Why Brain Injury Is Misunderstood: "But, You Look So Good!"
When you don't feel as good as you look, it can impact your whole life.
Posted Mar 16, 2017
March is Brain Injury Awareness Month. Ironically, it is also the anniversary of the brain injury I sustained from a 60 mph head-on car collision. I can still remember for many months after the accident, and the brain surgery that followed, people would say, “But you look so good!”
This is often the case with survivors of a brain injury because brain injuries can not be seen. While I may have appeared well and healthy on the outside, I was not the same person I was prior to sustaining a brain injury. I faced many challenges and some very dark days.
There is no doubt that life is different after a traumatic brain injury. It can change every facet of one’s life. Statistics show that there is a higher divorce rate for, and increased emotional abandonment of, people who incur disabilities. I found in my own recovery that the abandonment of people I depended on to care for me was a major loss. And then there is grief. Grieving the loss of the person you used to be is not only normal, but it is a necessary part of recovery.
#1 Misdiagnosed Condition Worldwide
Mild and Moderate Brain Injury is the leading misdiagnosed condition worldwide. It is often confused with symptoms of Post-Traumatic Stress Disorder (PTSD) and sometimes Grief, since many of the symptoms of a brain injury, specifically Post-Concussion Syndrome (PCS) do overlap. See the table below.
Please read over the various symptoms again from PCS. None of these symptoms affect the way a person looks on the outside! This is one of the contributing factors as to why brain injuries are often misdiagnosed, because in most situations, the way you look, your speech and body movement are not disrupted, as you would see in a stroke or severe brain injury.
People who suffer a concussion (a mild traumatic brain injury), or any other type of brain injury, are often judged by others for not being able to resume normal activities, or recover as quickly as others would expect them to, because “they look so good!”
This is also seen on many of the numerous Facebook groups relating to Brain Injury. There are thousands of posts from sufferers complaining that no one truly understands what they are going through because, well… “You Look So Good.” In addition, these suffers are complaining about ongoing symptoms and asking each other for advice. Why? Because in most cases, even medical doctors, unless they specialize in neurology, do not fully understand brain rehabilitation or how to treat concussions.
A good example of this happened recently to one of my patients, who is an Equestrian. After falling off her horse, she was told by her PCP that from his observation she did NOT have a concussion.
Yet she had many of the classic symptoms seen in the table above. Even she was doubtful because she felt the injury wasn’t that bad and her PCP said she didn’t have a brain injury. Was it because she appeared well?
After months of symptoms and doubts, I finally convinced her to have a Quantitative EEG, called a QEEG.
Many of you have heard of an Electroencephalography (EEG), the measurement of electrical patterns at the surface of the scalp which reflect cortical activity, and are commonly referred to as “brainwaves”. Quantitative EEG (qEEG) is the analysis of the digitized EEG, and in lay terms, this sometimes is also called “Brain Mapping or just a Q”. The qEEG is an extension of the analysis of the visual EEG interpretation which may assist and even augment our understanding of the EEG and brain function, which then is converted into color maps of brain functioning called “Brain maps”. QEEG are also specific evidence that can be used in a court of law to prove that you’ve had a brain injury.
My patient’s QEEG clearly showed she had a concussion with significant disruption to her brain. Indeed, she had sustained a brain injury from the fall from her horse. From this QEEG, we were able to do a specific neurofeedback treatment that has been extremely successful in treating her symptoms.
Treating Symptoms is NOT One-Size-Fits All
One troubling issue is that this peer-to-peer advice or suggestions from PCPs tend to give generalized recommendations for a specific symptom. Take, for example, a person who has trouble with their memory. The recommendations that I have seen for this are impersonal, antidotal and subjective. Therefore, they may or may not work, depending on the unique individual.
This is one of the many reasons I co-authored “Coping with Concussion and Mild Traumatic Brain Injury”. Through my own experience, I realized there was not enough information or resources dealing with traumatic brain injury.
Even my own doctors told me I would not get well and would not make further progress. One doctor actually said, as he wagged his finger in my face, “You need to go to a therapist to help you understand that you are Permanently Brain Damaged, and you are never going to get better.”
But I found ways and methods to regain my life, and now share this knowledge through my books, speaking engagements, and consults in order to help other survivors overcome obstacles and regain their lives as well!
Please see this list of treatment methods that helped me recover from my own brain injury and can help other survivors too.
If you know someone who has a brain injury, don’t judge them because they aren't functioning as well as they look on the outside. Raising awareness is important because, aside from suffering discomfort and pain, people with invisible injuries are likely enduring emotional distress as well, because no one seems to understand their pain.
For all of the millions of misdiagnosed or under-diagnosed people with a brain injury, who have been told, “But, you look so good," know you don’t have to suffer in silence. There is help and hope. You just have to know where to turn.
There is a Way!®
© 2017 Dr. Diane Roberts Stoler, Ed.D. All Rights Reserved.