Hidradenitis Suppurativa patients hide for 8 to 12 years on average

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HIDE, ISOLATE, GUILT, SHAME

“Please do not call me crazy”
r.bercume

As Hidradenitis Suppurativa patients no one can really know what it means for us when we use the language of
HIDE, ISOLATE, GUILT, and SHAME to explain what the dark and silent years have been like for us when alone.

Alone in utter ignorance, terror and fear.

The gravity and weight of what those words mean to us just cannot be understood by others, or even understood ourselves.

There is no precedence in any other disease, illness, or syndrome to compare how we as HS patients are challenged.

The level of both physical and mental trauma we endure daily for decades is very much real for us. Those of you who have known us over the years, and did not know of our challenges….

There is a good reason for that.
It is because we would not let you.

Bubble.

It is because you would not believe
a word we would say when attempting
to explain the unexplainable.

Help.

It is because you would make us wrong as we make ourselves wrong.

Stop.

You do not have to believe my story here as the truth if you are not a patient.

Butt.

Can we pretend for a few minutes if I try to keep this short?

Bus. But.

Can we just pretend it is story time for a few?
Can we just pretend that I can get a line down for this story without breaking down in tears?

But, can butt.

It is just simply my reality and it will never change. At least a reality for me in this story for you.

Only. One more day.

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Good thing I am a real good writer of stories.

Uri. Disco. Geller. Fraud.

To be vocal and openly public about absolutely everything in my life….

Specifically, this work I do now is challenging.

For the last 20 years and before this past May, it was something much more than challenging.

HIDE, ISOLATE, GUILT, SHAME, PERIOD

Storytelling has shortened my life significantly by being a life of lies. Living a life of constantly watching your eyes to make sure you did not see the real me.

OXFORD.

You knowing the real me…
If you did discover that I was just a story and there never was a real me…
That there never could have been a real me….

If. Over. Peace.

I was born into this book a SECRET of stories.
If you knew that I was a SECRET, everyone would have gone away.

You would have gone away in my dreamy SECRET.
Left me while SECRETLY dreaming about being a nonfiction story like you and everyone else that is not like me.

Nothingness..

I never had a life.
You finding out that I was only 
a story and not capable of ever being of this universe would have meant you caught me watching your eyes.
You caught the real me 
while you were watching my sleeping eyes watch your dreams, and your dreams, while you dream.

Your dreams are blue. wow.

I got caught once.
I was in a relationship at the time 
for eight months.
Life was good 
and I was SECRET in all caps, as I have never been able to spell LIFE correctly.

Spinner.

It was not in my vocabulary.
I needed practice at creative writing obviously.

Boardgames.

I remember reading that page of our story that said those exact words.
I will have to get back to you on 
The proper sentence structure and spelling of that page in our story later.
Get back when you’re 
not watching my eyes read the page to avoid yours.

Bored with games. Dominate.

It is a SECRET right now. I hope you do not mind.

I had this dream once. I was in Japan.
It was 
August 6 and everything was black and white.

Greek temples in ruin would fall from the air.

NO ESCAPE FOR THE 1%.

When you caught me having a secret from you and confronted me I dropped my laser-like 40-yard stare from your eyes.

I knew it was coming and I was caught.
I felt nuclear.


Destruction. Finality.

Why for 8 months did I lie about an STD?
I must have been 
dreaming because you had a shit eating grin on your face like you felt sorry for me having to keep secrets.
It was funny to you as I was just keeping a silly secret for no need.

Feeeewwww….Close one there.

THAT ONE ALMOST KNEW I WAS SECRET.

Shortly thereafter.
After only affording 
you lies as only SECRET can deliver..

You delivered me 4 things.

A girl, a boy, a marriage, and a divorce.
Once Google cured my STD and replaced it with a family secret, you try to take my girl and a boy.

Good thing I enjoy painting pictures.
I do not care if anyone does not care for modern art.

