The Invisible Injury
Recovering from a concussion can be an isolating experience, and symptoms persisting over time can add to the sense of isolation. While persisting symptoms after a concussion present many difficulties for those who experience them, there are no visible, external signs—such as a cut, cast, or bruise—to indicate that these individuals have been injured. For this reason, concussions are often referred to as “an invisible injury.” This page explores how the invisibility of concussions and persisting symptoms can adversely affect the recovery process.
Contents
Why do individuals with persisting symptoms feel alone?
Those with persisting symptoms often feel alone in their struggle for several reasons, including the external invisibility of their injury, inadequate care from physicians, and a lack of understanding among their support system. The sections below explore these reasons in more detail.
What defines persisting symptoms after a concussion?
“The term ‘persisting symptoms’ is used for symptoms that persist >4 weeks across children, adolescents and adults.” (From the 6th consensus statement on concussion in sport.)
How common are persisting symptoms after a concussion?
A 2022 study of concussion patients found that “50% reported three or more symptoms at a year after their injury, and >70% reported at least one problematic symptom.” A 2018 study estimated that between 11.4% and 38.7% of people with concussions will develop postconcussion syndrome.
While the term post-concussion syndrome (PCS) was formerly common, the latest guidelines use the term persisting symptoms after concussion.
On the Outside, They look Healthy
In several studies that examined the experiences of athletes with persisting symptoms, athletes consistently reported feeling as though their concussion was invisible. As one athlete described it, “With concussion you got no signs at all; you look as normal as everyone else.” As a result, many athletes felt that nobody understood what they were going through. One athlete even described how a teammate blatantly invalidated his PPCS by saying, “I bet you’re fine; you’re just a big baby that you can’t handle this.” These types of encounters led individuals to feel isolated, which only further worsened their symptoms.
Two Concussion Alliance community members who have dealt with PPCS also expressed feeling isolated by the fact that on the outside, they looked fine. Consequently, they described feeling awkward in instances where they had to advocate for themselves—for example, asking for extended time on a test—due to concerns that their teachers or professors wouldn’t fully understand what they were dealing with. All in all, feelings of isolation had a large impact on both individuals, as they each dealt with symptoms of anxiety and depression following their concussions.
Inadequate Care from Physicians
Many individuals who seek medical care after a concussion have a difficult time finding physicians who can give them accurate recommendations for treatment. For instance, one study found that the severity of concussion patients’ injuries is often downplayed. Below are examples of dismissive information that doctors provided patients:
“...You’ll be better. It’ll be fine. It’s all good.”
“Just go home, rest, do not push yourself.”
“Your CAT scans are normal.”
“Give it a month.”
The above examples demonstrate how medical providers can fail to acknowledge the possibility that their patients may experience persisting symptoms after a concussion. When a lack of adequate information is provided to concussion patients and their support system, it sets the stage for patients to feel invalidated by those around them when they experience persisting symptoms. Indeed, another study that examined hockey players with persisting symptoms after a concussion found that players experienced frustration when healthcare providers assured them that symptoms would improve in the short term.
In this video, Nazeeg describes her struggle to find effective treatment for her concussion.
Evidence of inadequate care is not limited to the recognition of persisting symptoms after a concussion, but also the recognition of concussions in the first place. In a study that examined concussion evaluations in the 2018 World Cup, researchers found that FIFA’s concussion evaluation protocol was not followed in 63% of potential concussions.
Within the Concussion Alliance community, two of our members have experienced insufficient evaluations of their concussions. For one member, her headaches were initially misattributed to an electrolyte imbalance because her physician was skeptical that opening a door in her face could have caused a concussion. For the other member, his neurologist prescribed an MRI, which cannot detect a concussion. Since the MRI did not show any abnormalities, the neurologist thought that he was just in a “pain loop,” and prescribed medication. It took several years before this member finally met a physician who could accurately explain his symptoms.
Lack of Understanding among Support System
Within the U.S. population, there are many misconceptions surrounding concussions, as evidenced by data from a poll conducted by Dr. Michael Harris in 2015. Key findings from the poll are outlined below:
90% of respondents couldn’t define a concussion when given several choices.
Almost half of the respondents were unaware that not all concussions happen during contact sports activities.
About 70% of respondents were unaware that a concussion does not require a blow to the head.
About 70% of respondents did not know that there were treatments for a concussion.
Given that so many Americans lack sufficient knowledge about concussions, it is unsurprising that there is a lack of recognition for persisting symptoms after a concussion. Consequently, many concussion patients feel alone because those around them do not fully understand the difficulty of what they’re experiencing. As one of our Concussion Alliance community members described it: “The difference between the couple of people in my life who really get it and the people who are empathetic but don’t really understand is very stark.” In this member’s experience, he felt isolated in instances where people would ask him why he was being so cautious or opting to take a reduced course load in college. To him, it felt like a burden to have to explain himself to people who wouldn’t fully understand.
In addition, those with persisting symptoms often experience a sense that other people have a recovery date in their heads, and when their symptoms extend beyond that date, other people stop understanding or even caring. As Concussion Legacy Foundation described it: "While each person's recovery is unique, there is a common thread among patients. Often, those around them don't understand their suffering - even their closest friends and family."
Factors that prevent effective ereatment for persisting symptoms
On top of the numerous factors that cause concussion patients to feel invisible, there are additional elements that inhibit patients’ ability to overcome such feelings of invisibility including stigma surrounding mental health and inaccurate portrayals of concussions in television and the media. The sections below examine these elements in more detail.
