Let us review what we know about loneliness and brain injury. Loneliness is often described as a silent epidemic affecting individuals in modern society, with a unique impact on those who have experienced adversity such as traumatic brain injury. According to the International Brain Injury Association (IBIA), brain injury stands as a leading global cause of death and disability.

Individuals with acquired brain injuries consistently report social isolation and loss of social contact as their primary long-term concerns. Families of brain injury survivors also highlight psychosocial problems as significant worries. Research indicates a marked decline in the social networks of brain injury survivors’ post-injury, leading to chronic experiences of loneliness and social isolation. Specifically, individuals with brain injuries struggle with decreased close friendships, maintaining old connections, making new friends, and participating in social activities like dating, visiting family, and attending events.

Even five years post-injury, adults grapple with challenges in developing social contacts and maintaining significant relationships, impacting their mental health. The prevalence of depression tends to increase after the first-year post-injury. While external factors like changes in occupation and family roles contribute to loneliness, it is crucial to delve into the internal processes of individuals post-brain injury.

In understanding the internal experience of loneliness for those with brain injuries, we gain insights into the intricate struggles they face beyond external circumstances. Addressing the emotional and psychological aspects of loneliness becomes essential in providing holistic support to individuals navigating life after a brain injury.

Let us move to the study by Lowe. N. et al. (2020) who took 11 brain injury survivors and had them complete semi-structured interview questions which included the following:

  1. Have you experienced any feelings of loneliness since your brain injury?
  2. Can you tell me about any experiences of loneliness that you experienced?
  3. When did you first become aware of the experience of loneliness?
  4. Did your experience of loneliness change during your recovery/rehabilitation?

Lowe. N.  et al. (2020) completed a qualitative analysis, and FIVE themes were identified in describing the experience of loneliness and, more importantly, the healing process.

Although participants within the study mentioned reduced social circles and lack of access (e.g., public transport) as contributors to their experience of loneliness, most of the discussion on these subjects involved participants’ internal experiences. Participants described feeling lonely in a crowd, feeling lonely within their intimate relationships with friends and family, and feeling lonely in being cut off/separated from themselves, thus highlighting a sense of internal loneliness.

For example, Ken (male, 47 years, 18 months post-injury) said, “But even if I had a house full of people, I could still feel lonely, and they could all be engaging with you, but I just drift off, and really you’ve no idea what’s going on in my head.”

To understand themes of loneliness it is divided into five distinct but interrelated areas. The subthemes in quotation marks are direct quotations from participants:

1. “Shattered to pieces”: loneliness in trauma, identity confusion, grief & anger.  2. “Left behind”: loneliness in the world continuing without you. 3. “Wishing for an open wound:” loneliness in invisibility. 4. “Papering over the cracks”: loneliness in concealment. 5. “Rejecting parts of self”: loneliness in internalized stigma and rejection of part of self.

Each of these areas contributes to developing and perpetuating participants’ feelings of loneliness. Participants’ experiences varied significantly in terms of intensity, magnitude, duration, and timeline. They moved into and out of the experiences at different points through their varied journeys.

In the next blog, we will dissect and explore each theme to better understand how brain injury survivors experience and endure loneliness as an INTERNAL PROCESS.

Choosing the right place for help is crucial, and Colorado Brain Injury Therapy offers a compassionate and specialized approach. A trained mental health counselor can offer the necessary guidance and support to navigate the unique challenges associated with loneliness after a brain injury. It is an essential step towards holistic healing, addressing both the external and internal dimensions of the post-brain injury experience.