But You Look Good: Hidden Disability after Brain Injury

 

Hidden disability after brain injury. Divers underwater with boat above

Image by Chris Scott

 

Hidden disability after brain injury. What does it really mean?

Is it different from other hidden illness or disability?

Is it the person, or the disability that is hidden?

I have learned more than I realised from my visit to a Stroke Support Group along with the thought- provoking comments received after writing the visit up in last weeks blog.

From all this new questions arose, in particular more about invisible disability, or hidden disability after brain injury.

I have been using the term hidden disability after brain injury for many, many years and this week I realised it has become a kind of automatic phrase  – till now anyway.

So today I am sharing my exploration of the term ‘hidden disability after brain injury.’ Your thoughts, comments and questions in the Comment section below or to my EMAIL would be wonderful

 

What is Hidden Disability After Brain Injury

I sought out our past training manuals to see the actual definition I had been using:

“Brain injury is often called a “hidden disability” because the person may have no physical effects but behave very differently.”
Cognitive difficulties are often called the “hidden disability” because they may not be obvious but can have a significant impact on your behaviour and on daily life.”

For me it means those outcomes of brain injury that a person might not see, when they meet someone with brain injury. For example you usually see when a person’s leg or arm does not work, while you don’t see the cause of blurting; someone who is not able to monitor what they say – it is hidden.

 

Other Hidden Disabilities

I realised I have become more focussed on brain injury as THE hidden disability and conveniently forgotten the many others.  I found lists and lists of other ‘hidden disabilities’. The slide presentation at the end lists 111 hidden disabilities!

Looking for other sources I discovered work by the Centre on Disability Studies at the University of Hawai‘i on Hidden / Invisible Disabilities. As you can see in their list below Traumatic brain injury is listed, other forms of brain injury such as Stroke, Dementia, Parkinsons, are not.

  • Psychiatric Disabilities—Examples include major depression, bipolar disorder, schizophrenia and anxiety disorders, post-traumatic stress disorder, etc.
  • Traumatic Brain Injury
  • Epilepsy
  • HIV/AIDS
  • Diabetes
  • Chronic Fatigue Syndrome
  • Cystic Fibrosis
  • Attention Deficit-Disrorder or Attention-Deficit/Hyperactivity Disorder(ADD/ADHD)
  • Learning Disabilities (LD)
  • Medical conditions associated with hidden disabilities. Examples include short or long term, stable or progress, constant or unpredictable and fluctuating, controlled by medication and untreatable.

I would include all causes of brain injury including the early stages of dementia on such a list.

With many hidden disabilities and disorders, including Brain Injury some people will also have physical outcomes, and other people will have none.

 

Why Talk About Hidden Disability and Brain Injury:

For supporters of people living with brain injury some responses include:

  • For people new to brain injury it can provide a good picture of what the outcome of cognitive difficulties can be
  • It reminds you to be aware that difficulties can be more than physical. More than what you see.
  • It hopefully creates a Pause, before speaking to stop youmaking statements that diminish the difficulties a person may be having. Comments like: “But you look so good” “I cannot see there is anything wrong”.
  • It can help you to understand the impact of hidden disability for the person.

People living with a hidden disability might say “Why bring attention to the issue if no one can see it?”

Fair enough, and it may help minimise stigma and judgement.

Here are some thoughts on why a person might be encouraged to talk about it:

  • Sometimes others may not realise a hidden disorder is the reason for the limitations a person is facing.

Becoming impatient because you are not able to concentrate, and remember lessons at school but the teacher does not realise so does not provide the structure needed.

  • A person may choose to ignore their disability because it is not obvious.

Becoming increasingly forgetful and suspecting dementia, but telling no-one not even your family so the need for support is not recognised.

  • When something is not obvious to others, the best way to respond might also not be obvious.

Becoming angry very suddenly for no apparent reason can push friends away. They don’t see why it is happening, and don’t know what they can do.

  • There may be strategies, treatments, approaches available that are not being used because the difficulty is not recognised by you or others.

Not being able to hear well yet not getting tested and treated because no-one else knows.

