- Leaned into my anger and frustration when my experience was nothing like what I was told it should be by my medical team

Another way of thinking about this dismissive language is that it downplays the challenges of getting better from a head injury because it sets the experience up as the smallest of 3 possible hurdles.

Assessment tools like the Glasgow Coma Scale position mild brain injury as the lowest point in a range simplified to 3 levels: mild/minor, moderate, and severe. Severe is sometimes called catastrophic. In this commonly used chart below, notice how the selected criteria start to become relevant only in cases of moderate and severe head injuries but they don’t really apply to the mild ones. In fact, mild brain injuries barely register on this scale because 15 is the highest you can score, which represents a healthy, uninjured brain.

There are dozens of brain specific assessment tools out there used by healthcare professionals to gauge these types of injuries. The Disability Rating Scale (DRS), developed for individuals with moderate and severe traumatic brain injury in an inpatient rehab setting, has known limitations: at the low end of the scale it is not sensitive to mild brain injuries and it does not capture more subtle changes in an individual.

Rather than providing desperately needed clarity, many of these assessment scales can actually increase the confusion and lack of confidence one feels as a result of a mild head injury because the questions don’t seem relevant and the criteria don’t apply. (A more nuanced tool is QOLIBRI, the first instrument specifically developed to assess health-related quality of life of individuals after traumatic brain injury including categories like Self, Social Relationships, and Emotions.)

2. One Point In Time

Another layer is how the language “mild” and “minor” only definitively captures the brief moment of diagnosis shortly after impact. What has happened over the 48 hours before you realized you needed to see a doctor? What if the full extent of the injury is still not detectable when the assessment is being performed? What about those of us who don’t know we have experienced a health crisis until it gets much worse? These tools miss capturing the experience of long lasting post concussion syndrome. And they don’t address that brain injury can change your life forever.

Oftentimes my clients who experienced a “mild” head injury simply cannot function. Because their headaches are constant, or they experience suicidal thoughts due to the chemical shifts inside their brain tissues, or they have lost their ability to think clearly. These crises change our relationship to time, to planning, to the future, and completely disrupt our lives.

The language “mild” and “minor” biases our conception of healing because we see it as a two week process. And then, if we are part of the small percentage of people who don’t recover in two weeks, we feel like we have failed. We start to fixate on getting better in 2 years because there’s all this outdated literature about this 2 year deadline as the point of no further healing. Please know that there is no deadline for healing from a mild head injury. It takes the time it takes. All we can do is smooth out our own process.

I remember well the conversation I had with the attending physician at the walk in clinic after my second head injury. He told me I had a mild concussion and would be better in two weeks. He recommended that I reduce screen time and rest. There was no discussion around the following key points:

1. the first two weeks are critical and you must commit totally to unplugging: quantifiable as zero screen time (phone, computer, tv), no busy environments, no driving, etc.

2. it can take time for your symptoms to appear and they can increase before they start to resolve

3. Rowan’s Law and second impact syndrome mean your brain is particularly vulnerable right now

Things did not get better after two weeks, 8 weeks, or even 2 months. I wish one of the dozen paramedical professionals that I sought out had explained to me:

1. what to look for in long term post concussion symptoms

2. the personality changes, identity loss, and profound mental health impacts this type of injury is known for

3. that I would have setbacks and flare ups which would feel insurmountable if I did not rest

We are way behind in brain injury awareness and treatment in Ontario. And this area of medicine has some of the highest unmet needs. But there is forward thinking out there about disability that we can learn from. I really appreciate the inclusive and progressive definition of disabilities put forth by the Canada Council for the Arts, an exemplary organization operating at arms length from the government to promote the arts in Canada:

“Disabilities… are physical, mental or learning conditions that have long-term, temporary or fluctuating effects.”

This fluctuation is part of what makes mild brain injury so unique. If I was to rename this category of head injury I would call it Unreliable Brain Syndrome because our brains need to be assessed over and over again in many different kinds of scenarios to see how they uniquely respond to different types of stress. Many of us need to be self-monitoring all the time to prevent flare ups which means we need to know how to self-assess, how to interpret our findings, and how to reduce our symptoms.

The Unreliable Brain

Life threatening complications can develop after “mild” and “minor” injuries as our brains become unreliable. In my case, while my head injuries were not catastrophic or life threatening themselves, it certainly felt like the aftereffects were. My three head injuries:

- factor heavily into our decision not to pursue having children

- cause me to struggle with regular bouts of suicidal ideation

- limit my capacity so I can’t work full time and may never do so again

3. Anosognosia

This last layer is the most complex. When we are speaking with our doctors, healthcare team, family, and even in dialogue with ourselves, we may lack full awareness of our injury. This is a common symptom of brain injury and a known complicating factor. The formal medical term for this medical condition is anosognosia, from the Greek meaning “to not know a disease.” It means someone has a neurological condition that prevents them from perceiving their own situation accurately.

How can we help people around us truly understand how we are doing if we lack awareness? How can we confidently self-assess when the very part of us needing assessment is what is impaired? Especially if we think we are fine? My dear friend who experienced a brain injury expressed this beautifully as she shared her realization that she had given totally the wrong information to someone:

“Your brain lies to you.”

“Mild” and “minor” head injuries are in fact a whole different type of head injury. So if you don’t find this language helpful, you are not alone in your healing journey. Don't use it! There are other ways to work through it, other ways to self-identify.

Here’s what it looks like to pivot when you have a brain injury:

1. Accept that healing has no deadline. (not 2 weeks, not 2 years…)

2. Grow from your experience rather than striving for full recovery to the person you once were. (Not easy but life affirming.)

3. Discover what is common about your injury with others like yourself to gain perspective and build community.

4. Ask yourself what is totally unique about your injury so you can seek out the right specialized support.

5. Honour that your energy is your single most important asset now.