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Health Care and Public Policy Must Consider the Needs of People Living with Invisible Disabilities

Traumatic brain injuries (TBI) of any severity are one of the leading causes of disability. People with TBI may not only experience a reduced quality of life, but also stigma and negative attitudes about their disability from other people. The term “disability” is broad and generally indicates that a person has impairments that create barriers to full participation in society as compared to people without the same impairments. While the term typically conjures up the image of physical disabilities, it also encompasses conditions not typically accepted as disability or even seen at all, such as headaches, chronic fatigue, cognitive challenges, or mental illness.

In high-income countries, advances in medical technology and care have led to increased survival rates and longer lifespans in people with moderate to severe TBI. Research suggests that people with more significant physical disabilities are able to apply adaptations and accommodations towards maintaining a relatively high quality of life. However, studies also show that individuals with less visible impairments, such as those seen in mild TBI, tend to report a relatively lower quality of life and worse depressive symptoms. Researchers hypothesize that this counterintuitive relationship between lower quality of life and less severe or less visible injuries may be because a person with “invisible” injuries tends to not be recognized as experiencing an impairment. As a result, they may have access to fewer aids or services, experience an unrealistic expectations (from themselves or by others) to function as they did prior to injury, and feel a lower sense of self-worth and self-efficacy.

Mild TBI commonly results in “invisible” impairments such as headaches, vision impairment, cognitive impairment, and mental health issues such as anxiety or depression. People with mild TBI may find that other people devalue or invalidate the severity of their impairments, or downplay the TBI. People with mild TBI also tend not to have follow-up appointments with their doctors or be recommended for rehabilitation or support programs, exposing a bias even within the medical community.

It is important to address all disability in TBI communities on all levels, regardless of how visible they are. People with mild TBI, in particular, should receive increased long-term support from medical practitioners to assess and treat their ongoing symptoms. Individuals with mild TBI would also benefit from the creation of destigmatized online or in-person spaces to meet and form inclusive communities, as strong social and emotional support can be found in others who share similar injuries and symptoms.

People with mild TBI seeking rehabilitative services during the COVID-19 pandemic may also benefit from telehealth platforms, which can be used to bring a wide variety of services to those who need them, especially in rural or remote areas. Telehealth service can encompass assessments, supervision, counseling, skills training, and service training via flexible delivery methods via telephone, text messaging, email, and video conferencing. Telehealth has already shown effectiveness in helping people with mild TBI in particular: a recent study found that daily text messaging over eight weeks improved mood and participation in activities.

People with invisible disabilities may feel the repercussions from the stigma and discrimination that typically surrounds more visible disabilities, but may also experience an additional stigma of not feeling validated or taken seriously. Addressing all barriers for people with disabilities—regardless of perception from the general public—is crucial to clarifying understanding of disability and, critically, dismantling the stigma surrounding it. All disabled communities deserve amplified voices, whether or not their disabilities are visible to others. Public policymakers must hear and include the needs of all disabled people as communities work towards dissolving the barriers that prevent disabled people from fully accessing and participating in all spaces and activities.

Rauen K, Späni C, Tartaglia M, et al. Quality of life after traumatic brain injury: a cross-sectional analysis uncovers age- and sex-related differences over the adult life span. GeroScience. (October 2020).

Cicerone K, Azulay J. Perceived self-efficacy and life satisfaction after traumatic brain injury. Journal of Head Trauma Rehabilitation. (September 2007).

Riley G, Hagger B. Disclosure of a stigmatized identity: a qualitative study of the reasons why people choose to tell or not tell others about their traumatic brain injury. Brain Injury. (August 2015).

Ownsworth T, Theodoros D, Cahill L, et al. Perceived usability and acceptability of videoconferencing for delivering community-based rehabilitation to individuals with acquired brain injury: a qualitative investigation. Journal of the International Neuropsychological Society. (January 2020).

Hart T, Vaccaro M, Collier G, et al. Promoting mental health in a traumatic brain injury using single-session Behavioural Activation and SMS messaging: A randomized controlled trial. Neuropsychological Rehabilitation. (March 2019).

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