  • A person can start to feel invisible because they are not understood, or accepted as a whole person.

 

The Challenges of Living with A Hidden Disability

The following quote echoes what I have heard experienced by many people after brain injury:

“… one of the major problems faced by people who have hidden disabilities is that often other people don’t see the disability and often don’t believe them. Frequently we are told that we don’t seem disabled. For many people they feel that the foremost discrimination anyone faces is to be disbelieved. Hidden disabilities can also cause difficulties because of the attitude of others due to fear or ignorance as people fear what they do not know or understand or what they can not see.  (Preliminary report Compiled by Stephen Brookes Rachel Broady and Lena Calvert (NUJ Equalities Officer) . National Union of Journalists, Disabled Members Council 2008 United Kingdom)

This quote and other interesting information on hidden disabilities can be found in “Hidden-disabilities” disabilities” a 2008 report prepared for the National Union of Journalists in the United Kingdom.

A number of challenges for the person who has a hidden disability are identified in Invisible/Hidden Disabilities prepared by the Centre on Disability Studies at the University of Hawai‘i:

  • “One is unable to “see” the disability.
  • There are no “visible” supports to indicate a disability such as canes, wheelchairs, use or sign language used.
  • It is a permanent disability that they cope with on a daily basis.
  • The disability may be managed through medication or behavior such as in the case of diabetes, asthma, epilepsy or psychiatric disorders.
  • It needs to be a documented disability in order to receive reasonable accommodations under the ADA.
  • The person is in some kind of physical or emotional pain.”

 

The Dilemma of Living with a Hidden Disability

The following provides some further thinking about the dilemma of living with a hidden disability:

1) To disclose or not; the advantage and disadvantage (though this may seem an odd way to look at it):

“It may be that the advantage of having a hidden disability is that one has at least a degree of choice in whether or not to disclose it to others and when to do so. The disadvantage being that when one does make that choice to disclose it the will tend to be more difficulty having that disability accepted as being “real”, because of the prevalence of what could be called “The doubting Thomas” syndrome applies here (If I can’t see it, it isn’t there or can’t exist at all.)”  (Preliminary report Compiled by Stephen Brookes Rachel Broady and Lena Calvert (NUJ Equalities Officer) . National Union of Journalists, Disabled Members Council 2008 United Kingdom)

2) To be recognised as having a disability or not

“People with hidden disabilities often do not feel like they belong within the Disability community because they are not considered to be “disabled enough” to fit into the group.  People with hidden disabilities are caught between not being fully accepted as people without disabilities and not being recognized as having “real” disabilities. Take a look around.  Is there someone in your personal life, in your class, on our campus that is just trying to fit in and wants to be accepted for who they are?  Do we treat that person with the dignity and respect that they deserve?  What can we do to make a difference in this person’s life? Imagine yourself in their shoes, how would you want to be treated?  (Preliminary report Compiled by Stephen Brookes Rachel Broady and Lena Calvert (NUJ Equalities Officer) . National Union of Journalists, Disabled Members Council 2008 United Kingdom)

3) The tendency to be judged because of how we look and not understood for the difficulties we might be living with

“Unfortunately, people often judge others by what they see and often conclude a person can or cannot do something by the way they look. This can be equally frustrating for those who may appear unable, but are perfectly capable, as well as those who appear able, but are not.” (Invisible Disability Association)

 

As Supporter What Can You Do

  • Take great care not to judge. Remember that saying “Don’t judge a book by it’s cover” – never more true than here.
  • Don’t be surprised by what you see. Expect the unexpected.
  • Think before you speak. Take care not to say things that may be hurtful or unhelpful like – “You seem fine to me.”   Revisit 9 Things Brain Injury Supporters Should Not Say to a Person with Brain Injury
  • Listen to what the person is telling you about their strengths and difficulties and respond accordingly. Just because you cannot see it does not mean it does not exist.
  • Understand the potential outcomes of brain injury xxx and link that knowledge with what you observe.  A good strategy to minimise being judgemental or making assumptions.
  • Consider all sides of the dilemma that can occur. Work out ways you might best you resolve or minimise these. You might want to revisit how to approach ethical dilemma
  • Support others in the community to understand what a hidden disability means along with  a better understanding of what brain injury means

