Fifteen misconceptions about people with acquired brain injury
Author and copyright ©: Jet van Swieten (partner of a person with a brain injury) nahverborgenkopzorgen blog. In response to the page "wat mensen met hersenletsel willen dat jij weet" Nothing from this page may be reproduced without the written permission of Jet van Swieten.
(Where "he" appears, you can also read "she").
Fifteen misconceptions about people with acquired brain injury
by Jet van Swieten
Almost daily, you encounter misconceptions when communicating with and about people with acquired brain injury. These are ill-considered statements and platitudes, often delivered in subordinate clauses, that once again demonstrate how difficult it is to understand how the person's life has changed after a stroke.
The conversation partner is unaware of this.
He does not intend to hurt. Usually, the statements are even meant to put things into perspective and encourage the person affected.
It is precisely these commonplaces that strike the person affected and his partner as a denial of their limitations.
They may feel compelled to defend their place in the world, yet again. It affects them deeply, their "uniqueness," their new nature. They feel unrecognized for who they have become. It's already difficult for them to accept their limitations. The people in their social circle would help them if they had a more realistic view of their limitations. I list fifteen of these misconceptions here.
1. He lets someone else do all the work
If you see someone with a brain injury resting more often, it doesn't mean he is lazy. His energy reserves are depleted more quickly by the brain injury. All the actions that those affected perform often require extra energy. Thinking also requires extra energy to sort things out and organize them.
Actions that a healthy person performs automatically don't happen automatically but sometimes have to be done consciously. The brain of an injured person has to work harder and therefore tires more quickly. Within two hours, their entire daily energy supply can be depleted.
Someone with a brain injury delivers a peak performance daily, comparable to that of a top athlete.
2. He looks fine. I don't see anything wrong with him
Just because the person affected looks fine on the outside, that he is able to walk, cycle, use his arms, and doesn't have noticeable difficulty speaking, doesn't mean there's nothing wrong.
He can be left with all sorts of problems. Memory becomes difficult, actions that used to be self-evident have to be retrained with compensatory strategies, chronic fatigue, depressive moods, or even overly cheerful behavior, disinhibition, poor fitness, and other invisible problems can be disabling.
These invisible limitations can often be more difficult to live with than visible paralysis.
Even though that may sound bizarre, you don't want paralysis either. It's visible. You can assume that the person affected with invisible limitations doesn't have just one complaint that they and their partner have to live with. But they are often not heard. It involves a whole range of complaints.
3. I am tired sometimes too
As described under point 1, chronic fatigue is not the same as the feelings of exhaustion experienced by someone with a brain injury. Of course, everyone gets tired sometimes. When a healthy person has exerted himself to the utmost or has spent a day without a break trying to solve a huge problem, he gets tired and grumpy. That is perfectly normal.
It is abnormal to wake up in the morning after a night's sleep and find that your battery isn't fully charged, but only halfway. To think that within a few hours, that half-full battery is already so depleted that it takes several days to refill it to that half-full state. This means that there is chronically less energy available. All activities that take place in a person's life must be reduced to manageable portions.
4. He has been lucky
It seems like a good idea for an outsider to emphasize the positive aspects of the disease's progression. However, the many problems that exist may lead both the person affected and his partner to adopt a less than positive outlook. The person affected may develop depressive symptoms and, due to his limitations, is not at all happy about having survived.
Life has also changed dramatically for the partner. He loses the partner he chose and gain someone in return who has significantly changed in character. He grieves the loss but often doesn't receive recognition for that grief, which hinders the healing process.
I prefer to call it chronic grief. That way I'm trying to be realistic.
5. He's not interested
Conversations at birthday parties are often very tiring for someone with a brain injury to follow. Spokespeople switch back and forth. The person with the injury is right there in the middle of it all and wants to join in, but is distracted by other conversations taking place in the same room or by the music playing in the background. When he participate in a conversation, it takes him more time to process what is being said. Therefore, it takes time to think about what he will contribute. By the time he finally finds the words, the conversation has already gone off track, and his contribution is no longer relevant. That is why he often seems to withdraw when he is quiet or he seems disinterested. The constant chatter can also suddenly become overwhelming. He may suddenly walk away to protect himseld. Or, if it bothers him, he may suddenly ask for the music to be turned off.
Even if his behavior seems inappropriate in company, he can't help it.
6. He interrupts me out of the blue
In a conversation, a person with a brain injury may suddenly interrupt. This seems rude.
He has just thought of something to contribute to the conversation. It takes all his energy to hold on to what he has thought. As a result, he loses track of what the other person is saying. To stay engaged in the conversation, he may immediately bring up what he is thinking and interrupt. This isn't rude behavior. It is a strategy to keep the conversation going with his contribution.
7. He says that he can handle that job
Limited insight into the illness causes the person affected to portray himself as bigger and better than he actually is. This is not always easy for an outsider to assess. When is it true when someone says he can handle something, and when not?
An outsider would do well to empathize with the person affected without prejudice. He can try to assess whether the person affected realizes whether a job is feasible for them. If necessary, ask the partner about his expectations.
