Loss of Insight – For People Living with Brain Injury

  • Introduction
  • What is Loss of Insight?
  • Signs You Can Notice
  • The Problems Lack of Insight Cause
  • From the Inside
  • From the Outside
  • Things that Help
  • Long-term Outcomes

Introduction

One of the hardest things anyone living with a brain injury must do is to learn what is broken so that you can work on fixing it. 

One of the key reasons for this is that initially, it can be difficult to recognise the brain is struggling, and therefore it can still feel like it is ‘working in a familiar way’ although differently.

Because each of us is different, and because every brain injury is unique, it is challenging to provide generic information about what is ultimately a highly sensitive and personal change.

Each of us will notice the variable outcomes of our brain injury at different stages. Sometimes it can take years to see the details in our impairments post-injury. People who retain their insight and self-awareness are usually more aware of their deficits.

While your journey is highly individual and personal, there are also many commonalities in how we experience executive and cognitive dysfunction.

What is loss of insight?

Loss of insight is prevalent after brain injury and can show in many different ways, most noticeably when we are unable to self-feedback or process information about ourselves, our actions, communication, and behaviour. 

The term, ‘loss of insight,’ is used interchangeably with lack of self-awareness; however, while both are caused by disruptions to thinking and executive functions, it is the loss of experiential memories which adds to and creates the loss of self-awareness. They are experienced very differently.

When this deficit isn’t understood, or we don’t know about it, the challenges this raises can quickly disseminate out – turning ripples into tidal waves.

If you know some information about your brain injury, but it feels as though this knowledge is held like a fact rather than something you know because you are aware of experiencing it, then it is likely your executive functionality has been affected by your injury.

Think of how it feels when the penny drops or you have a lightbulb moment, these experiences are related to when you have realised something and made a connection between new information and something you already know. 

It is this mechanism that can be affected by a brain injury, and it can be a barrier between you and other people who are trying to help you. 

With a loss of insight, you can struggle with understanding the world around you and where you fit in.

You can also easily misinterpret incoming information that is related to you, and can have difficulty in understanding how you relate to others/facts/data.

If you feel disconnected from the world around you this could indicate that your previous feedback mechanisms aren’t currently supporting you. 

You may notice there are bigger gaps between your perceptions and those of other people – it can feel as though everyone has a different opinion to you. It might feel as though they aren’t listening to you, haven’t understood, or you might think that everyone is getting the wrong end of the stick.

Loss of insight is happening when you are unaware of the cognitive, emotional, and behavioural changes caused by your brain injury

Loss of insight causes you to struggle with self-observation, and with reflecting on your thoughts and actions after an event. Loss of self-awareness, on the other hand, causes people to sense a ‘loss of self,‘ which can be very frightening and disturbing.

When a loss of insight and loss of self-awareness happen together, it can be extraordinarily challenging to understand what is happening. When other people speak factually, in medical terms, or try to offer feedback in personal terms, this can often make things worse. It is better when we are led towards making personal considerations about yourself and are given time to figure things out on your own.

Struggling to understand you need help

Dealing with the outcomes that transpire from a loss of insight, is usually extremely problematic for everyone.

It is rather like people observing that someone looks ‘fine’ from the outside when they aren’t, but in this case, it is the feeling of being ‘fine’ on the inside that gets in the way.

When you are unaware that your feedback loop isn’t working, you can struggle to recognise or understand what other people are saying about your actions and communications, and why.

You may find that people are always correcting you, and perhaps tell you that you are in denial. The typical reaction to this is to feel confused, to reject what people say, and to wonder how others just don’t seem to be able to get it.

In this scenario, you aren’t in psychological denial – your brain isn’t helping you with understanding the things you usually would. Being told you are in denial seems unfair because, in relation to loss of insight, it is. 

Very often, we believe we have understood perfectly well, and that others have failed to listen to or follow us. If this happens to you regularly, and if you feel okay on the inside but are always at cross purposes with others, or only know that your brain works differently but don’t know how it is, you may be struggling with a loss of insight.

For example, if other people regularly scold you for not doing tasks/contributing or tell you that you are lazy, then an inability to process this against your understanding of your external environment, or match this against your internal thinking, might be a sign that your feedback loop isn’t working.

Initially, you might also not recognise the impact of how tired or lacking in energy you are, and also how much you rest.

You may not know or notice that you are not contributing in the ways you did before or may not comprehend you are the cause of many of the issues that arise.

