When people do not believe you
When people don't believe that you have brain injury or that your functioning fluctuates
Often, someone with a brain injury has no outward physical signs of injury, and may have difficulty convincing others that he or she has a disability.
"My brain scan shows no abnormalities."
(NOTE: An MRI or a CT scan that shows nothing unusual cannot rule out a brain injury.)
"The benefits agency states that I have recovered and no longer need rehabilitation or guidance."
"My parents say that it is all psychological, that I am exaggerating everything."
"My boss says that 'fortunately' I look good again and should be able to cope with the workload again".
An invisible disability even when there is visible damage
Brain damage is often called the invisible disability because the person does not appear to be injured on the outside, except for people with half-sided paralysis, loss of strength, speech and language problems, epilepsy and coordination problems. They also suffer from more consequences than what is visible.
Even if the damage is caused by trauma, such as a traffic accident, someone can physically heal so well that the person appears to have fully recovered.
Unfortunately, even with a so-called 'mild' brain injury, a person can be faced with cognitive impairments, such as difficulty with memory, concentration, motivation, fatigue, stress, depression and more... (read more).
People who sustain a brain injury often find that family, employers and friends have difficulty accepting the term brain injury, if there is no physical visible evidence.
Information
Family members often gain some understanding of brain injury by reading about it. People’s ideas often turn out to be based on what they have seen in movies: a person gets beaten up, is then briefly unconscious, forgets who he is, then his memory is restored shortly afterwards, and then he is fine again. Or the other extreme: a life in a coma and on machines.
On this website you can find movies about people with brain injury.
Acute phase, rehabilitation phase and chronic phase
Many people think that the word brain injury is related to the phase in the hospital in which someone is kept alive with all kinds of machines. As soon as someone can physically move again and has completed the rehabilitation period, it is assumed that the person can count himself lucky. He or she 'made it' and 'got off lightly'.
Then people forget that there are three phases of brain injury: the acute phase, the rehabilitation phase and the chronic phase.
In the acute phase, the neurologist does his utmost to keep someone alive and to keep residual symptoms as small as possible. In the rehabilitation phase, the rehabilitation physician does his utmost to allow someone to lead an independent life as much as possible.
Rehabilitation does not mean that someone will return to their old level.
In the chronic phase, many people have to manage on their own.
- This website provides information about help in the UK.
- This website provides information about help in the US.
- This website provides information about help in Ireland.
Coping with it
This website mainly focuses on the long-term consequences: the chronic phase. The phase in which a person has to cope with a brain that no longer functions as it used to.
Where that horrible fatigue (neurofatigue) has become a daily phenomenon. Where the invisible consequences are often more cruel than the visible consequences, if there are any. With consequences that they will gradually discover because something simply does not work anymore, no matter how hard they try.
Most people with brain damage try to fight back to their pre-injury level after the injury. They remember themselves as energetic or want to return to the person they were who got things done by 'just pushing through' and 'gritting their teeth'. This strategy only seems to exhaust the person after the injury. The brain seems to refuse to cooperate with the will of the person with brain damage. The overdrive mode that many then go into is even more exhausting.
Performance may fluctuate
The following information is important for employees of official inspection bodies who have to assess functioning:
Realize that functioning in people with brain damage can fluctuate intensely. It can worsen (also physical) complaints if things are not going well, and reduce complaints again if things are going a little better. There are many factors that influence functioning, including external factors such as sensory stimuli, weather conditions and unexpected events that drain the 'battery' faster.
Then it can happen that, for example, muscle control, balance, motor skills, speaking and/or thinking decrease or fail. The brain sacrifices these functions, temporarily, as it were, in order to survive.
It is a lifelong struggle to find a precarious balance every day.
Brain injury means finding your balance every day.....
Preconditions
People with brain damage can lead a reasonably stable life if the preconditions are met. If they do not function stably, there is often something wrong: an illness, over-demand, overload, overstimulation, a too hot summer day or other extreme weather conditions, an unexpected or acute situation.
Prerequisites may include: rest, a low-stimulus environment, regularity, structure, proper support, relief in areas where the problem lies, clear boundaries and safety.
