In this blog series, we have delved into the epidemic of loneliness, specifically examining its unique impact on individuals who have endured a brain injury or stroke. Of particular significance is our exploration of the study conducted by Lowe et al. (2021), which focuses on the INTERNAL experience of loneliness and identifies five themes that encapsulate the various facets of loneliness in survivors of brain injury.

In Blog #3, we examined the first three themes:

1. “Shattered to pieces”: loneliness in trauma, identity confusion, grief & and anger.
2. “Left behind”: loneliness in the world continuing without you.
3. “Wishing for an open wound:” loneliness in invisibility.

We will now continue to delve into the last two themes:

4. “Papering over the cracks”: loneliness in concealment.
5. “Rejecting parts of self”: loneliness in internalized stigma and rejection of part of self.

4. PAPERING OVER THE CRACKS

Participants described viewing their identity as flawed, ‘cracked’, or ‘broken’ following their brain injury and therefore feeling a need to disguise it or conceal it from others. They described feeling pressure to conceal or cover up their perceived deficits, even within intimate relationships. This process of ‘WEARING A MASK’ for other people creates a barrier to authentic connection and interaction with others. In turn, this inability to ‘be yourself’ fully within any interaction was connected to their feelings of loneliness and isolation. There is a strong sense that if another person saw the extent of their flaws or deficits that they may be rejected.

Ken (male, 47 years, 18 months post-stroke) I’m embarrassed with friends so I’m trying to still be the funny man…cracking jokes, still trying to banter but I feel so far away from that…but I don’t want people to see me, the real me.

5. REJECTING PARTS OF SELF

Lack of awareness and stigma of brain injury, within wider society, played a significant role in participants’ feelings of being rejected by others.

Deirdre (female, 63 years, 6 years post-brain hemorrhage). some people are afraid of brain injury, they don’t understand it, and I think when I said there’s stigma around mental health and there’s also a stigma around brain injury, I think people see them as something, one and the same, they’re both unpredictable and both the brain.

These experiences of perceived rejection may contribute to one’s attempt to ‘paper over the cracks’ or hide their flaws and deficits from others. Stigma towards brain injury within society may lead to the development of internalized stigma within individuals living with brain injury. Just as they fear that others may reject them if the brain-injured part of themselves is visible, they in turn may reject that part of themselves.

Some participants described that they were/ are striving to get back to their pre-injury identity, therefore not acknowledging the brain-injured part of themselves, nor associating with the brain injury community. The experience of rejecting part of themselves and rejecting the community appears to contribute to a sense of internalized loneliness.

Also described here is an internal rejection of unrecognizable parts of self, most notably the experience of unregulated anger. Participants described these dysregulated internal or external expressions of anger as ‘demons’ or ‘something horrible lurking within’. Ian described his thought process surrounding his dysregulated anger and how the rejection of part of himself as ‘evil’ led to intense and consuming self-hatred.

Ian (male, 45, 5 years post-car accident). there’s no escape from that no … you certainly wouldn’t want any mirrors in the room, you couldn’t look at oneself in the mirror … that sort of self-loathing.

Each of the five themes discussed significantly contributes to a brain injury survivor’s sense of disconnection from both themselves and others, resulting in a profound feeling of loneliness. The participants in the study and their comments highlighted how each brain injury is different, showing that each person’s journey and experience is unique. However, the study goes on to stress that a trained mental health professional can facilitate the healing process by not only respecting the individuality of each survivor’s journey but also having the knowledge of the common themes that exist regarding loneliness following brain injury.

In the upcoming blog post, we’ll explore two essential themes that emerged during the healing process facilitated by mental health therapy:

1. Healing the Cracks & 2. Visible with Cracks

Our discussion will touch on various therapy methods, such as processing emotions, recognizing the importance of the pre-and post-injury self as acceptable, mindfulness, and developing dialectical thinking.

I will also highlight how important it is that after a brain injury, the path from feeling broken and experiencing loneliness often involves the healing influence of a therapeutic relationship with a mental health professional who specializes in brain injury and stroke.

I will also share more direct experiences from our clinical team, at Colorado Brain Injury Therapy, in providing insights into their specialized understanding and expertise in addressing the unique issues of loneliness associated with stroke and brain injury caregiving. Stay tuned and please join us for a closer look at 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/1248