Barriers to recovery

Eighteen Experiences

Participants described a range of factors that acted as barriers to a positive recovery, including:

• a lack of knowledge and awareness of concussion (both from health and medical professionals, and among the general public), meaning that their needs were not readily identified or accommodated for,
• being advised that they should just "wait and see" (rather than engage in active treatment) and feeling that their optimal window for treatment had therefore been missed,
• alternatively, not being advised to gradually return to their prior activities and instead prematurely returning to (and struggling with) activities, including employment,
• being involved in legal and insurance processes, in which their individual circumstances and needs felt overlooked, and 
• feeling excluded and misunderstood by others.

Invisible Nature of Injury.

A lack of reliable diagnostic technology, coupled with the invisible nature of mTBI, places patients at risk of experiencing suspicion of their condition, much like any “unseen” injury or disease. The TBI professionals in this study reported that their patients often experience suspicion from family, friends, employers, and even medical professionals about the extent of their injury.

I think because mild traumatic brain injury individuals look completely normal, even their family and their friends say. “What’s wrong with them? Why cannot they do the things they didbefore?”

People will be told by their doctors, their spouses, their family, “It’s all in your head.”

They do not want to say anything because they might think that they’re kind of making it up.

The invisible nature of this injury is specifically difficult in employment settings. Participants shared multiple stories of patients who had experiences with employers and coworkers who were suspicious of their injuries.

They think that the person is being lazy, that the person’s not motivated, that they purposefully are not being productive.

A lot of times, I have patients who just muddle through because they’re afraid that they’ll lose their job, or their boss won’t understand.

Suspicion of invisible conditions, while not uncommon, is particularly challenging with an injury like mTBI that is so variable and unpredictable, even for medical professionals. The recent and multifaceted surge in advocacy and awareness raising in sports, media, and the military, however, promises to shift this trend, if slowly.

Impaired Self-Awareness.

It is not uncommon for survivors of mTBI to be unaware of their own symptoms or the extent of their own deficits [18, 19]. Participants in this study reported that their patients often do not recognize the exact nature of their condition.

I do not think some of them realize that they have changed—either the personality or their anger or their memory. They do not realize that it is all normal—it is all tied together.

Maybe some of them thought, “Maybe my balance is not that bad,” but then when we go through all the testing, it is bad .... And then as we talk with them, we might find more cognitive problems that they’re having.

I think some of them do not understand the limits that they have. They look fine so they try to push, push, push.

They know they’re not feeling good, but it’s almost like until you start doing the evaluation and start talking to them about their symptoms, they do not fully really understand what they’re experiencing.

Participants also reported that some of their patients do not recognize their limitations or inabilities as symptoms. Other patients know of their symptoms but do not recognize the pervasiveness of the functional impairment.

Some say, “I do not understand. I was able to do all of this before. I have all these other abilities. But it’s still so hard for me to initiate getting out of bed in the morning or putting a plan together for myday.”
They did not understand that they’d be facing so many challenges across a multitude of fronts.

Because the preexisting misunderstandings that patients have about concussion are often coupled with impaired appreciation of deficits, working with mTBI patients can be both challenging and frustrating.
This lack of self-awareness is likely also a function of denial and minimization responses that are common and even vital in traumatic situations. Participants reported patients’ resistance to acknowledging their deficits.

They ask, “Why is this so hard? That should not be hard. I should be able to do that.”

People kind of get back to the workplace and they do not want to come out and say, “I cannot handle all this right now. I’m not the same person as I was.”

They realize how bad they feel when they try to get back to their regular routine; when they try to go back to work.

Though initially useful as a temporary coping mechanism in the face of a traumatic event, downplaying functional limitations that result from mTBI can make it difficult for practitioners to fully address their patients’ rehabilitation needs.