The stigma surrounding mental health
Given that mental disorders such as anxiety and depression are common among those who experience persisting symptoms after concussion, it is crucial that these individuals receive appropriate treatment from a licensed psychologist. However, one study found that the stigma surrounding mental illness often prevents concussion patients from receiving the care they need. For example, one of the participants described how seeking mental health treatment was “taboo.” Another recounted how he “felt like a concussion was a silly thing to get counseling for.” In addition, none of the nine participants in the study were encouraged to seek mental health services following their concussion, suggesting that the stigma likely biased their providers’ treatment recommendations.
In addition to counseling, this stigma prevents people from accepting medication as a way to treat their mental health symptoms. In the experience of a Concussion Alliance community member who dealt with persisting symptoms, she resisted using an antidepressant because of the stigma associated with the medication. She wanted to get better on her own rather than relying on medication to overcome her symptoms. Eventually, she decided to take the antidepressant, and it provided relief from the headaches, depressed mood, and sleep problems that she was having. Although she was able to get past the stigma of taking antidepressants, many people remain reluctant to follow suit. While this stigma persists, psychogenic symptoms may continue to go unrecognized by many, consequently reinforcing concussion patients’ feelings of invisibility.
Inaccurate portrayals of concussions in television and the media
A study examining how concussions were represented in television from 1963-2018 found that numerous TV shows often portrayed concussions as minor incidents. For instance, in a Criminal Minds episode, one character described her concussion as “not a big deal.” Furthermore, those who sustained concussions in the TV episodes often recovered quickly with few to no side effects, and there was never a mention of potential long-term effects. Downplaying the severity of concussions on television may lead viewers to believe that concussions are not serious injuries. Since this is not the case, these types of portrayals reinforce the misinformation that is already prevalent in the U.S. population and, therefore, invalidate the experiences of those with persisting symptoms after concussion.
In addition to TV shows, other media sources often downplay the severity of concussions. For example, in a press release from August 6th, 2020, ESPN reported that despite having sustained five known concussions in his NFL career, Texans’ wide receiver Brandin Cooks is “not worried at all” about his concussion history and plans to return to play this fall. Texans’ coach Bill O’Brien, who claimed to have spoken to doctors about Cooks’ concussions, also expressed that he “feel[s] really good” about Cooks’ health. Media such as this reinforces the misconception that sustaining multiple concussions is not a big deal, which in turn masks the prevalence and severity of persisting symptoms after concussion.
How can we make concussion patients feel more visible?
Since those who struggle with persisting symptoms after concussion often feel isolated, it is crucial that these individuals, as well as their broader support system, become aware of ways in which they can combat such feelings. Below, we’ve outlined areas to focus on in the effort to reduce feelings of isolation.
Empathy and validation
A study examining the experiences of athletes with persisting symptoms after concussion found that among their support system, friends distanced themselves, teachers and peers expressed skepticism about the legitimacy of the injury, and they felt that there was a general lack of empathy regarding their symptoms. Each of these behaviors ultimately enhanced the athletes’ feelings of invisibility. The athletes emphasized that more empathy and validation from their support system would have lessened these feelings and made the recovery process easier. Indeed, another study has demonstrated that concussion patients who felt validated by those around them were able to better cope with their symptoms.
Social contact
In a study of college athletes’ experiences with persisting symptoms, the researchers emphasized that it’s important for those who live and work with a concussion patient to maintain social contact and be supportive during the recovery process. These individuals should strive to reach out to the concussion patient as often as possible and be supportive listeners during these interactions. Similarly, a member of the Concussion Alliance community who has dealt with persisting symptoms emphasized the importance of social contact and recommended that concussion patients spend time with people who are willing to “meet you where you are” when it comes to energy levels and ability to participate in activities.
In addition to external validation, internal validation is also important. This point has been emphasized by members of the Concussion Alliance community who have dealt with persisting symptoms. In one member’s experience, despite having symptoms that were disabling, he often struggled to accept that those symptoms were, in fact, disabling. In addressing others with persisting symptoms after concussion, he stressed the importance of recognizing your limitations so that you can feel more confident advocating for yourself when you need to. As another member put it, “Admitting to yourself that you need help isn’t a show of weakness, but strength.”
In this radio news story, Daisy recounts the social isolation she experienced after her concussion.
Education
In a study of college athletes’ experiences with persisting symptoms after concussion, the researchers recommended that educational training be provided to teachers in order to enhance their awareness of persisting symptoms. This same education is useful for all members of a concussion patient’s support system, as it improves the ability to empathize with and understand what a concussion patient may be experiencing. When the experiences of individuals with persisting symptoms are better understood, it lessens their burden of having to explain themselves to others and makes it easier for them to advocate for themselves in situations where they may need accommodations.
Acceptance
Two of our Concussion Alliance community members who have dealt with persisting symptoms noted that oftentimes, it’s easy to fall into the trap of envisioning your pre-concussion self as your fully recovered self. In their experiences, pursuing this as your target for recovery is unrealistic. In order to effectively approach recovery, they recommended that those with persisting symptoms need to accept that progress may not look exactly how they envisioned it. Per their advice, approaching recovery with segmented goals is a healthier mindset to adopt.
Additional resources
The Concussion Legacy Foundation has a very useful page on coping with PCS.
The Concussion Legacy Foundation’s personal stories page provides numerous testimonials from those who have struggled to recover following their concussion. Concussion patients may find that these stories help validate their experiences and remind them that they’re not alone.
Seeking psychotherapy to address mental health-related persisting symptoms after a concussion can reduce feelings of isolation. See our page on Cognitive Behavioral Therapy—a type of psychotherapy—for more information on how to access this type of therapy.