Chronic Illness Life with Ehlers-Danlos Syndrome: Neuropsychology Take One

The neuropsychologist looked at me with all the typical body language indicating sympathy and said (paraphrased):

“Everyone one has a plate in life.
Your plate is overflowing.
As your plate’s contents grew,
some things fell off.
We will look at those things.”

It took me roughly 24 hours to process what exactly this meant. I tried to figure out the technicals around all the angles but only after around 16 hours of intermittent sleep could I clearly see this means I may finally get validation for a life of neurodivergence.

Neurodivergence is a newish concept I’m researching for better understanding and implementation into my theory of life. Per Wikipedia:

Neurodiversity advocates promote support systems (such as inclusion-focused services, accommodations, communication and assistive technologies, occupational training, and independent living support)that allow those who are neurodivergent to live their lives as they are, rather than being coerced or forced to adopt uncritically accepted ideas of normality, or to conform to a clinical ideal.

The term Neurodivergence describes those of us who do not think like the majority aka neurotypicals. Initially, I was shocked everyone doesn’t think like me. I realize we all have individual thought process influenced by the grand variety of factors life offers but it never occurred to me the reason I felt so outlander like was because my perception of reality is far different from the neurotypical version.

As I leaned more on the online disability community for support with my new diagnosis of Ehlers-Danlos Syndrome and POTS, I saw myself in countless reblogs, tweets, and status updates from the Neurodivergent community.

I saw myself in a new, more holistic perspective free from the shroud of mystery and internal debate theming my existence.  It’s taken thirty-six years to unravel this mystery. I am thankful to unite with my answers through the EDS and other medical diagnosis but this last piece of the puzzle is equally important to improving the quality of my chronic illness life.

776px-autism_spectrum_infinity_awareness_symbol-svg
Rainbow Infinity Symbol for the Neurodiversity Movement
I got a comfortable vibe from the doc and within a few minutes of conversing I felt my mask slip away and everything underneath, the real me, began to ooze out from underneath.

But it was okay.

For once, I didn’t mind letting go of the disguise and I let each of my statements hang out with all authenticity and weirdness without fear of judgment. After all these years of avoiding this avenue of my care, I knew it was in my best interest to force my authenticity forward. This is a rare occurrence for me at doctor’s appointments. Even with my psychologist providing Cognitive Behavioral Therapy, I find myself guarded. It is a weird ego thing I only recently became aware of but now I see how my experience as a registered nurse creates a situation in which I have trouble putting away my nursing persona so my practitioners can’t see me, the patient. My nursing persona is how I managed the mildly successful, eight short years in the career field without [completely] blowing my cover.

When I twenty-something gamer I loved playing the PlayStation game called Persona.

Source Wikipedia https://en.wikipedia.org/wiki/Persona_(series)
“Advertising artwork for Persona 3 showing the main protagonist, two of the main cast, and a Persona. It was created by Shigenori Soejima, whose work has become strongly linked with the Persona series.” Source: https://en.wikipedia.org/wiki/Persona_(series)

It was an RPG, classic-style game in which a high-school and town is taken over by evil forces and these fashionable students band together to banish the evil from whence it came.

The students morphed into different personas, some being much greater and more fantastic than their regular selves. These alter egos allowed for super cool battle attacks or mass healings during fights plus the looked amazing. It was one of my favorite games, probably because it represented how I am not quite myself around others because over the years I’ve adapted to my stress with socialization by creating the personalities to fit the situation. It’s like being an actor except way less cool and glamorous. It is an exhaustive feat and only now do I realize how damaging it is to hide myself wherever I go for fear of people who don’t understand.

Preoccupied about minding my non-verbals and responding appropriately, every social interaction becomes a performance I must overcome.

Any time I need to be someone or something other than the who and the what I am, an appropriate persona takes over automatically based on my study of the role, fictional characters in books or videos in similar situations and close inspection of the other’s behaviors and reactions so as to modeled my behavior accordingly and hopefully avoid social ruin. This worked most of the time but there were times when I was physically sick and everything interpersonally spiraled out of control. I am not disingenuous, only lacking in an understanding of what normal is, exactly.

Finally, I came to terms with a life of disassociation during 2015 and 2016.

Unfortunately, my body now recognizes every social instance as a potential fight or flight situation. For me, social nuances, boundaries, and analysis of situations realistically is my greatest challenge. I get lost in the interpretation of all the unsaid rules innate to most but not for me.

This article contains a couple Amazon affiliate links for books recommended. Using these links to purchase on Amazon earn me a small commission.
Please see the Disclosures Page for more details. 
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Over the years, I cultivated a mask for almost every situation. I forgot who the real me was hiding beneath all the masks piled atop to deal with the world. Only after my total disability in 2015 did I discover what the masks were all about. In my own case, as I delved into understanding every facet of EDS, the possibility of Autism Spectrum Disorder became exceedingly clear. All my life, that thing separating me from them, finds appropriate validation with an ASD diagnosis. It makes the things my longstanding depression, anxiety, and PTSD never explained make perfect sense!