It may not occur to you to consider this lack of understanding because what you are doing and saying feels reasonable and justified to you. Differences in viewpoints is often another sign that you may need some help with understanding how your brain injury has affected you.

Considering yourself in a new light

Every experience of brain injury is dependent on so many factors that you may need to consider yourself in an entirely new light, and be open to what other people are trying to tell you.

Lots of things can get in the way of you being able to hear what you need in order to progress, many of which stem from the most fundamental aspects of who we are such as the need and drive to be independent. Understanding that it is the injury causing the changes in how we speak and behave is crucial because nothing you have done is in any way at fault.

One of the biggest hurdles to be crossed for your family and friends, or perhaps your doctor if you have seen one, is helping you to understand that you need help.

Lack of insight can also be very problematic for professionals to manage and can have an impact on rehabilitation so if you do have the support of specialists and find you don’t always connect with their meaning, this could be another indicator that you have lost the ability to have self-insight.

If you receive feedback with distrust and are sceptical about the efforts being made by those around you, join a support group and speak to other people who have struggled with a lack of insight, and ask them how they felt about their experiences. Describe how you feel to them, and see what they have to say.

Crossing the realisation hurdle can be distressing because the ‘internal’ information that should help you to understand, i.e., self-feedback, is missing. For example, if you have been restricted from carrying out a particular activity, you may only know you were being told not to do something. In these instances, you will be unable to fill the gaps which should help you understand why you were restricted, and you will likely miss comprehending the reasons behind this even when they are pointed out. Does any of this sound familiar?

The primary and automatic workings of the brain continue in the same vein after an injury so, in effect, the brain itself believes that things are business as usual. Understanding this can lead to breakthroughs and to you being open to receiving help.

You may know that something is wrong but be unable to put a finger on it. In many ways, you may feel desperate for help, but don’t know what type of advice to ask for because of a lack of understanding about your confusion. On the other hand, you may have no realisation that anything is wrong or may blame others for upsets and arguments or a lack of understanding.

While some people are in psychological denial during the time they are trying to come to terms with all the changes a brain injury brings this is not a determining factor of lack of insight although if it coexists individuals may be unaware of this.

In all cases, it will feel to you as though you are doing the ‘right’ things in your usual way.

The problems lack of insight cause

Family and friends may struggle with knowing what to do for the best and, when many of their efforts fail, they may feel disempowered themselves.

When the intention is to protect and help you, it can be very hard for relatives and friends when they receive negative responses such as feeling ignored or shut-out when you go away to be quiet because you need a break.

You might be unaware of shouting or arguing with them over almost every shared event or communication and may quickly forget. Still, your family will remember, and they will struggle to cope with changes in your behaviour; they will be frightened and worried and not know what they can do to help.

For them, rallying around can start to feel like they are not helping at all; if they seem worried or stressed, they might be feeling out of their depth.

If you are unsure about the effects your brain injury is having on other people, ask them. You don’t have to agree with what other people tell you, but it is imperative that you accept their truth and revisit what they tell you as often as you can.

With time, you will understand how the injury to your brain has more significant consequences than you can see or understand while your brain continues to have issues with processing and self-feedback.

Think about if you find yourself arguing or feeling defensive very often. If you do, this may be why your family and friends feel stressed and frustrated and may spend less time with you.

In time people around you can become resigned and upset when you continue to act inappropriately or aggressively and, to them, it will seem as though you don’t care about how they feel. You know that you do still care, but may notice this caring ‘can’t get out.’

Families can become desperate and will recognise they need help so they can better support you. Suppose you are unable to see their point of view cognitively. In that case, you may instinctively refuse point blank to be involved with any rehabilitation or talking therapies believing you don’t need help. Just the mere suggestion of getting help can leave people living with a brain injury feeling uncared for and misunderstood because they can’t see what those around them can.

Don’t think of it as ‘you’ who needs help or therapy. Think of how much support your brain needs to rewire. Think about how you need to be taught how to facilitate that.

Things can become more confusing for everyone when the loss of insight isn’t ‘total.’ For example, someone may be aware of other physical injuries, or that they can’t remember things, but may have no idea that any other issue exists. To your family and friends, this ‘evidence’ can seem contradictory, and this can lead people to think that you are in psychological denial, rather than understanding that you are unable to choose which things you are aware of that have changed.