No unconsciousness and still injured
There has been a tremendous amount of medical research and information that shows that even in cases where people have not been unconscious, they can still have lifelong short-term memory problems, emotional instability, and a wide range of other consequences.
Unfortunately, people with brain damage are often left with lifelong cognitive effects (in perception, thinking, acting, applying) such as sensitivity to stress, inability to work, problems with memory, image and sound and odor overstimulation and extreme fatigue (neurofatigue).
Brain injury often has lasting consequences in terms of musculoskeletal disorders, migraines or other headaches, auditory and visual impairments or hormonal imbalances (neuroendocrine disorders).
Often unaware of permanent situation
Insurance companies, company or medical examiners, lay people and loved ones are often unaware of the often permanent nature of the consequences of brain injury and that a 'return to normal health' does not occur in most cases. In some cases, people even have to take legal action to obtain the help they need.
Money?
There is a misconception among the general public that taking legal action is about getting financial compensation.
People are often more concerned with the recognition of a very difficult life, understanding of what they can no longer do or the need for outpatient support or certain therapies for the rest of their lives.
Evidence Methods
A neuropsychological assessment is used to identify brain injuries, their functioning, and the strategies needed for recovery. The tests include a variety of different methods to evaluate areas such as attention span, memory, language, new learning, spatial perception, problem solving, social judgment, motor skills, and sensory awareness.
These tests can be quite expensive.
Sometimes a mental endurance capacity study can be used.
This is partly to 'measure' fatigue and capacity.
Good friends and family who know someone will see how the person is 'doing well' or can still remember how the person was before the injury.
Sometimes, however, fatigue is only noticeable when, for example, actions, speech or movements are less effective. Cognitive and physical complaints can also worsen during fatigue.
People can then have problems finding words, stuttering, make slips of the tongue, and no longer get to the point with their speech.
It is no wonder that brain injury survivors become discouraged when others do not accept that they have this disability. After surviving the brain injury, they receive criticism instead of support.
What the MRI does not show...
Some people refuse to believe that brain injury exists unless there is strong medical evidence. Moderate to severe brain injury leaves scars that are clearly visible on MRI or CT scans.
The brain has a limited ability to heal itself and in some cases the evidence may not be visible on a scan after several years, even though cognitive deficits remain.
Furthermore, an MRI or CT scan that shows nothing unusual cannot rule out brain injury.
A blood flow scan, PET scan (Positron Emission Tomography) or SPECT scan (Single Photon EmissionComputed Tomography), can often show more than a regular MRI scan. However, the use of this technique requires an urgent medical situation. Not to provide evidence of injuries sustained in the past.
- The PET scan uses small amounts of radioactive materials called radiotracers, a special camera, and a computer to assess your organ and tissue functions. By identifying changes in your body at a cellular level, the PET scan can detect abnormalities or disease before it shows up in other imaging tests. It measures not only blood flow, but also sugar metabolism and oxygen uptake. The injected radioactive substance quickly disappears from your body and is not harmful.
- The SPECT scan also uses small amounts of radioactive materials that accumulate in certain tissues or organs so that an image can be made of them.
The radioactive materials disappear quickly from the body and are not harmful. The advantage over an MRI scan or a CT scan is that a SPECT scan mainly shows the functioning of the brain and the other scans show more of the anatomy, i.e. the brain structure, any scars from brain damage (think of ruptured blood vessels), the location and size.
Read more detailed information, including why brain damage is sometimes not detectable on a scan, on our page on brain scans.
Microscopic damage with life-size impact
A CT scan or MRI scan does not show torn axons, which can cause so many complaints. Not every brain injury leaves visible scars. In that case, a blood flow scan may be a way to see if there are blood flow problems.
Axonal injury (at a microscopic level) is not shown on scans despite the enormous impact it can have. Sometimes it can be visualized on a blood flow scan; the so-called PET/spect scan. But here too, a normal PET scan does not necessarily rule out brain injury. Read more on the diffuse brain injury page.
Links to websites on misunderstanding
https://www.sciencedirect.com/science/article/pii/S0887617703000258
https://biausa.org/public-affairs/media/true-or-false-seven-common-myths-about-brain-injury