More Interesting Reading about Invisible / Hidden Disability

The Invisible Disability Association  has publications, videos and further information on invisible / hidden disabilities.
Invisible/Hidden Disabilities presented by the University of Hawai’i  online professional development training has further information as part of their Teaching All Students Reaching All Learners” project.
“What’s Wrong with You” provides more information on hidden disability including an extensive list of the types of illness and disability that are “hidden” (111 of them)and a long list of well-known people who lived with a disability.

Whats Wrong with You? Hidden Disabilities and Diversity in the Library Workplace National Diversity in Libraries Conference: From Groundwork to Action.

 

And Finally

You know those times you think “Just one more and I will finish.” I did that when researching ‘hidden disability and brain injury’.
My final “just one” truly was the very last, and took me back to the beginning for a rethink of terminology. DiversityInc.com. This quote set me thinking all over again:

Never say “hidden” disabilities. Say “non-visible” or “non-apparent.”Many disabilities are not apparent, such as serious illnesses or chronic health conditions, sensory limitations, or mental-health and learning disabilities. When referring to these disabilities, avoid using hidden, as it has negative connotations, implying purposeful concealment or shame.

What are your thoughts?

 

 

 

 

17 Responses to But You Look Good: Hidden Disability after Brain Injury

  1. Cheryl Green July 31, 2014 at 1:15 pm #

    Fantastic post, and I’m so glad you put that last one there at the end because I was going to write something similar! People have told me that I *should* hide my issues, and I often get praise for how well I pass. People think they are complimenting me when they tell me they can’t believe I’ve had a TBI. They think I haven’t been through this because I’ve recovered a lot but also because I do hide some things about myself to avoid their judgment. I do not believe I should have to hide my impairments, but I get exhausted by having to take care of other people who flip out when they find out I have access needs. So I hide them. My preference is “non-apparent.”

    Your post is so thorough and gives such great insight into the dilemma!!

    • Melanie Atkins August 1, 2014 at 3:30 pm #

      Hi Cheryl, Thanks so much for the feedback and comment. I must say when I set out to write this I thought it was a straightforward simple explanation of what is “hidden disability”. I did not realise at the outset that I was stumbling through a complex dilemma. Wow, I learned so much and that last website I found really got me thinking. “Non-apparent” does seem a much better. term. I wonder what other terms are around – anyone want to add ideas and preferences?

  2. Amanda Nachman August 4, 2014 at 12:32 pm #

    Melanie, Thank you so much for putting this out there. I hope you don’t mind, but I posted the link to it on my brain injury awareness page, WhoAmIAgain? on Facebook. This has been such a struggle for me, and a conversation that needs to happen on a broader scale. I Really appreciate how much detail and thought you put into your article. I used to tell my doctors who thought I was too smart or articulate to have an MTBI, that I may be slower now, but I’m not stupid. The community outside the survivor network needs to be further educated on how to communicate with us. And, on the other side, how do we help them to be comfortable enough with us that they don’t feel they need to tell us,”Well, you look good.” Thanks again!

    • Melanie Atkins August 4, 2014 at 5:40 pm #

      Amanda you are most welcome to share this article, I am so pleased it has created conversations. I am also pleased that I too have learned much from writing the article and receiving comments.

  3. Ric Johnson August 5, 2014 at 3:16 am #

    Thanks Melanie, another great post. I think I do like “non-apparent” as the key phrase and that’s what I’m going to use from now on. Reading other comments the line of “The community outside the survivor network needs to be further educated on how to communicate with us” is interesting, but it begs to follow with “how can we survivors do to communicate with others “. Telling an employer that we have a special need or access is one thing, but how about the general public? Yes, the side-effects of my injury is non-apparent, so what should I do when walking into a restaurant? First, I hear loud music from the speakers. Second, hear a group of people laughing & joking in one part of the room. Third, hear people on their phone or just talking with their fiends when waiting for their table. Yep, I hear all of that, because I cannot filter out and/or cancel background noise. Sure, I could I put in ear plugs but then it’s harder to hear the friends I’m dining with so I do not. When asking for a table I do tell the host where I would prefer my table to be located. And, to make sure she/he understands, I tell them I had a brain injury.

