The Risks of Labeling Brain Injury

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In the 1980s, one of my psychology professors at the University of Toronto advocated against using labels for psychological or psychiatric diagnoses. "Why not?” I questioned. “How else will we know what illness they have? Labels being bad sounds like psychological mumbo jumbo.” By the end of that school year, I understood how labels stigmatize and limit recovery.

Humans use labels to distinguish between themselves and those not like them.

Psychological and psychiatric diagnoses are, by and large, labels applied to a conglomeration of symptoms that are assessed subjectively without being objectively tested through specific neurophysiological corollaries. But ones like “broken femur” are specific, carry no connotations, and tell the treating physician what needs healing.

A diagnostic label like “brain injury” is non-specific and carries the false connotation of “dumb.”

Although I knew about that connotation at the time of my own closed head injury, aka traumatic brain injury or concussion, I was unprepared for the resentment toward me and the doubt in my diagnosis from my IQ measuring higher than average (although much lower than pre-injury); nor was I prepared for the slow devolution of respect in my knowledge and reasoning skills. On the surface, people speak to me with respect. But their actions belie their words. The unconscious bias underlying both responses is that people with brain injury are unintelligent and can’t change. The label shuts us into a box that limits our healing.

Over the decades, labeling has expanded to the point that people seem to collect labels like candy. Concurrently, medication use has grown.

According to Sims et al. in their 2021 paper, “Worldwide there has been an increase in the use of diagnostic labels for both physical and psychological diagnoses.” They studied the consequences of an individual, family, health care professional, or community applying diagnostic labels. They determined five primary themes, each containing multiple subthemes:

1. Psychosocial impact (e.g., positive or negative psychological impact, social and self-identity, stigma)
2. Support (e.g., increased, decreased, relationship changes, professional interactions)
3. Future planning (e.g., action and uncertainty)
4. Behavior (e.g., beneficial or detrimental modifications)
5. Treatment expectations (e.g., positive or negative experiences)

Their paper looked at 128 primary studies and 18 reviews, focusing mostly on individual perspectives.

“…of the studies in our review which reported a psychosocial consequence of a diagnostic label, 60 percent of these reported negative psychological impacts, compared with 46 percent that reported positive psychological impacts. The results…suggest many individuals experience changes in their relationships with health care providers (and the latter agreed), lost emotional support, and experienced a mix of both beneficial and detrimental changes in behavior due to the diagnostic label.”

This conclusion would surprise no one with a brain injury. Just as my professor warned against the deleterious effect of diagnostic labeling and being judicious when applying them, so, too, do these authors.

“...social constructionism, labeling, and modified labeling theories...suggest diagnostic labeling activates multifaceted responses, including impacting multiple areas of an individuals' well-being and identity as well as evoking a range of societal assumptions…individuals, family/caregivers, health care professionals and community members [need] to be more aware of the potential consequences of diagnostic labels.”

In two 2024 studies by Altmann et al, participants judged a person before and after a diagnostic label was applied to a vignette of a marginal level of mental ill health. In Study 1, the application led to more empathy, but also increased the belief that problems persist, potentially making diagnostic labels part of the affected person’s identity. It did not legitimize the provision of allowances at home, work, or school, and had varying effects on the participants’ perceptions, depending on the mental illness label.

The authors repeated the study, using a simplified design to overcome the limitations of the original study. Study 2 showed opposite effects in accommodation and identity.

However, as most of us with brain injury can attest, the real world does not accommodate beyond lip service, does not have empathy in a practical, supportive way, and incorporates labels into identity.

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The Consequences of the Sports Concussion

The Impact of Head Injury on Brain Health

I used the label “brain injury” because I felt people could understand that label better than the original “closed head injury.” I mean, what does “closed head” mean to a non-medical person?

“Traumatic brain injury” seemed specific, but “traumatic” can be physical, psychological, or social. Adding “mild” to my catastrophic traumatic brain injury also confused me and others. My psychologist explained that “mild” in medical-ese meant I could walk and talk even though both were impaired. Adding the non-specific, subjective label “mild” only legitimized people telling me to “get on with my life.”

In a 2008 survey of 3,998 Australian adults, Jorm and Griffiths concluded that stigma from labels arises from “behavior associated with mental illness and the belief that this is because of personal weakness.”

So how should we label a physical injury that carries pre-judgements of unintelligence, persistent problem, incurable, behaviorally problematic, or weak character?

I think “physical” gives us a clue. Whether it’s a concussion that presents with mild or no symptoms at the ER or a severe head injury requiring surgery and ICU care, an injury to the brain should be assessed using appropriate objective diagnostic tools and re-assessed as recovery progresses with treatment.

After a concussion, start with a non-invasive 30-minute to hour-long qEEG at a minimum. Require sleep studies and computerized tests like IVA, TOVA, and evoke potentials. Don’t rely only on expensive scans like MRI, CT, SPECT, DTI, and PET, but combine one or more with a qEEG and sleep study.

Objective tests identify affected areas.

For example, instead of the limiting label “brain injury,” they’d lead to terms like “three standard deviations above the norm in 9 Hz in the cingulate gyrus.” Highly specific and, when correlated with identified deficits such as evaluative judgment and working memory, they’d point to the areas needing treatment to restore deficits. This approach lifts us out of the constraining box, counters the falsehood of personal weakness, and opens us up to reaching our potential since it’s an objectively determined physical finding with known (and unknown) behavioral, emotional, psychological, cognitive, and social effects.

It counters loss of hope, incurability, and the stigma of unintelligence. It gives the person and their family a roadmap to health.

Copyright ©2025 Shireen Anne Jeejeebhoy