Skip to main content
Forums Home
Illustration of people sitting and standing

New here?

Chat with other people who 'Get it'

with health professionals in the background to make sure everything is safe and supportive.

Register

Have an account?
Login

cancel
Showing results for 
Search instead for 
Did you mean: 

Something’s not right

McFluffy
Senior Contributor

Physical brain disease and not being heard

This is not needing a response, rather is vent into the digital universe. 

 

As someone who has a physical reactive, responive brain, I feel neglected, ignored, and patronised in many ways.  Sometimes the physical changes in my brain result in socially unacceptable physical responses.  A seizure in public will most likely result in urinating and pooing myself.  A recent seizure in an airport was treated as if a threat and Fed Police activated.  While being treated in soiled clothes by emergency responders and carted off to ER. Beyond that there are additional issues of significant injuries and scaring the heck out of nearby strangers.  Gawkers and busy bodies, I have found videos of myself seizing and being treated on the internet.  Often seizures or uncontrolled physical changes in brain responses can result in visits to the ER and run the risk of being placed in an induced coma or at the extreme death.  A different seizure not long before resulted in fractured vertebra. 

 

Recovery can take hours, days, weeks to become lucid.  

 

I am finding it increasingly difficult to be cordial or appropriate when people offer dismissive, patronising sympathies or support… “focus on the good things… it will be alright… etc”.  It is not good, and it will never ever be alright!  Those of us with severe structural brain differences or decline need to look at these issues straight on, directly into the face.  Trying to offer glib responces makes it worse.  Damage to the brain can result in learning and adaptive difficulties, being compared with causes harm and is deflating.

 

I feel my concerns of mental “emotional” welfare is being swamped by other forms of expression or needs. 

 

Again this is not needing a response, just venting and shaking my fists into the sky…

3 REPLIES 3

Re: Physical brain disease and not being heard

@McFluffy, I am sorry you have to deal with this. People can be A-holes, including me, with or without knowing it. I just wanted you to know that if you ever want to vent, you have a non- judgmental ear here.

 

I am here to support you, if you want or need it. 

Re: Physical brain disease and not being heard

@Miss-wish not intended as a reference to anyone.  Just shaking fists at the sky.

Re: Physical brain disease and not being heard

@McFluffy I know and I'm  willing ear, sometimes it's better to shake your fits and know someone is listening 😊

Illustration of people sitting and standing

New here?

Chat with other people who 'Get it'

with health professionals in the background to make sure everything is safe and supportive.

Register

Have an account?
Login

For urgent assistance