HIDE, ISOLATE, GUILT, SHAME, PERIOD

Everyday; all day and night we think about this disease.

If not on guard and carefully prepared for it, our own reactionary behavior to even a simple thought fires off trauma on autopilot without choice or control.

We knew that since our first day as a child when we experienced inversa for the first time.
Then that as the last experience as a child we were ever be afforded came the profound loss.

Our bodies opening up for the first time in mystery and terror.
A new some kind of emotion that we experienced for the first time replaced everything we had ever know.

HORROR. NOTHINGNESS

Our heart will drop as if it was broken by the love of your life with a thought if we cannot have control.
We are reminded constantly that we have no life and never will be afforded one like others.

Anxiety makes sure our heart stays nice and strong for a while.
Metabolic issues we know nothing of could catch us in that heart someday to silence it.

Maybe our liver or kidneys.

Maybe Diabetes or something else which we know about and can understand will become familiar eventually.
That is and would be refreshing and no big deal.

Something familiar is easy to deal with when clarity is something available to work hard for.
These other things we could never see as related to our disfiguration.

Child’s play!

Wait, what is that like?
Someone, please tell me?
I can’t remember being one.

I do love seeing my children live within a ZEN-like universe while they are or have been young.
I think I remember mine through them.

Who knows, it is all mixed together.
Who cares really if I know who or what I am anymore, anyway.

My kids are amazing and live in a blue and vast world ready for them to grow into and dream of blue effortlessly.

Good thing I spent 20 years hiding everything from everybody.

People who know me might have realized they do not know me at all and I am a liar and coward – damned, doomed and rotten.

Everyone I know may, or could find out that I will never see a blue world, and it is not very big for me.

In fact, it is kind of hard to breathe in here.

The massive scarring and open wounds that remain active and producing for years without healing are always present in both mind and body.

Our childhood is obliterated in literally seconds that first time.

Never to return.

Ignorance is bliss, and we have no luxury ever afforded of ignorance in our lives again.

Nothing exists to compare what both the mental and physical consequences of what this disease does to a human being over decades on this planet.

Decades we spend in silent secrecy while we hide the horror movie we think we are.

We cannot ourselves even explain what that has done to us.
We do try and compare notes when afforded access to another patient and learn that we are not alone.

A luxury afforded to patients like us here in these support networks.

We do not even know or have clarity as the years pass. Memories of simply being human, or anything other than a rotting from the inside out as damned human being become lost.

Not being human becomes and is are our reality as we have never found anything or anyone like us. Historically our search for answers ends in a failure that has been inevitable.

When we finally pick ourselves up enough to seek answers,we find  nothing to compare it to, then we stop seeking.

We stop seeking because we realize we were right.
Memories of simply being human were just our imagination.

How ridiculous for us to think otherwise.
We are damned, but definitely NOT HUMAN.

We know of no human in our lives ever damned as we have been – it’s just not possible or even a thought otherwise.

We do not ever get a break from this disease once it onsets. Time spent in between major events is a life of perpetual anticipatory hell on Earth as well.

The constant fear, anxiety, and daily trauma just anticipating the next time we will return to something most people could not even comprehend happening to their own bodies is our reality. Predictability is not a question for us. The first time we got hit hard by this disease, it destroyed our concept of the world as we knew it to begin with.

That first time our bodies opened up for no reason at all as children, this disease destroyed everything we ever where, ever going to be, or ever were going to know.

We never get a break from HS, even in between physical symptoms.

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We never had a chance to learn that from event to event anything would be normal or predictable – it never is.

As soon as we think we have something figured out, this disease that we “are” over a few short years simply reinvents itself all over again.

There is nothing in the present, the past, in medicine, in science or sociology in comparison to HS severity of both the physical and mental consequences for patients.

 


 

HIDE, ISOLATE, GUILT, SHAME
  “Please do not call me crazy”
r.bercume

v1 03.21.2016 | v2 04.03.20167

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