In this blog series, we’ve been looking at how people with acquired brain injuries often feel lonely and lose social connections for a long time. This leads to ongoing experiences of feeling alone and socially isolated.
We’ve been discussing a study by Lowe et al. (2021), where 11 survivors of brain injuries were interviewed to explore their internal feelings of loneliness. The study identified five themes that capture different aspects of loneliness. Keep reading as we dive into these themes and uncover the emotions experienced by individuals dealing with life after a brain injury.
- “Shattered to pieces”: loneliness in trauma, identity confusion, grief & and anger.
- “Left behind”: loneliness in the world continuing without you.
- “Wishing for an open wound:” loneliness in invisibility.
- “Papering over the cracks”: loneliness in concealment.
- “Rejecting parts of self”: loneliness in internalized stigma and rejection of part of self.
Each of these areas contributes to the development of participants’ feelings of loneliness and we will start by examining the first three themes more closely.
1. SHATTERED TO PIECES
Each of the participants described trauma in their accounts of their injury. They used violent verbs in their description of how their brain injury affected them: ‘smashed’, ‘broke’, ‘shattered’, and ‘your core, your confidence is ripped away’. It was clear from descriptions of their brain injury that there is significant trauma and anger attached to their experience.
Unprocessed emotions often exist after an individual sustains a brain injury, and unprocessed emotions are experienced as anger directed at self, close others, or at the injustice of the world.
There was also a collective feeling of being ‘broken inside’. Participants spoke about confusion around their identity post-injury, not only are they dealing with the trauma of the injury, but they also describe feeling alone in making sense of that trauma and subsequent identity confusion. Participants speak to subjective emotional loneliness in these descriptions of their sense of aloneness. They may be surrounded by friends and family but feel cut off/ disconnected from others. They outlined a need to ‘get to know’ or ‘meet’ their new selves. There is a description of grief, mourning, loss, and death within the accounts of their coming to terms with their changed identity.
Cian (male, 52 years, 2.5 years post-stroke). I really felt about it was that it’s like a death, while no one has died I appreciate, but the old you is gone, you’re going through a grieving process whether you know it or not, but grieving alone
Within this period of mourning the loss of the old self and struggling to acknowledge the new post-injury self, participants consistently speak of comparing themselves to the positive strengths and abilities of their pre-injury self. This leads to distress, sadness, frustration, and hopelessness. There appears to be some idealization of the old self at this time, with a focus exclusively on the positive traits of their old self; ‘I was so determined and hardworking’, ‘nothing was too much for me’, and focusing only on what they have lost.
The challenges discussed above arise from the trauma of brain injury. Internally, individuals grapple with unprocessed emotions like anger and sadness, mourning their old selves, navigating identity confusion, and constantly comparing themselves to who they used to be. These struggles are hidden from others, leaving individuals to face the trauma alone.
2.LEFT BEHIND
Participants spoke about loneliness in the realization that life goes on without you.
Liam (male 34 years, 8 years post-car accident). “Nobody wants to be left behind and if you feel you’ve been left behind, that’s lonely you know, waiting at the bus stop and the bus never came or it came and never stopped for you”
“Left behind” refers to a sense of being both developmentally and physically left behind. Being developmentally left behind became apparent as individuals realized that their peers were continuing with their lives on the normal developmental trajectory, for example in younger cohorts moving out of home or developing romantic relationships. This realization then highlighted their sense of stagnation:
Eugene (male, 27 years, 5 years post-brain tumor). “I suppose when you’re going nowhere, and all my friends were with girlfriends or whatever and after moving into houses or whatever and I guess it makes you notice how things are for you then.”
Participants also spoke about the physical element of being left behind. They describe that they cannot keep up with the pace of life anymore. They describe themselves as cognitively and physically slower post-injury and are struggling with fatigue. They outline that they cannot operate at the same speed as before: ‘your brain is functioning like a brain on half power’, not being able to ‘keep up with friends’, and feeling like they are ‘holding friends back’.
There is a reality to their experiences in that peers were not able to make appropriate accommodations for their new selves, but it is in the internal experiencing of this that the pain of being left behind arises.
3. WISHING FOR AN OPEN WOUND
The majority of the participants did not have visible signs of an injury and even for the participants in wheelchairs, they described that the cognitive and emotional consequences of their injuries were invisible. Most viewed this as the hardest element of living with their injury as it contributed.
Marion (female, 50 years, 5 years post-brain cyst).” but what was really hard was for anyone because unless they knew me, on the outside I looked perfect, and they just couldn’t get it and that was the most frightening part for me, I just felt like people thought I was putting it on. “
Brain injury was described as a” hidden disability.’ At times, participants spoke about wishing for a visible or understood condition: ‘cancer’, a ‘broken bone’, or an ‘open wound’
Participants stated that with a more visible condition, they felt they would be treated with sensitivity and patience. They described the opposite of this in their experiences with loved ones and with wider society. For Marion, she described that people see her as ‘hiding behind her illness’. This sense that their trauma and ‘broken’ or ‘shattered’ selves are not being fully seen or acknowledged by others created a barrier to authentic connection even in intimate relationships. This lack of understanding and lack of connection was experienced as another aspect of loneliness.
Cian (male, 52 years, 2.5 years post-stroke).” I can see that they … em …see me as the person I was and how can you tell someone that you love very much that I’m not actually that person.”
As you can see, the interaction between the external world and how it treated the participants and their internal states; loneliness was made worse.
Join me for the upcoming blog post as we delve deeper into the last two themes of internal loneliness in brain injury. We will then transition into exploring how participials describe the healing process of psychotherapy, illustrating how individuals can connect with a new sense of self, foster the development of self-compassion, and attain a degree of acceptance. Two key themes of the healing process that will be highlighted are:
- Healing the Cracks
- Being Visible with Cracks
I will also share more direct experiences from our clinical team, highlighting their specialized understanding and expertise in addressing the unique issues of loneliness associated with stroke and brain injury caregiving. Stay tuned for insights into the transformative journey of healing and acceptance.
REFERENCE
Lowe, N., Crawley, L., Wilson, C., Waldron, B., & Litt, M. (2021). ‘Lonely in my head’: The experiences of loneliness in individuals with brain injury. The British Psychological Society, 26, 444-463. https://doi.org/10.1111/bjhp/12481