    When I waiting for my table, I stand as far away from the loudest noise makers as possible, and most of the time, with my back to the wall.

    So here’s comes the host and shows me to my table. First, is this where I asked to be? No, it’s not. Second, do they ask if this table is OK? Maybe, maybe not. Third, what should I do? First, I glance around the room and then say “I asked not to be in this area”. The host then says, “this is the only open table”. That’s OK, I reply, I only have one brain so I’ll wait for next table. Walk back to the lobby.

    When waiting for my “preferred table”, I make sure to keep in contact with the host when quests are leaving the restaurant, try to be close enough to the host station so they don’t forget about me & my brain injury. I’ve never been asked about my brain injury and don’t expect to be.

    Do I wear my brain injury as a badge of honor? Nope. But I refuse to hide it. When my traumatic brain injury needs to be explained it’s because it is non-apparent. I don’t expect John Doe to see me coming and know, but traumatic brain injuries will continue to be called the silent epidemic unless we survivors speak out.

    Keep up with your great work.

    • Melanie Atkins August 5, 2014 at 4:44 pm #

      Thanks Ric. You not only gave me the idea for this article in the beginning, you have now given a great example of what it is like in real-life. Any person not understanding what ‘non-apparent’ means would do well to read your example of going out to a restaurant. Sometimes it helps people to understand when they hear a real life story. Thankyou so much again for sharing. Regards Melanie

  4. Sally May 31, 2016 at 8:00 pm #

    Thank you for your post. I have a son with a TBI. I feel like I am forever being judged as “making excuses for him.”

    • Melanie Atkins June 7, 2016 at 5:55 pm #

      Sally it is lovely to hear from you and to know this is useful. It is difficult when brain injury is often so poorly understood and invisible. Thankyou Regards Melanie

  5. Teresa June 29, 2016 at 2:23 pm #

    It has been 9 years since the TBI and ptsd. I find that people that did not know me before the MVA treat me kind and are respectful but my siblings treat me (pardon) Retarded. As if I am not in the room when they converse. As if I am there but they do not want me to be part of the conversation.
    They saw how bad I was immediately after the MVA and it seems they can’t see me as I am now. Not even equal to a person in the room. People don’t realize or maybe care that I have a heart and brain and they are hurting me or pushing me down instead of giving me a hand up. I don’t even try anymore and go out of my way to keep my distance. No one likes to be treated Stupid. How should I deal other than what I do now- walk away from anger and feel human.

    • Melanie Atkins July 19, 2016 at 3:09 pm #

      Hi Teresa, Thankyou for sharing your experience. Unfortunately your experience is not uncommon as people try and understand brain injury and the changes that happen. This is all happening when everyone is distressed and often grieving. Walking away so that you don’t get angry is a good way to manage. Sometimes it is can be helpful trying to talk about what is happening when you are calm and not distressed. Education about brain injury is a way to change people’s understanding – maybe some information about brain injury or talking to someone who understands.Thankyou again. Regards Melanie

  6. Mathew Hill July 21, 2016 at 11:31 am #

    Melanie,
    I really enjoyed the article. Your “final” paragraph was genius! “non-visible” / “non-apparent”. Thank you.

    I am a TBI survivor and a hopeful speaker on TBI recovery and lessons in life from TBI rcovery applicable for all people. I am in the middle of writing a comprehensive article on my TBI recovery and presentation content. I am also a recent Therapy Assistant graduate and my goal is to work with TBi survivors.

    Can I send you a copy of the article when I am done?

    Best,
    Mathew Hill

    • Melanie Atkins August 11, 2016 at 4:56 pm #

      Hi Mathew – it is great to know you enjoyed the article. Yes please send me the article when you finish. Good luck with your vision for speaking and supporting others.
      Regards
      Melanie

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