Click to Purchase Everyday Aspergers by Samantha raft on Amazon. Kindle and Paperback versions are available.
Clik to Purchase The Misunderstood by Rose Whitson-Guedesbon Amazon. Available FOR FREE for Kindle Unlimited!

I read Everyday Asperger’s by Samantha Craft and Rose Whitson-Guedes account The Misunderstood: A Theoretical Profile of the Hidden Savant. It was like my diary was a stream of consciousness to inspire the authors. Each new autobiographical book from Autistic Writers struck a chord deep in my awkward soul and I finally felt I found the “missing piece.” For many years, the pages of my numerous diaries spoke to my constant sense of not belonging. I felt like a loner and a nomad from day one.

Armed with a better understanding, all the things I learned to bury deep beneath the surface for fear of judgment and ostracizing are now laid at for all to see, even myself. I don’t feel embarrassed by these discoveries, only validated for all the confusing moments of my life. As my neuropsychologist asked me questions and I responded in my usual tangential way, I could see my symptom checklists virtually added up as silently equated estimations of my chief difficulties.

Soon after the questions started, he pulled out an ASD criteria sheet to go over with me regarding my symptoms.

Hubs was there and gave valuable input especially when I got lost in my own details, unable to explain my point or find my way back to answering the question. The Neuropsychologist appreciated the additional input. By the end of the session, the doctor said he doesn’t think there will be any problem getting my insurance to approve my testing. To paraphrase the unofficial ruling was probably Aspergers if it were still a diagnosis but not severe autism… even if it is severe autism you are probably high-functioning on the spectrum still. 

Now we wait for a testing date.

A neuropsychological evaluation on my symptoms needed to come several years ago when the neurological portion began getting worse but for some reason, I never seemed capable of coordinating my care enough to get this important assessment until Fall 2017. After all the struggles, all it took was a call to a Neuropsychological Group that accepted my insurance and I got an evaluation appointment scheduled about three months later.

This is a big event for me. I want to illuminate my ASD diagnosis to make it easier for my daughters and son to also get an evaluation. All my kids are obviously on the spectrum. My daughters are adults now but motivated to get diagnosed soon after we move because of vocational and social issues but my son is still young and I am unable to get his dad to agree to the evaluation. He holds to the mentality “There’s nothing wrong with my boy!” It a frustrating, useless, and damaging stance to take while my son is expressing difficulties in school as illustrated by his grades. He would do so much better with an individualized education plan in place. 

My other expectation for getting the testing done is so my medical doctors will better understand my experience with physical pain and distressing symptoms. All my life, I’ve met with quizzical looks when describing my physical sensations. I remember when I became aware of this fact during my second pregnancy. I called my midwife almost daily with all my symptom reports. Things like”it feels like someone is jamming a knife in my cervix” to “It feels like my intestines are swelling up” and so on makes it easy to see my sensory experience of pain is different than others. During my second major hospitalization my GI doc told me I suffer from “hyperalgesia” in which I feel visceral pains where “normal” people do not.

With getting an established diagnosis, my doctors *should* understand why my experience with physical ailments is intensely unique. Maybe they will know when I make a complaint, it usually is accurate in description to the investigated problem and I am not being dramatic, only communicating the authenticity of the experience. My other hope is in establishing a baseline for these cognitive losses more recently incurred, if things decline further there will be data to compare when we cross that bridge.

To better illustrate my case, I prepared a portable USB drive with all pertinent information including childhood pictures, writing samples and all my medical and psychiatric history.

(Click a picture to open the slideshow!)

The doctor expressed gratitude for my preparation saying it was helpful I was so organized. My thoughts played loudly in my head: If only you knew… In former years, my preparation for this type of an appointment would’ve been pristinely organized with more than enough, if not too much information, along with obtaining copies of all my recent tests and providing a portfolio of all my medical history. Even so, being somewhat prepared was more helpful than not for presenting a clear picture of my case.

What I find most interesting in researching the incidence of ASD with EDS, I’m hard pressed to find anEDSers without ASD features. Conversely, I’ve yet to find someone with ASD who doesn’t fit the EDS picture.  Part of my mission here at Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome is adding my experience to the growing body of evidence correlating EDS and ASD as cohort diagnoses.

[Click to open search results for Ehlers-Danlos Syndrome and Autism indexed by Google over the last year]

Illuminating this connection in my own case explains much of my life with an undeniable validity. I share my journey in hopes of shedding light on the topic from a real life perspective for others facing similar circumstances. While #SelfDiagnosisisValid, getting my ASD diagnosis verified to bring clarity to not only my experience but other people’s experience of me and others like me feels like an important part of my journey. Thanks for taking the time to be a part of my neuropsychological path in my advocating for my best interest in healthcare! I’ll be updating as I get more information. Please subscribe here for updates to this unfolding story and other Chronic Illness Life with Ehlers-Danlos Syndrome related content!

 

ending quote on weight

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