The danger is between being able to tell the difference and being careful not to put all behavioural changes down to a lack of insight. There are many outcomes of brain injury that can all play a role in changes in behaviour and understanding, which is one of the reasons why it is so important to see a neuropsychologist.

From the inside

From the inside it can feel as though you can’t do anything right.

 It feels as though you are always being told off, and that no one understands you. The problems don’t feel as though they are coming from you because the motions of intention and sponsoring thought feel the same. Do you ever wonder what on earth you did that made people stop listening and caring?

Most people don’t get past feeling incredulous when offered feedback and therefore commonly reject other people’s interpretations. To someone living with a lack of insight, it feels as though everyone is making assumptions, and that they are always jumping to the wrong conclusions.

One of the main reasons for this is that the core intentions stay the same. Underneath the layer of cognitive disabilities, there remains the real you still automatically firing from the same place you always have. The thing is that the higher levels of conscious interruption and control have been altered or taken away, so, there is no conscious awareness that anything observed on the outside, is any different from what everyone has always been able to see.

Why can’t you see what is wrong?

The deeper parts of the brain are the best protected. Generally known as the ‘reptilian brain,’ it is this area of the brain that automatically outputs the impetus for behaviour in predictable ways that we see as the personality. Once an impulse is set off in an uninjured brain, it is then filtered through a mass of learned data that helps us be conscious of things like intention or motivation.

This filtering system is one of the roles of the ‘executive system,’ which is often impaired by brain injury. Because of deficits in the way the frontal lobes work, the output becomes ‘raw’ as it no longer being checked against your personal beliefs, history, and previous choices. What comes out and is seen by others doesn’t match your intentions.

If we go back to the iceberg example in ‘increasing your awareness,‘ we can start to figure out how the disparities between ‘automatic behaviour’ and seen behaviour can occur. If you don’t know that you are different, and the brain isn’t feeding any of the changes other people see back to you – you remain oblivious. You may also be unaware that the dynamics of your relationships have changed or, if you do know, be unsure about why.

It can take a long time to work this out on your own, and in the meantime, everyone gets stuck in an endless cycle of complete bewilderment, bemusement, and confusion.

Because many people don’t think they need help, they will often feel insulted when this is suggested to them. Some people will flat-out refuse even to consider speaking to a doctor about rehabilitation because they believe they are okay.

Please listen to your family and go along with them to your doctor and ask for a referral to a neuropsychologist who will be able to assess the changes caused by your brain injury. You will feel better knowing, and tremendously relieved to be understood.

Better still, you will be able to psychologically and intellectually contribute to your recovery in ways that are hugely difficult to do without insight. Get support with learning how to rewire your brain. No one wants to change ‘you’ – everyone wants to help you get ‘you’ back by teaching you about all the things that have broken.

From the outside

For families and friends dealing with someone unable to receive feedback, life can be distressing and frustrating. It can be hard to be patient with someone who seems incapable of listening – especially when they ‘look fine’ on the outside.

In a marriage or partnership, it can feel as though all the responsibility for the health of the relationship now falls back on them. Relatives describe feeling alone, abandoned, and isolated. Extra practical obligations and stress from fear and worry can be draining, especially for people who were previously able to share everything with you. A lot of people feel sadness and as though they have lost their closest friend and constant ally. Many people describe a complete change in the dynamics of intimate relationships and say that they feel more like a carer than a spouse. There can be a deep sense of loss or grief if romance or affection is ‘gone.’

One of the most challenging things to come to terms with for your family is feeling a loss of the support you used to give them even though you probably think you still do. It can also be tough for them dealing with the suddenness of having to take on many more responsibilities alone. Every situation is unique, but these commonalities do crop up very often.

Lots of people turn to others who are going through similar experiences for help and support. Peer support can make a real difference in helping people feel they are not alone. Reach out and encourage your family to get support too because even though it is you living with the brain injury, it will impact their life also.

Loss of insight can look like selfishness, laziness, ignorance, rudeness, a bad attitude, all of the above, and more. You may have been accused of these things since your brain injury and may struggle to understand why. When you get help, your family will too, and they will be given information to help them understand and know how to support you.

Any change can throw anyone off track – with or without loss of insight and other cognitive changes – but that ‘true’ self always keeps fighting to come back – because it is always still there. Everything about your life and relationships relies on you getting help as soon as you can.

