6 things you should never, ever say to a brain injury survivor

BY: CELIA M

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.

http://cdn.someecards.com/someecards/usercards/MjAxMy0yOWQ1NTdmNjk4NzcxZDhi.png
Photo credit: someecards.com

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:

You are lucky to be alive-3

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.

I WISH I DIDN'T HAVE TO GO TO WORK

 

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.

 

YOU DON'T LOOK SICK

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”.

photo credit: Neecy Grace
photo credit: Neecy Grace

let's go do-2
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.

let me do that fo ryou

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.

 

let's go do

 

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.

https://juliawillbefine.files.wordpress.com/2014/06/other-people-in-my-age-group.png
Photo credit: Juliawillbefine.wordpress.com

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.


 

Celia Missios
Celia M.

Celia is an ABI survivor who is dedicated to helping others move forward in their journey and live the life they dream of. She is the founder of the internationally read blog High Heeled Life – inspiration for living a luxurious and balanced life; featured author in Soulful Relationships part of the best-selling series Adventures in Manifesting; a Peer Mentor with BIST; a regular speaker for Canadian Blood Services – Speakers Bureau; certified Life Coach, certified Law of Attraction Practitioner and currently working on her Mind Calm Meditation certification. Learn more about Celia and be inspired: visit www.HighHeeledLife.com or www.CeliaMLifeCoach.com

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What does brain injury ‘awareness’ mean anyway?

By: MARK KONING

June is brain injury awareness month and the fact that a focus is being put on this acquired disability is wonderful! I think it is great to have a time frame where a lifelong injury, such as brain injury, is put forward so that it is a little more prominent in people’s minds. So that we pay a little more attention to the hardships and struggles, the success stories, the services rendered, the caregivers and the survivors. It is a time to listen to and respect one another, a time to discover and learn new things, a time to share and a time to make new and important connections.

photo credit:  Brain Injury Association of Massachusetts Blog
photo credit: Brain Injury Association of Massachusetts Blog

But I think the question is how far beyond the already existing brain injury community does any awareness go?

According to Wikipedia:

Awareness is the ability to perceive, to feel, or to be conscious of events, objects, thoughts, emotions, or sensory patterns. In this level of consciousness, sense data can be confirmed by an observer without necessarily implying understanding. More broadly, it is the state or quality of being aware of something.

And there is the trouble. Do see it? Did you read it? “… [W]ithout necessarily implying understanding.”

When it comes to an issue such as brain injury, just how aware can one be without understanding? The answer, in my opinion, is that you can’t be.

So when I refer to the above ‘community’ I am referring to brain injury survivors, the dedicated caregivers, the service providers, rehab workers, therapists, etc. Unless you participate, unless you have an open mind, unless you ask questions and listen to the answers,  are you truly aware?

Just because you know of brain injury, doesn’t mean you know what brain injury is.

I have lived with a brain injury for many years and I have had people tell me that they understand ABI, but then turn around and question my challenges when it comes to keeping up a quick pace, why I have difficulties retaining certain information, or why I would require certain accommodations.

I am also a caregiver to my mom who recently acquired a brain injury. I recall a time when someone said they knew of her injury yet couldn’t understand why she needed my assistance with communicating.

Awareness is great, but it unfortunately does not mean understanding. In fairness, I suppose brain injury understanding month does not sound, or flow, as well. But that is really what it needs to be – understanding – because awareness doesn’t quite live up to what is trying to be accomplished by having this month dedicated to brain injury.

So I challenge you to ask questions, to listen, to try and empathize and to keep an open mind. Let’s grow together.

Mark’s passion to lend a helping hand, offer advice and give back, has developed into a moral and social responsibility with the goal of sharing, inspiring and growing, for others as well as himself. His experience as a Survivor, Caregiver, Mentor and Writer, has led to his credibility as an ABI Advocate and author of his life’s story, Challenging Barriers & Walking the Path. Follow him on Twitter @Mark_Koning or go to www.markkoning.com.

This February – Love your brain + send a brain-o-gram!

This February, BIST is spreading some brain love.

We’ve created an online brain-o-gram you can send to everyone in your life – we’re talking family, friends, co-workers, neighbours, those Twitter followers you don’t really have a clue about …

we love your brain brain--o-gram

 

It’s simple: go to areyouaware.ca

brain-o-gram

Write a personalized message about living with brain injury, prevention or awareness.

brain-o-gramIf you’re on Twitter – spread the word and add the hashtag #areyouaware. If you’re on Facebook – share the brain-o-gram site!

So what are you waiting for? Go on, send a brain-o-gram to everyone in your life!

areyouaware.ca#areyouaware