Author: Sean Nguyen, MS3 at University of Missouri – Kansas City School of Medicine
The journey to recovery for people with traumatic brain injuries (TBIs) is not always a straightforward path. New impairments can affect patients’ cognitive and emotional spheres, generating unique experiences ranging from periods of despair to intermittent seasons of hope. This blog post will reflect on these challenges and emphasize the valuable lessons and insights disabled and non-disabled people can learn from as those impacted by TBI share their experiences. Understanding the complexities and nuances of their challenges can foster deeper empathy, humility, and support within our communities and clinics.
Understanding Emotional Challenges
When we engage with individuals who have experienced TBIs, we experience a shared human connection that reaches far beyond merely feeling inspired by their stories. The impacts of a TBI can appear across aspects of an individual’s day-to-day life, often affecting their entire support system as their friends, loved ones, and caregivers learn to adapt their approaches as needed. The emotional toll may resonate deeply with family members and friends, leading to challenges such as caretaker burnout, difficulties in the workplace, and strained relationships. The ripple effect of TBI on social and emotional well-being highlights the importance of including the entire support network – or building one – in the rehabilitation journey. By fostering open communication about needs and expectations among all involved, we can collectively process emotions, share experiences, and learn from one another. This collaborative approach not only aids in the healing journey but also strengthens bonds, maximizing the likelihood that everyone is supported and understood if those involved are willing to address the effects of systemic and internalized ableism on quality of life for people with TBIs.
A feeling of losing self-identity is common among post-injury individuals with TBIs, especially as they initially may have difficulty engaging in their usual routines. Obstacles to enjoying previous activities may stem from cognitive, motor, or sensory impairments that can take months to become clinically apparent. As those who experience TBI navigate their new realities, feelings of inadequacy or loss can surface. As medical providers and neighbors in the disability community, it is essential to express patience with newfound difficulties, demonstrate active listening, and create judgment-free emotional spaces for growth in and outside medical facilities. Recognizing, validating, and celebrating even small progress or effort can help reinforce one’s sense of achievement and encourage continued growth.
Cognitive impairments are also often present after a TBI. Patients may show impairments in memory, attention, or cognitive tempo. These impairments can mix with emotional dysregulation and cause feelings of anxiety, sadness, or agitation with adjustment to their new reality. These changes emphasize why it is important for healthcare providers and peers to practice empathizing with individuals who have experienced a TBI, reiterating that their feelings are valid. By creating a safe space for open emotional expression, physicians can encourage an environment where those who have experienced TBI feel supported and understood. This collaborative approach fosters connection and reinforces the idea that we are all navigating the journey to recovery together.
Courageous Journeys: Celebrating the Spirit of Hope
One’s journey post-TBI is filled with difficulties and may not reflect a completely linear path to recovery. With their approval, the following are stories of two patients I supported as a medical student rotator that highlight the resilience and flexibility of the human spirit.
One patient, referred to here as “Berto,” worked as an acclaimed artist before sustaining a TBI in a motor vehicle accident. Initially, Berto struggled to reconnect with his talent, feeling that he had lost his creative spark. Through a combination of physical therapy and art therapy, he slowly began to rediscover his love for drawing. The first piece he created post-rehabilitation depicted his journey – inscribed in pencil. This artwork celebrated his recovery and became a powerful symbol of hope for others.
Recovery is given meaning by big milestones, small victories, and sometimes just making it through another day. However, setbacks and disappointments are equally meaningful experiences in the process. Some obstacles may offer valuable lessons and insights that help develop resilience or coping strategies for distressing situations. Acknowledging these challenges and creating space in conversations for open-ended reflection allows patients and providers to navigate a new, sometimes uncharted emotional landscape more successfully.
A middle-aged woman, referred to here as “Joanne,” experienced memory impairments after her TBI. Joanne made small steps to recovery with diligent cognitive and physical therapy and began to find joy in the micro-victories of graduating from increasingly challenging therapy tasks. With gradual improvements, she began to remember minute details – her favorite songs, recipes, and even the names of family members. Each memory recovered felt monumental, reinforcing her strength and resilience. Her journey illustrates that progress, no matter how small, deserves celebration.
Serving patients who have experienced TBIs is a massively rewarding experience in medicine, but it can also be a particularly demanding experience that encourages refining and adapting one’s interpersonal skills to unique patient cognitive profiles. Caring for those with TBI is often complicated by medical instabilities as well as new social or emotional support requirements. Most importantly, those who provide medical care must remember that each person who has experienced a TBI is a fellow human undergoing an incredibly challenging experience. Prioritizing the dignity and autonomy of our peers in the disability community inherently leads to providing comprehensive care that addresses physical, emotional, and social needs.
What is Success, Anyway?
Success stories in TBI rehabilitation should further motivate physicians to maximize the quality of the care they provide. By focusing on human connections and celebrating every victory—big or small— physicians can create an environment that celebrates and improves upon flexibility, vulnerability, and resilience. Moments of triumph and inevitable challenges shape the journey of recovery and highlight the strengths of both patients and their support systems. Ultimately, those on the outside looking in on each journey should not reduce it to simply overcoming obstacles. Instead, one should magnify each journey to recovery by emphasizing the growth and connection gained by patients and their support systems as they move forward together. By recognizing that challenges are a natural element of success, providers foster an environment where all experiences are validated. This perspective not only supports healing but also ameliorates the inherent imbalance in the power dynamic between patients and their healthcare providers. Each story of rehabilitation reflects the resilience of the human spirit and highlights the importance of community in the healing process. By sharing these narratives, a supportive community can create a space for understanding, connection, and collective growth. Embracing broadened perspectives of these journeys—including the highs and lows—enables a more compassionate and holistic approach to improving the care people with TBIs receive.