Things that help

Understanding that other impairments can exacerbate problems with loss of insight is crucial

If you are unaware of how a loss of insight can deepen your struggles with other executive and cognitive deficits, you will also have greater difficulty with reinstating skills. The following are examples of how a loss of insight can make things more difficult:

  • Difficulty focusing + loss of insight may mean it is even harder to listen to feedback or incoming information fully

  • Slowed processing + loss of insight may mean that you can grasp some aspects of communication but not others worsening problems with insightful understanding and how we relate incoming information to stored data

  • Short-term memory problems + loss of insight may mean that you forget the aspects you previously grasped with poor insight possibly adding to this creating even wider gaps in understanding

  • Working memory problems + loss of insight may cause you to completely forget an incident creating gaps in your understanding that often goes unnoticed which can cause problems when someone else wants to address or talk about that event

  • Long-term memory problems + loss of insight may mean you get something right ‘now,’ but because you are unable to relate it to yourself it is stored as an impersonal fact meaning that parts of the information are not stored at all increasing problems with accurate recall/understanding/accurate discussion

  • Impaired reasoning + loss of insight may mean you are easily overwhelmed by even a small amount of information

  • Impaired thinking + loss of insight may mean you commonly get the wrong end of the stick without realising it and possibly grasp a small amount of information which you may have no idea what to do with

  • Unaddressed grief + loss of insight may mean you are too emotionally drained to cope with anything else without recognising why or being able to make necessary connections

  • Loss of sense of self + loss of insight may cause you to be in a constant state of unrecognised stress and confusion and to lose self-confidence and your ability to bounce back – impairing what else you can take on

  • Loss of self-monitoring skills + loss of insight may mean you don’t realise you did anything out of the ordinary, are struggling with/didn’t complete a task

Some of the following generic suggestions may seem impractical or may not suit your circumstances or you personally. Every brain injury is different, and every person and journey is both individual and unique, so please pick and choose to find what works for you.

Pause and breathe before responding and discuss the use of any strategies you think will help you with your family and friends.

Try to remember:

  • You may not have the same cognitive capacity to control your emotions and reactions.

  • Loss of insight may look like many other outcomes of brain injury, as above. Try to give the benefit of the doubt when people provide you with feedback.

  • If you become frustrated, this may lead to confusion, disagreements, anger, and conflict – all things that serve little purpose and serve no one’s interests. The more stressed you become, the more you will create an inflammatory response in your body and brain, making it even harder to think. Try to remain calm and teach yourself to pause, take a break, or to ask others for time out while you process the event. Our habit is to react promptly, however, living with a brain injury and loss of insight interferes with our ability to think on the spot accurately. Take time to sleep on things and give your brain the time it needs to make relevant connections and to gain a fuller understanding.

  • Trying to pursue an argument ‘to be right’ will only make things worse and may undermine trust

  • Try not to get frustrated if you are struggling with a task. It is better to ask for help than to cause an atmosphere. Ask people to take you through the processes needed to achieve a job slowly and to repeat them. It can be a good idea to take notes and also to echo instructions verbally.

  • Be wary of venting directly – you may cause temporary or even irreparable damage to your relationship. Use a journal, speak to friends, or vent in a support group making sure you let other people know this is what you are doing.

Use strategies:

  • Consider using videos of yourself to provide feedback if you struggle with self-observation as you can watch yourself and can pause and rewind

  • Use checklists – these can raise awareness of performance and also help you contribute to tasks

  • Do you have difficulty with decision making? Set concrete goals that are written down and easy to see (whiteboard) and cross off but leave up, so those achievements act as reminders

  • Get online and join support groups – feedback from peers is often easier to accept and often the experiential language used is easier to understand

  • Try to relate tasks to your goals, for example, being able to focus and listen better may help with the goal of being able to help the children with their homework

Communicating:

  • If you have tried to do something on your own and are struggling consider asking for help

  • Make notes of the things you want to talk about in calm and quiet moments and be aware that communication and understanding may be a process rather than being able to find immediate solutions.

  • Treat people with respect and err on the side of caution and avoid trying to ‘sneak something in.’ You don’t want anyone to feel undermined or patronised. It is better to avoid creating situations that you find you later want to undo when your understanding is better.

  • Put time aside to talk about your feelings and when you have finished, listen to your loved one talk about their feelings without interrupting.

  • Consider if you would like your family and friends to point out anything they notice is different and let them know how you feel about this. Your brain will rewire quicker with help because it has a greater opportunity to learn.

