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Rural gay man with brain disease not feeling heard

Mc_fluffy
Community Member

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

 

I'm new here.

 

As a gay man in a rural area I feel left out not only for my sexuality, but also due complex chronic health issues.

 

Brain disease, frequent seizures, lupus, bone issues that result in frequent broken bones.  I feel invisible.  My health means I cannot drive so need to travel by bus 8 hours for medical appointments.  

 

Recently I attended a GP in our town and was yelled at in the waiting room for being an AIDS carrier in front of people waiting.

 

As someone who has a physical reactive, responsive 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 recently 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 responses 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.

 

I need a psychiatrist, however they are like hens teeth.

 

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

5 Replies 5

Mc_fluffy
Community Member

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

 

As someone who has a physical reactive, responsive 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 responses 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…

Ggrand
Community Champion
Community Champion

Hello Dear Mc_fluffy,

 

A very warm and caring welcome to our forums,

 

I am so sorry your struggling through so much physical and mental unwellness…and what happened to you at the airport, having someone videotape you and then upload it for public viewing is so wrong and disrespectful in so many ways…it is just so wrong, some people can be so cruel…I am finding out that people will do just about anything to get views/likes on social media even at the others persons hurt…

 

I know you said no response is necessary but I wanted to let you know that you are being heard here and I’m listening along with many other community members…Please talk here anytime you feel you need to vent or have a chat, we are here for you to help support you the best we can…

 

My kindest thoughts Dear Mc_fluffy, and if it’s okay a gentle caring little hug..

Grandy..

quirkywords
Community Champion
Community Champion

Mcfluffy

I know you said you do not need a response but I feel outraged that in 2024 you have been treated so appalling. Can you contact a health organisation that advocates for consumers. 
Thanks for being brave and honest.m

Mc_fluffy
Community Member

Thankyou 

There really isn't an issue to report.  It is an appropriate response for fed police to treat any incident, even medical, as a possible threat or distraction for a threat.  This a good thing.  The online stuff is much harder, when posted it is almost impossible to remove other than a forensic process.  No social media company will do this.  Unfortunately, this stuff is just suck it up princess. Thankyou for the acknowledgement.