“We’re just like you”: Healthcare, social stigma, and COVID-19 through the eyes of an individual with traumatic brain injury
By Rachael Han, Tanisha Martheswaran, Madelyn Mauro, and Laura Tsai
At age 17, a few weeks into her senior year of high school, Amanda Smart was driving home from soccer practice one typical afternoon when she ran a stop sign. She did not see the truck speeding from the other side of the intersection—until it collided with her car.
She woke up in the hospital two months later, confused and unable to recall prior memories: “For me, I had gone to bed the night before as a junior… and then I woke up the next morning in the hospital. That’s what it seemed like to me.” Even some of the concerned faces at the foot of her bed were unrecognizable to her. “I had no idea who my boyfriend was… I knew him as a friend, but I had no idea I was dating him.” Only the pictures and cards surrounding her hospital bed put together a hazy picture of the months before and after the crash. Explaining the reason for her memory loss, Amanda’s doctor informed her that she had sustained a traumatic brain injury (TBI) from the car accident (Amanda Smart, personal communication, October 25, 2020).
Amanda, now 42 years old, represents one of over 55.5 million individuals with TBIs worldwide (ASHA). However, she concedes that her experience with TBI — namely her positive outcomes from therapy, supportive school programs, and a close relationship with her neurologist — is “probably completely different than other people’s.”
Traumatic brain injuries (TBIs) — which can be defined as forceful blows, injuries, or bumps to the head that lead to long-term changes in behavior and cognitive capabilities — represent a common but often misunderstood source of mortality and lifelong disability.
Perhaps one of the most jarring aspects of TBIs is the fact that they can happen to anyone, as some of the leading causes of TBIs include falls, car accidents, and sports-related injuries. However, the resulting brain injury differs in severity for every person. Some TBIs can be fatal: an average of 155 people died each day in 2014 from sustaining a severe TBI (CDC, 2019). However, an increasing number of individuals with TBIs face lifelong repercussions of their brain injuries, including impaired memory, weakened sensation and movement abilities, and permanently altered day-to-day functioning with regard to social interaction, attention, and stigmatization (NIH, 2020).
Because no cure exists for TBIs, recent research has been geared towards the identification of druggable targets and addressing the inhibitory factors that cause post-TBI neurodegeneration in the mammalian brain, combating chemical stress to glial cells, and developing stem cell therapies to replace lost neurons. Furthermore, efforts have been made to overcome the physiological barriers against controlled drug delivery for patients with traumatic brain injury through the development of more effective drug deliverables, including nanocarriers, osmotic pumps, and cell-penetrating peptides (Ng et al, 2019).
Yet despite the promising advances in research, many individuals with TBIs in the United States currently face a healthcare system that falls short in providing the adequate care and support needed throughout the recovery for a brain injury. Individuals with TBI often report, for example, that the healthcare providers they’ve interacted with have been insufficiently aware of brain injury-specific symptoms, a phenomenon that often leads to misdiagnosis, delay in proper treatment, and the erosion of healthy communication between the individual and their care team (Dams-O’Connor et al, 2018).
Amanda acknowledges that she was fortunate to be paired with doctors and specialists who prioritized communication with her throughout her recovery. “I was never in the situation where people didn’t believe me [about my symptoms],” she says. In fact, Amanda continues even today to regularly see the neurologist who guided her through the first months of her injury. “[Dr. Katz] is kind of like someone I can confide in, can talk to about anything, and I wish everybody could have as good of an experience as I had. I’ve been to school with people with TBI and in support groups, and some of those other individuals have definitely experienced [miscommunication from their care providers].”
The prevalence of such miscommunication, however, is unfortunately not the only barrier to navigating the healthcare system faced by individuals with TBIs. Although receiving specialist care is often invaluable to the treatment regimen for TBI, cognitive symptoms typical of TBIs—such as memory impairment and diminished locomotive ability—can make scheduling and accessing regular medical appointments difficult. While some specialist offices have adopted accommodations such as lengthened appointment times to allow for individuals with TBIs to establish a regular communication and reminder plan with their provider, such examples are sparse, leaving most individuals with TBIs to face this obstacle on their own (Dams-O’Connor et al, 2018).