  • Ask your loved one what things they have noticed are different and be prepared to listen and write them down so that you can continue to consider this information in your own time. Resist rejecting feedback – given time you will likely notice how helpful it is. If you have questions, take notes. Even if you think someone is wrong and believe they have misunderstood or are unknowledgeable about the outcomes of your injury allow them to do their best. Communicating isn’t about being ‘right,’ it is about taking steps towards improved understanding. Everyone is learning.

  • Prioritise and plan everything, for example, resting before discussions so that neither of you is tired, consider time constraints or commitments that may mean you don’t have time to finish a conversation. If you are worried about forgetting try and write down what you want to say and be gentle with yourself and don’t panic because sometimes a point we want to make is no longer relevant at a later time. It is okay to let things go. Anything that needs addressing will crop back up.

  • Don’t sweat the small stuff – the bigger picture is the one that counts – getting through this and getting better is more important than whether you remembered to put the laundry in the drier.

Understanding your family:

  • There will be a lot more demands on their time

  • Try to notice when they are tired and practice routine tasks so that you can take some of the load

  • Make a note of and include their goals and keep focused on them

  • Use positive affirmations that empower you to stay on top of things

  • Use guided meditations or make time every day to relax, close your eyes, release any tension in the body and let your mind drift

  • Make sure your loved ones get to take time out for themselves every day and support them so that they can or ask someone else to help you to do this

  • Give lots of thought to organising your day and consider long-term goals in your daily priorities

  • Ask the people around you how you can help in the short and long term. Choose a quiet time to do this and bear in mind that sometimes they may be stressed and might find it quicker and easier to do some things on their own. Don’t take this personally but try and notice each thing they are doing so that you can see and work out what you might be able to do to help. If someone is stressed, choose another time to talk about contributions. Make a list together and in quiet times, write down processes or any other information you need to be able to complete a task.

  • Understand their need to join support groups, so they have somewhere to vent if they need to and have people to talk to who are, or have been, where they are

  • Make conscious efforts to note progress so that you can feedback to yourself and others what a great job you are doing

  • Forgive yourself rapidly and allow yourself to be human

  • Don’t chew things over – find a way of dealing with things positively – such as finding out more information

  • Know it is okay to have a bad day – resist being hard on yourself

Other useful tools:

  • Speak to other people – their experience may help you not to repeat their mistakes, saving you time and emotional energy

  • Guide your loved one towards information that is empathetic of their needs and changes, such as blogs or similar stories

  • Let your family and friends know what you are trying to achieve and ask them to support you and to use the same strategies to provide consistency

  • Read as much as you can anywhere you can but make sure you use trusted sources. If you struggle with reading, try browsing youtube for information

  • Avoid confrontations – it just creates yet another hurdle to cross

  • Share everything you learn with other people you may rely on – it helps when everyone is on the same wavelength

  • Invite a friend round to hang out while your partner goes out with their friends – or vice versa

  • Make sure that anyone who visits understands that brain injury is a neurological condition and that it is not a mental disorder – if people can’t get their attitude straight keep them at a distance – don’t let them cause problems that you will be left to solve

  • Think forwards! People can and do recover, and many relationships do flourish

Please, get professional help and listen to what people tell you about the changes in your brain. Your brain is not ‘who you are,’ it is a tool ‘you’ use.

Long-term outcomes

A loss of insight will impact how well you recover from a brain injury and how long it takes. Without help, progress will be slower, and you are likely to experience heightened problems with learning, communication, and relationships, sometimes for many years.

The loss of insight will also impact how your brain stores information. Many people report becoming aware later on of the gaps their problems with understanding have created in their awareness and memories over the long-term. It is much more challenging to understand the world around you fully and to learn new information when your brain isn’t processing and filing personal additions to event details.

Dealing with a loss of insight can worsen memory problems generally and make it much harder to remember things or to bring pertinent information to mind. Very often, people forget to ask themselves questions and will find that they get stuck in a way of thinking or are unable to progress thinking. You will likely need to teach yourself to ask fundamental questions again as this may no longer be automatic. For example, when considering what we are thinking, we can expand how our inner narrator works and increase self-awareness understanding by asking ourselves things like:

  • Is this true?
  • Is this how I really feel?
  • Have I fully understood this?
  • Do I need more information?
  • What would I have thought about before?
  • Does my thought reflect who I think I am?

You may find it hard to remember to do this and to answer these types of questions. You will need to persevere and practice to re-expand your thinking and self-observational skills.

Please, get help from a neuropsychologist if you think anything on this page relates to you.