One of the most frustrating aspects of living with the effects of brain injury is trying to get other people to understand how you are feeling and how much you are impacted by cognitive, physical, emotional and behavioural effects.
Your friends and families may not be familiar with brain injury in any way. Therefore, they may make some comments that make you feel hurt or upset. They mean well, but they don’t know what you’re experiencing. The only way they will know is if you tell them. You can do this by creating an atmosphere of open communication and dialogue. Take the opportunity to educate them about your injury and how you are impacted. Knowledge leads to understanding and even though it can be frustrating and take patience, it is important to keep those connections with friends and family.
Some examples of comments/questions you may hear from family or friends. Remember, your friends or family members mean well and want to know how to talk with you.
- “When will you get better?”
- This can be hard to hear. No one wants to live with memory loss, fatigue, pain, or any of the other effects of brain injury. Unfortunately, brain injury requires a lot of time, patience and commitment to rehabilitation. You will never be the same as you were before the injury. This is something that both you and your friends/families need to talk about. Brain injury recovery does not happen overnight. You are continually recovering and adapting. Let them know how they can help and support you. Tell them what you need from them and keep them updated as it your needs change over time.
- “Glad to see you back to your normal self”
- Bran injury is called the invisible disability because many symptoms of brain injury aren’t immediately obvious to others. What your friend or family member doesn’t know is that to prepare to see them, you have slept for hours and will then need to sleep again to recover. Or that you spend most of your time isolated from the world to cope with your symptoms. So, while to them you look ‘normal’, you’re far from it. You may feel hurt and frustrated by the comment: but they won’t know what you’re experiencing if you don’t tell them. Let them know how much physical and cognitive fatigue impacts your daily life. Ask them to listen and ask questions about what you are experiencing and what “normal” looks like to you.
- “You never come out or hang out with us anymore”
- Bright lights, loud or multiple sounds and other stimuli may be hard for you after your brain injury. Traditional environments for socializing can cause you to experience symptoms of your injury or make those symptoms worse. You may be experiencing increased social isolation, and it’s frustrating when someone says something like this. But if they don’t understand what you’re going through or how to help them. Let your friends or family members know what types of environments don’t work for you at the moment. Socialize in smaller groups or one on one at your home or a place you are comfortable. If you can control your environment, you can control your symptoms and get more enjoyment from being with your family and friends.
- “I feel like you are different, and our relationship has changed”
- You are dealing with a whole new set of circumstances than before your brain injury. You may be different, and that’s okay. But it can be hurtful to hear someone say something like this. It can cause you both to dwell on the past when you should be focusing on the future of your relationship. Inform your friend or family member about how you’re feeling. Through communication and continued engagement, you can forge a new relationship path forward. “
- “Weren’t you listening? I already told you that”
- You were listening, but you may be experiencing memory loss or trouble focusing after brain injury. It’s a common challenge and one that can be so frustrating for both of you. While you can use all sorts of tips and strategies to help you assist with memory loss, you need friends and family to be patient and not critical. There is no quick fix to memory impairments, so making sure family and friends are aware and understanding of your challenges will reduce frustration on both parts.
- “I don’t want to upset you. I feel like I am always walking on eggshells”
- This can be hurtful and comes from a lack of knowledge about the impairments caused by brain injury. You may be experiencing multiple symptoms of brain injury that could impact how you interact with others. For example, you might have emotional lability (which is extreme emotional reactions such as laughing or crying excessively and sometimes in inappropriate situations), chronic pain, behavioural challenges, and frustration over the changes you have gone through and that people don’t understand them. All of this is common for brain injury survivors, and it’s important to communicate this with your friend or family member. There may be times when you both get upset. By being open and honest about what’s happening, you will both be able to communicate with more consideration and thought.
These are just a small sample of what you may hear from your family and friends as everyone adjusts and adapts. They are not trying to be offensive: they are trying to be supportive. Explain to them why comments like these are hurtful and help them understand how to communicate with you in a more positive way.
Other ways to educate family and friends
Ask them to visit the Family/Caregiver section of this site and ask them to spend some time looking through the information so they can become better educated about the complexity that is living with a brain injury.
- Send them the link to the article on What not to say to someone living with a brain injury