Understanding Loneliness After a Stroke: Beyond Social Isolation
We first met Lucia Valdez, a psychotherapist specializing in the care of people with brain injuries, in 2022 when she spoke at a Stroke Across America community event. Since then, she’s continued to be engaged in Stroke Onward’s work. We invited her to share her perspectives on loneliness after a stroke.
Lucia has over 20 years of experience working with brain injury and stroke survivors across the continuum of care. Her journey into brain injury therapy began with a deeply personal experience — a family member’s traumatic brain injury — which inspired her to dedicate her career to supporting survivors. Lucia has observed that the most challenging time for brain injury and stroke survivors often comes after they complete traditional therapy and attempt to reintegrate into their former lives. She recognized a critical gap in rehabilitation where behavioral and mental health needs are often overlooked or inadequately addressed due to limited resources.
To address this gap, Lucia founded Colorado Brain Injury Therapy, a private practice dedicated to meeting the unique mental health needs of people after a brain injury or stroke. Her work emphasizes helping survivors rebuild a new sense of self and create a life that, while different from before, can still be meaningful and fulfilling. Lucia’s commitment to this cause is driven by her passion for providing comprehensive and empathetic care to those navigating the complex recovery journey.
Recovery after a stroke is often framed in terms of physical rehabilitation and cognitive improvement. However, a crucial aspect often overlooked is the profound social challenges that stroke survivors face when they return home and attempt to resume their previous lives. For many, the most significant and enduring difficulties are maintaining or developing social connections and meaningful relationships. While much attention is given to expanding social circles and building new networks, the internal experience of social isolation is often ignored, primarily because professionals and family members don’t fully understand it.
The Internal Experience of Loneliness
There is a vital difference between simply feeling lonely and experiencing loneliness as an internal process. Stroke survivors often describe feeling lonely even in a crowd, within their intimate relationships, and experiencing a deep sense of separation from themselves. This internal loneliness, which extends beyond the mere physical presence of others, highlights a profound disconnect that many stroke survivors endure.
A study by Lowe et al. (2020) delves into this experience of loneliness through qualitative analysis, identifying common themes that describe the internal process of loneliness and the journey toward healing:
- “Shattered to pieces”: Loneliness in trauma, identity confusion, grief and anger
Stroke survivors often use intense language such as “smashed,” “broke,” and “shattered” to describe their experiences. These words reflect the significant trauma and anger tied to their stroke. The stroke often leaves survivors with unprocessed emotions, which manifest as anger directed at themselves, others close to them or the perceived injustice of the world. They also experience identity confusion, feeling “broken inside” as they struggle to make sense of their trauma and the changes it brings. This confusion and isolation contribute to a profound sense of loneliness.
- “Left behind”: Loneliness in the world continuing without you
Many stroke survivors speak about the loneliness that comes with realizing that life goes on without them. They describe a physical and cognitive slowness that makes it difficult to keep up with the pace of life, leaving them feeling fatigued and disconnected. Survivors often feel as if their brains are functioning at “half power,” making it hard to maintain relationships and keep up with friends. The emotional aspect of being left behind is equally challenging as they watch their peers and partners move on with their lives while they feel stuck. This sense of being left behind deepens their loneliness.
- “Rejecting parts of self”: Loneliness in internalized stigma and rejection of self
Stroke survivors often grapple with internalized stigma, rejecting parts of themselves that they associate with their stroke. This rejection contributes to their loneliness as they struggle with accepting their new identity and the changes that have come with their stroke.
The Role of Psychotherapy in Healing
These internal feelings of loneliness are particularly challenging because stroke survivors are often not given the space to express them, nor do they feel that their friends or family can understand. This leaves survivors with two options: to try harder or to bury these feelings, both of which can lead to getting stuck in their emotional recovery.
Healing, however, is possible, and it is so important for survivors to understand that they are not alone. Through psychotherapy, survivors can begin to integrate and reconnect with themselves, developing self-compassion and a degree of acceptance. This acceptance doesn’t mean resignation. Rather, it allows for healing while still acknowledging the changes and challenges that come with a stroke.
Psychotherapy plays a critical role in helping stroke survivors process the loss of their pre-stroke self, in constructing a new sense of identity, and can be empowering in that they have a choice in who they want to be now. Emotional adjustment is the foundation of rehabilitation, and those who can talk about the internal aspects of their stroke and are given the tools to bridge the gap between their pre-stroke and post-stroke selves report significant improvements in their overall recovery.
A stroke is an invisible injury but one that carries heavy internal burdens for the survivor. As professionals continue to work with stroke survivors, it is crucial to understand how lonely this experience can be and to provide the tools and resources needed for greater connection and healing. It’s important to normalize the feelings of disconnection from self and others and recognize that mental health is just as, if not more, important to address than the cognitive or physical challenges that come with a stroke.
When a stroke survivor is ready to work on their emotional recovery, it’s essential to find a therapist who understands the nuances of stroke and the internal process at play and who is trained to help the survivor build a bridge between their pre-stroke and post-stroke selves. This bridge, though it may have imperfections, is vital for moving forward with a sense of self that is both authentic and whole. Unfortunately, it can be difficult to find a therapist who specializes in stroke recovery, especially given the challenges of provider availability, cost and variable insurance coverage. A good place to start the search for a therapist is via Psychology Today or the Brain Injury Association of America. With new regulations allowing for telehealth, consider broadening your search to include therapists outside of your immediate town or state. Stroke-specific support groups can help with emotional recovery, too, and may be located through the American Association’s support group finder tool.
Stroke survivor Debra Meyerson and Steve Zuckerman, her husband and “carepartner” after stroke, founded the nonprofit Stroke Onward to help survivors, families and caregivers navigate the emotional journey to rebuild their identities and rewarding lives. As guest writers, they share their experiences and insights in their post-stroke journey.
