Uncovering Invisible Disabilities

Stigma is a complex concept and construct, referring to any negative or rejecting attitudes towards a specific group in society (1). It may look like discrimination, or lack of empathy or support, and can affect people in various harmful ways. There is a plethora of research on the impact of stigma on ABI survivors, specifically of its role in undermining social relationships after an ABI, which will be the focus of this blog post.  

The stigma faced by ABI survivors can be grouped into 3 categories; direct stigma, anticipated stigma, and internalized stigma (1).

Responses of Others to the ABI (Direct Stigma)

The stigmatic responses of others to individuals with an ABI can be associated with the lack of awareness about invisible disabilities. Without the knowledge and awareness of invisible disabilities, especially pertaining to ABI, people may refuse to acknowledge the severity of impact caused by an ABI, and consequently not provide survivors with the support, empathy, and accommodations they require to positively participate in society (2). If a survivor’s experience is invalidated in this way, many harmful effects may ensue. For instance, a survivor may be reluctant to seek help or treatment, in fear of not being accepted and understood for what they have gone through and how that affects their needs now. Moreover, people may also disregard individuals with an ABI as less qualified or capable because of their injury, and in turn limit their access to opportunities; this type of stigma is mostly experienced in the workplace (3). Stigma in the form of negative attitudes and a lack of understanding by family, friends, or even acquaintances may lead to social isolation, feelings of shame and hopelessness, and an overall decline in mental health (4). These responses are based on a lack of foundation and knowledge on ABI and invisible disabilities, and have far reaching negative consequences on individuals with an ABI and their quality of life (5).   

Anxiety–Induced Concealing of Information (Anticipated Stigma)

Anxiety-induced concealing of information prevents a survivor from reaching out and making use of the resources that are in place to support them and integrate them into society (1), in turn leaving them feeling alone, isolated and lost. Because ABI is an invisible disability, it is concealable, meaning that a person can choose how much information relating to their injury they want to disclose to others. The anxiety about the anticipated stigmatizing reactions of others to the ABI (as discussed in the previous paragraph) may lead some to hide or avoid sharing information about their injury (6). This has several negative effects on an individual’s social functioning. It may weaken their support group and relationships with friends and family as the disclosure of personal information is essential to establishing and maintaining close relationships and personal connections with others (6). As well, information about an ABI needs to be shared in order to access practical support and resources, whether that be in the form of a supported and empathetic conversation with a loved one or therapy and rehabilitation services (6). These barriers to sharing personal information can also have negative social consequences. There is evidence of the correlation between being anxious or hesitant about disclosing an ABI and social anxiety, social avoidance, loneliness, lower self-esteem, and reduced community activity (1,5). This anticipated stigma is just as detrimental to a person’s quality of life as the direct stigma. 

Feeling Embarrassed about ABI (internalized stigma)

An individual with an ABI may feel self-conscious or even embarrassed about their injury if they believe that the negative stereotypes/connotation around their injury apply to themselves. There is much research which shows how internalized stigma can be corrosive to a person’s self-esteem and self-worth (7). As well, studies have shown a relationship between internalized stigma and increased psychological distress (5). 

Moving Forward, Overcoming Stigma

Treatment is essential to bringing relief and reducing symptoms that interfere with a normal life. Besides treatment, there are other steps that individuals and groups can take to overcome stigma. 

Survivors may want to consider overcoming self-stigma by joining support groups. Brain injury support groups can be empowering, and are useful for discovering new resources for healthcare needs (8). As well, support groups provide an opportunity for expressing internalized stigma and related feelings while connecting with those who understand and share in the experience (8). 

Organizations and communities can take action against direct and anticipated stigma by encouraging more awareness about brain injury (3). The goal of raising awareness is to share information about a cause to influence people’s attitudes, to ultimately increase support for that cause. By partnering with local brain injury associations (like BIAPH), companies can educate people and engage them to participate in bringing change. As well, introducing accommodations in the workplace/school for survivors of brain injury is a way to promote equity, and make sure survivors receive opportunities to take part in everyday activities (3). Accommodations can include anything from allowing employees to record meetings to accommodate their memory deficits, to installing ramps and handrails to accommodate physical limitations.  

References

1. Hagger BF, Riley GA. The social consequences of stigma-related self-concealment after acquired brain injury. Neuropsychol Rehabil. 2019 Aug 9;29(7):1129–48. 
2. Ralph A, Derbyshire C. Survivors of brain injury through the eyes of the public: a systematic review. Brain Inj [Internet]. 2013 [cited 2022 Sep 10];27(13–14):1475–91. Available from: https://pubmed.ncbi.nlm.nih.gov/24215644/
3. van Laar C, Meeussen L, Veldman J, van Grootel S, Sterk N, Jacobs C. Coping with stigma in the workplace: understanding the role of threat regulation, supportive factors, and potential hidden costs. Front Psychol. 2019;10(AUG):1879. 
4. Phelan SM, Griffin JM, Hellerstedt WL, Sayer NA, Jensen AC, Burgess DJ, et al. Perceived stigma, strain, and mental health among caregivers of veterans with traumatic brain injury. Disabil Health J [Internet]. 2011 Jul [cited 2022 Sep 10];4(3):177–84. Available from: https://pubmed.ncbi.nlm.nih.gov/21723524/
5. Curvis W, Simpson J, Hampson N. Social anxiety following traumatic brain injury: an exploration of associated factors. Neuropsychol Rehabil. 2018 May 19;28(4):527–47. 
6. Quinn DM, Earnshaw VA. Concealable Stigmatized Identities and Psychological Well-Being. Soc Personal Psychol Compass [Internet]. 2013 Jan [cited 2022 Sep 10];7(1):40. Available from: /pmc/articles/PMC3664915/
7. Curvis W, Simpson J, Hampson N. Factors associated with self-esteem following acquired brain injury in adults: A systematic review. Neuropsychol Rehabil. 2018 Jan 2;28(1):142–83. 
8. Salas CE, Casassus M, Rowlands L, Pimm S, Flanagan DAJ. “Relating through sameness”: a qualitative study of friendship and social isolation in chronic traumatic brain injury. Neuropsychol Rehabil. 2018 Oct 3;28(7):1161–78.