The challenges which affect persons with acquired brain injury (ABI) are not always visible. We may look exactly like you – we are stylish, and on really good days in quiet environments we can manage to stay focused.
ABI is the result of either a traumatic injury due to an accident or non-traumatic injury due to a stroke, brain tumour or substance use. Often when people hear “brain injury” the first thing that comes to their mind is intellectual disability.The truth is most people with ABI retain their intellectual abilities, but the brain injury may affect thought processing, making it difficult for a person to express themselves. The extra energy required for simple daily functions can leave our body and brain fatigued. No one day is ever the same.
While the effects of ABI and the challenges each person faces are unique, one thing we all seem to have in common is the (stupid) things people often say to us. From the perspective of someone who lives with ABI, here are six things you should never say to someone living with a brain injury:
Yes, the person may very well be “lucky” to have survived their accident, but when faced with all the challenges of the aftermath they may not see it that way. Or they themselves may be quite aware of how blessed they are to have survived and are doing their best to move forward. Some days may be easier than others. On the not-so-easy days or when someone is struggling with how blessed they are to be alive instead of saying “how lucky they are to be alive” tell them how much you admire their strength and persistence to overcome their current situation.
Whenever I hear this, I shake my head and think, “Seriously you just said that!” It is often said as if I made the choice to not work. Being able to work provides one with a sense of pride and ability to provide stability and independence for the future. This privilege is often taken away from someone who is living with a brain injury. When someone is forced to stay home due to pain and exhaustion it is no holiday. So, when you feel like you need a break from your job, don’t envy the person who is forced to stay home because of their ABI. Anyone who has lost control of their income potential will tell you they would gladly give up their forced non-working status to go back to work.
I have a brain injury, which is a hidden disability. It is not a cold or a flu. I am not going to be coughing, running a fever, have watery eyes, throwing up or blowing my nose constantly. Just getting dressed and daily personal hygiene tasks can deplete me of energy on some days, making it a challenge to do much more beyond “not looking sick”.
Depression, fatigue, chronic pain and apathy are very common symptoms of brain injury. These feelings affect one’s mood and ability to process information, deal with pressure and handle stress. They make it harder to do everyday tasks, much less handle extra activities.
Brain injury survivors require significantly more rest than the average person, which is often mistaken for laziness. This couldn’t be further from the truth, since our drive to exceed our energy threshold results in over-stimulation, which can leave us completely depleted, leading to setbacks and sometimes manifest as physical illness.
Sometimes in the middle of a conversation (for me, especially emotionally filled ones) I need to take time out. So if someone with a brain injury tells you they need to stop while talking to you, know that they NEED TO STOP NOW! It’s not that they are trying to avoid the subject, they simply need to take a break from “all the thinking” to process the conversation. Pushing the person to continue will only result in their complete exhaustion and a possible melt-down, which may set them back from being able to continue with any further discussion on the subject (or anything else) for days or longer.
Finally, brain injury survivors often have a really hard time with a change of plans. There is a lot of thought which goes into planning a day with non-routine or extra activities. The energy it takes to mentally process a last minute change of plans can zap one’s energy, which is often mistaken for not being flexible.
Unless what a person is about to do is going to pose risk to themselves or others, allow them time to complete a task. Tasks that once took seconds may take minutes or longer to do. Remember we are retraining our brain, and it takes time. Jumping in and taking over the task will trigger a sense of inadequacy, reinforce loss of independence, and may be viewed as being controlled. Patience is extremely important.
Limiting exposure to situations or environments which consist of loud areas, multiple people conversing, and excessive background noise is a coping strategy many people with ABI use to help prevent brain overload. We are not trying to be difficult or anti-social, we are just trying to avoid triggers that will over stimulate our minds and result in exhaustion. This is a survival mechanism, not a behavioural one. Stop making us feel guilty because we don’t want to attend the rock concert and come up with social activities that will not cause sensory overload.
Now that you are aware of how your words can impact someone with ABI, I hope you will choose them more carefully. And know that supportive words of encouragement go a long way in any situation.