Therefore, organizations that provide accessible resources and, in particular, social support for individuals with TBIs and their caregivers play a critical role in rehabilitation. For instance, the student-run organization Harvard Synapse aims to serve this mission through student-led peer support groups and social events to foster personal connections among the TBI community. “The beautiful thing about TBI peer support groups is that people with different TBIs already have this innate understanding and they have this space to feel accepted and encouraged by others,” says Michaela Benedict, a student peer support group director.
But the onset of the COVID-19 pandemic nearly upended the foundation of these organizations, which rely on in-person gatherings for socialization. In an attempt to curb the social isolation, student leaders of Harvard Synapse quickly adopted the virtual platform Zoom to continue their support of the brain injury community. In fact, virtual events, such as Zoom peer support groups, have increased access for those with mobility issues and reduced geographical barriers, allowing individuals with TBIs to call in from anywhere in the country. The option to turn off one’s video or access the meeting by phone has also helped those facing social anxiety, enabling them to participate on their own terms, with comfort and flexibility.
Amanda describes these virtual support groups as an important means for connection especially during these times of hardship and stagnation. “I know that not everybody is continuing to go to work or continuing to be out in everyday life and everything, so this [virtual peer support group] is definitely a huge connection. It’s much appreciated.” Even today, she keeps in touch with student buddies and individuals with TBIs whom she has met through various brain injury advocacy organizations over the years. To Amanda, these relationships have been constant sources of encouragement, inspiring her to advocate for others with TBIs in her community. Since sustaining her TBI, Amanda has run for Boston City Council and worked for the Brain Injury Association of Massachusetts. “I don’t think that anybody should feel hindered from doing something because they have a brain injury,” she says.
Amanda hopes that through community education, more individuals will not only become aware of the obstacles that individuals with TBI have to overcome, but more importantly, also recognize the similarities that we all share—in the hopes that societal stigmas will be broken, differences will be embraced, and empathy will be extended towards those with brain injury. “I know that sometimes people are scared if someone’s a little a bit different. There might be a time
that we walk differently, talk differently, or just keep our heads down because it helps our vision. We may not look exactly like everybody else, but on the inside, we’re the same.”
With current research aiming to discover a long-awaited cure for traumatic brain injury, coupled with the healthcare inequities that often face the millions of patients with TBI and their caregivers, community support has played an essential role in not only alleviating the physical and emotional burdens that arise from battling a lifelong condition, but also in providing sources of motivation and camaraderie that prove especially meaningful in times in isolation, such as that of our current climate.
About the Authors
Rachael Han is a recent graduate of Harvard College (Class of 2020). She concentrated in Neuroscience.
Tanisha Martheswaran is a junior at Harvard College concentrating in Human Developmental and Regenerative Biology.
Madelyn Mauro is a sophomore at Harvard College concentrating in Human Developmental and Regenerative Biology.
Laura Tsai is a junior at Harvard College concentrating in History and Science.
References
American Speech-Language-Hearing Association. (n.d.). Traumatic Brain Injury in Adults. Retrieved 20 October, 2020, from https://www.asha.org/PRPSpecificTopic.aspx?folderid=8589935337§ion=Incidence_and_Prevalence#:~:text=According%20to%20the%20National%20Center,population%20(CDC%2C%202015)
Brain Injury Alliance Connecticut. (n.d.). Brain Injury Facts and Statistics. Retrieved 10 October, 2020, from http://www.biact.org/understanding-brain-injury/brain-injury-facts-statistics
Centers for Disease Control and Prevention. (2019). TBI: Get the Facts. https://www.cdc.gov/traumaticbraininjury/get_the_facts.html
Dams-O’Connor, K., Landau, A., Hoffman, J., & St De Lore, J. (2018) Patient perspectives on quality and access to healthcare after brain injury, Brain Injury, 32:4, 431-441. https://doi.org/10.1080/02699052.2018.1429024
National Institute of Neurological Disorders and Strokes. (2020). Traumatic Brain Injury: Hope Through Research. NIH https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Hope-Through-Research/Traumatic-Brain-Injury-Hope-Through#whatis
Ng, S. Y., & Lee, A. (2019). Traumatic Brain Injuries: Pathophysiology and Potential Therapeutic Targets. Frontiers in cellular neuroscience, 13, 528. https://doi.org/10.3389/fncel.2019.00528
Smart, A. (2020, Oct. 25). Personal interview [personal video interview].
