When I’m going about my normal day, (who am I kidding, with a brain injury there is no such thing as a normal day) I have know idea if the people who I walk past have a brain injury too. It is the invisible disability. But that can make people’s expectations of you too high.
I don’t know if it’s because modern life is so fast, but there seems to be an increasing habit, of people not bothering to use full sentences.
That’s fine in a operating theatre when the surgeon says “scalpel”. It’s easy to guess they are asking the assistant to pass it. It might not be polite, but when speed could mean life or death you can forgive dropping the courtesies. In the real world, putting the word “please” at the end might soften the blow, but it doesn’t add any more context.
“Phone please“. Do you want me to pass you the phone, or make a phone call.
People seem to assume that the rest of the words are wasted. They think you can fill in the gaps by reading the situation. Well I’ve got news for you, sometimes I can’t!
Sometimes we might not want to always talk about it and be forever explaining ourselves.
One day I really had to go to the toilet urgently as my bladder wouldn’t give me much notice. It was a hospital (which I find hard to navigate at the best of times.) There was a separate disabled toilet, but I couldn’t see where the general ladies toilets were. So feeling like there wasn’t time and therefore leaving me no choice, I used the disabled toilet.
I know these are designed for wheelchair users. I wouldn’t normally use one as they should be kept free for them. So I was deeply embarrassed when, to my horror, as I exited there was a wheelchair user waiting. The knowing look I got from them made me die inside, so I just shyly smiled and held the door open for them. I felt like a criminal. If they knew my problem I’m sure they wouldn’t have taken issue with me using the disabled toilet. But as I can walk (or limp actually) on my own two feet, I was judged as being thoughtless and/or lazy. I have an invisible disability, my brain and bladder, you just can’t see them.
If another disabled person can look down on me, (so to speak, don’t write in pointing out that when I’m standing a person sitting down has to look up at me) what must the general public think? But my issues are legitimate and just as important to recognise. And I’m still trying to accept how things are different for me now. Believe me, there’s no one harder on me than myself. I didn’t ask to have an invisible disability. Please just cut me some slack.
Just because I smile, it doesn’t mean I’m fine. Even if you ask me “How are you?”, I’ll probably say “Good thank you, and you?”, as often people don’t really want to hear the real story.
I don’t want to wear a badge as my brain injury doesn’t define me. But I wish people were a bit more open minded as to what a disability is.
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12 replies on “Living with invisible disability, brain injury”
Hi Michelle
Was looking for your reblog button, but couldn’t find
enjoy the eve over there
c
https://headbraininjury.wordpress.com/2013/10/03/the-hidden-handicap-the-silent-epidemic-2/
https://invisibledisabilities.org/
Thanks I’m sure many will find this site useful
I think you may be overinterpreting the wheelchair user’s reaction. Disabled toilets are equipped for wheelchair users but there’s no hard and fast rule that they must be reserved for wheelchair users’ exclusive use. Indeed, in some premises the ONLY toilet is disability-equipped but intended for general use. There’s no expectation that a wheelchair user must never have to wait in any sort of line, if the queues at the normal toilets are lengthy. It’s important that these toilets exist, but that doesn’t mean nobody but wheelchair users should ever use them! It’s not like sticking your car in a disabled parking space! I’ve often seen staff urge able-bodied women to use the disabled toilet to get the length of the queue for the ladies loo reduced.
It’s normally courteous not to use the disabled toilet if you’re able-bodied, but that’s as far as it goes. Again, it’s NOT the same as occupying a disabled parking space. And wheelchair users also understand about invisible disabilities. I think it’s extremely likely the wheeochair user who was waiting for you to come out of the disabled toilet understood that there was probably a good reason for you to have used it. And even if they didn’t, come on. Being in a wheelchair doesn’t guarantee that you’ll never have to wait in line for anything.
Yes I imagine you’re right. I was probably just projecting my feelings of guilt on to her because I can be over sensitive.
Thank you for writing this, Michelle. My husband suffers from an anoxic brain injury, and I suffer from trying to remember that he is disabled even though he seems “normal” in so many ways. Many prayers for you and your recovery. Please keep writing.
Thanks Stephanie it’s always nice to know that I’m helping somebody somewhere.
Hi Michelle. Great article. I relate to you calling it an invisible disability. The world thinks I’m normal but since my accident I have disabilities. I am happy I am not the only one going through this 🙂
Unfortunately their are so many who have an invisible disability. People put so much emphasis on what they can see, that other things get missed.
Unfortunately there are so many with invisible disabilities. People put so much emphasis on what they see, that others get missed.
Well this really got me thinking! I identify as a person with disabilities however I actually have brain changes from childhood trauma. I choose to call this brain damage cos any scans of me would not look normal!
So I’d be interested in peoples thoughts…new research of last decade has clarified alot about aberrant behaviour and childhood trauma And I surely tick every box. God bless and prayers for your continued recovery.
Trauma is awful and you’re right that it does change how the brain develops. I’m not sure if scans would really see this without a “before” picture to compare it too as many of us who suffered an organic brain injury still get told that nothing “abnormal” showed up on the scan.