Hidden limitations, such as those mentioned in point 2, may have difficult consequences if limited insight into the illness plays a role and the person affected pushes himself too hard.
Self-overestimation also plays a role in this.
8. Maybe he should do more
If the person affected is apathetic or chronically fatigued, a kick in the butt won't help him do more. The idea that perseverance will lead to improvement is a misconception. The person affected regularly raises eyebrows and achieves enormously every day, and would love nothing more than for his limitations to disappear. Telling him he has to do more than he can handle or than is possible based on his limitations makes him insecure and can increase his feeling of guilt.
Don't raise your expectations too high. Instead, tell him you admire his perseverance and that he should take it easier.
What can't be done today can easily be left until tomorrow.
9. He must build up his fitness gradually
Athletes do indeed build up their fitness gradually, step by step.
For the person affected it is different. Fitness is no longer self-evident at a certain level and doesn't improve.
The degree of fitness varies from day to day. Sometimes it's harder to perform than at other times. Exercising every day doesn't necessarily mean that fitness, measured over a longer period, will improve.
Much depends on how charged your battery is and what activities you've done. Anyone who had a tiring conversation the day before knows for sure that their performance will be lower.
10. He's so different, he doesn't greet me anymore
If a person with a brain injury doesn't greet, it doesn't indicate conceit. Sometimes it is just not possible. In one case, the person may be busy trying to remember his purpose. He may not pay attention to his surroundings and may easily walk right past someone. All his concentration is needed for that single goal. Memory may also play a role. Some people can't remember or recognize faces. Sometimes there's neglect, meaning that part of the visual field is not perceived.
So it is not out of conceit or shyness that someone doesn't greet.
11. He avoids difficulties
It's quite possible that someone with a brain injury tries to avoid things. For example, he may not answer an incoming phone call because, if he would answer it, he would have to switch to a conversation unprepared.
He does not know the purpose of the call and can not anticipate it immediately. He may have already solved a problem that day, and his brain is now too tired to switch. This applies to many activities.
Problem-avoidance behavior has nothing to do with phobias but is a self-preservation strategy. In general, behavioral problems associated with acquired brain injury do not stem from a psychological disorder but from the inability to cope with a particular situation. The problems have a physical cause.
12. He may suddenly lose his temper
Despair often underlies that sudden outburst of anger that someone with acquired brain injury can have. It's a way to quickly and immediately guard their own territory and continue with what they're doing undisturbed.
When they're tired and overstimulated due to various factors, they can't handle it anymore. They then easily switch to a primary reaction, such as anger. It's then impossible for them to respond thoughtfully.
13. He doesn't listen - even if it's repeated
Sometimes it's necessary for someone affected to shut themselves off from their surroundings for a while to return to themselves. They need this to shut out all the stimuli and recover from the life around them. This can happen suddenly in the middle of a conversation. It doesn't mean they don't find it interesting or that they don't want to participate. They simply can't anymore. It's also possible that the message the person is communicating is too complex for them. In that case, it's better to speak in short sentences, maintain a slower pace, and occasionally ask if they can still follow.
14. He is stupid
It is possible that an intelligence test taken after the stroke yields a lower score than before. This doesn't mean the person affected is suddenly less intelligent or even stupid. Gaps have developed.
Ready knowledge has suddenly disappeared, or the connection between cause and effect is lost. Sentences with double negatives are notorious. It takes too much brainpower to apply logic to them in a short time. All this doesn't make the person stupid. It's very frustrating for the person affected when something that used to be easy now takes so much energy and time that it's no longer possible.
15. He is able to work
Bystanders don't realize how disabling the invisible limitations may be.
The environment in a rehabilitation center is different from home. There's a certain regularity, allowing many activities to fall into place naturally. At home, the person affected is confronted with far more stimuli, with all the ensuing consequences. Regularity more or less disappears. This regularity serves as a guide for daily planning.
In a work environment, additional stimuli are added. Sometimes, by adjusting the workspace and providing colleagues with good information about the nature of the limitations and their options for responding, it's possible to maintain a fulfilling working life.
For those who are easily overstimulated, suffer from chronic fatigue, and can no longer keep up with the hustle and bustle of work, or who consistently experience certain problems that compromise the quality of their work, or who create downright dangerous situations, a work environment is not ideal. The majority of those affected by invisible disabilities ultimately end up at home due to illness.
Compensatory Strategies
The invisible limitations of acquired brain injury are not the same for everyone.
Some limitations may become prominent at one moment and barely noticeable at another. They never completely disappear.
Compensatory strategies are necessary to learn to manage the problems caused by the limitations. Sometimes it is not impossible to learn a compensatory strategy. It only works well under fixed conditions, with regularity and rest at a pace tailored to the individual.
No two people affected are the same. This means that those around them must also be constantly aware that the necessary conditions are being maintained.
Strategies are learned during rehabilitation. Long after rehabilitation, new limitations may emerge.
For the person affected, this means that rehabilitation, whether in a rehabilitation center or at home, lasts a lifetime.
These fifteen misconceptions certainly do not address all the prejudices. I have probably forgotten many.
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