What not to say to someone with a brain injury

One of the most frustrating aspects of living with the effects of brain injury is trying to get other people to understand how they are feeling and how much they are impacted by cognitive, physical, emotional and behavioural effects.

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You may not be familiar with brain injury or how the person wants to speak about it. Therefore, the things you say could be hurtful. The only way you will know how to talk about brain injury appropriately and respectfully is to talk to your friend or family member and use available education resources.  Create an atmosphere of open communication and dialogue with your friend or family member. Knowledge leads to understanding and even though it can be frustrating, confusing and takes patience, it is important.

Here are some examples of what not to say to someone with a brain injury.

“When will you get better? “
No one wants to live with memory loss, fatigue, pain, or any of the other effects of brain injury. Survivors want to get as well as possible as quickly as possible – but recovery does not happen overnight. It takes a long time, a lot of patience, and a lot of dedication to rehabilitation. It is important for families and friends to recognize this process. Your friend or family member is continually recovering and adapting to their brain injury. Let them know you are there to support them however they need and ask them how you can help them. Keep the dialogue going over time, as things may change for the person.  Symptoms can come and go and there may be times when they are doing well, and times when they will have setbacks.  Be their cheerleader through it all.
Glad to see you are back to your normal self “
Comments like this, while well-meaning, can be hurtful to the person with a brain injury. Brain injury is called the invisible disability for a reason. The person may look and seem normal when you see them, but what you don’t know or understand is what it has taken to get them to that moment. They may have slept for hours to prepare to see you and will then need to sleep for hours after to recover. Or that they spend most of their time isolated from the world to cope with symptoms such as light and sound sensitivity. Or that they have not opened their mail in weeks because the task is too daunting.

Ask your friend or family member instead how they are doing and really listen to the answer. Don’t make assumptions about their health and wellness based on how they look or act.

You never come out or hang out with us anymore”
Bright lights, competing sounds, and other sensory stimuli may be hard for a person after their brain injury, causing all sorts of symptoms or making symptoms worse. Group/family gatherings may not work anymore. The person may even find being with more than one person at a time a challenge. It is easy for individuals with brain injury to become isolated, partly because of their injury, but also due to lack of education and awareness of others about what they are going through and what they need. Ask your friend or family member what works best for them. Let them you know you still want to see them but let them control the environment. Encourage them to decide when and where works best so they can get more enjoyment from being with their family and friends. It is important for their recovery and their mental health to be socially engaged and valued.
I feel like you are different, and our relationship has changed”
They may be different. They are dealing with a whole new set of circumstances than before their brain injury.  Dwelling on those changes and framing them in a negative light will make both you and the person with a brain injury feel hurt. Your relationship may change, but that doesn’t have to be a negative. Through communication and continued engagement, you can forge a new relationship path forward.
Weren’t you listening? I already told you that”
Your friend or family member is trying their best, but memory loss and focus are common challenges after brain injury. This can be incredibly frustrating for them.  They may also need more time to process information and sometimes things get lost. Be patient and not critical. There is no quick fix to memory impairments. You can help them find tips and strategies that will reduce frustration for both of you.

“You are always so irritable now. I feel like I am always walking on eggshells”
This can be hurtful and comes from lack of knowledge about the impairments caused by brain injury. The person may have emotional lability, which is uncontrollable mood swings that can cause excessive/inappropriate crying or laughing. They may be dealing with constant pain that leads to challenges coping with everyday activities. Their brain injury may cause an impairment in anger management or they may not be able to always filter or control what they say. They may be experiencing immense frustration that everything takes longer than it did before the injury.  They may be frustrated and angry that people just don’t understand them anymore.

You can play a stronger supportive role by educating yourself on what they may be experiencing and asking them how you can help when they are frustrated or agitated.  Sometimes all you must do is sit and be quiet with them, so they know they have your support.

These are just a small sample of phrases that may be hurtful to people with brain injury. No one is going to say the right thing all the time and the path through living with brain injury has many bumps and roadblocks for everyone involved. The most important things you can do is be patient and supportive and educate yourself as much as possible about brain injury. For example: