Divergence

The biggest challenge of my life has always been that I'm different. My brain is wired differently and even my body is wired differently. I view things a bit differently because I think a little differently. If I were to sum that up I'd say it's in a more visual, kinesthetic way, and in patterns. I see a lot of interrelations. Due to this, my natural way of communication has been interpreted as sounding somewhat awkward - other than times when I've had enough energy and social context to try really hard not to...which isn't always the case. I learn differently and I experience sensory input differently and more intensely. To boot, my genetic health condition (which I was born with) invisibly compromised me physically, long before it was diagnosed, and that was seldom understood. 

I had to push myself extra hard to keep up physically and mentally... and I got discriminated against anyway. All this has made it rough to live in this world. Eventually, a profoundly life-impacting chronic illness evolved worse than it could have had it not been for trauma, I believe. The illness put the nail in crushing my dreams.

I am diagnosed autistic, but I most prefer to identify as divergent, because it feels closest to what I am. It's not because of the books or the film Divergent, although I enjoyed them and I did somewhat relate with them too. It's just a good word to describe it and it's what I most prefer. So, I will refer to this as a term throughout my writing. The way I think, and also the way I am physically, diverges from the typical. Divergence makes it hard for folks to get help for things like mental or physical health. It's hard to heal from past traumas when environment not only doesn't support the healing processes of divergent people, and - tragically - is often further traumatic. I haven't yet completely given up trying, though at this point I'm quite burnt out. 

The rare and complex disease I live with, Ehlers-Danlos Syndrome, or 'EDS" is a strange one... and I mean strange in a horrible way. The zebra is even it's official mascot, and the zebra represent rare and odd disease. Doctors call ailments that are caused by rarities 'zebras.' EDS patients identify with the 'zebra stripes' and it's common to see this as an awareness symbol, as well as sayings like "I am zebra strong" (#zebrastrong hashtag etc) .. 

EDS is indeed, annoyingly, a major zebra. EDS' symptoms present atypically, not the way textbook precedents suggest and describe - and I myself am still trying to learn about and understand it. Due to this I'd say EDS is a 'divergent' kind of disease, but in ways that are very painful, brutal and at times really serious. EDS complications and EDS' associated complications can even be fatal. In spite of this, EDS is poorly understood and patients are often treated with unfair disdain and even disbelief instead of compassion, by doctors, medical personnel and even society. There are countless horror stories from EDS patients, today... which if awful but true. 

Due to the above, EDS complications often go untreated for far too long, and then when they are finally treated it's only crudely with things like band-aid drugs and sometimes IV hydration. I myself reached a point where I have a port in my chest and have to get weekly fluids to try and keep my POTS (a form of dysautonomia common with EDSers) stable. The drugs are hard on patients and cause side effects that can often make issues worse.. and I speak from my own continuing experience with that nightmare. 

Appropriate care for EDS' complications is almost nonexistent (in Canada especially) and in it's place there's a lot of neglect, mistreatment and either over-medicating or under-medicating of patients. Even when doctors aren't malevolent they pitifully utter that they don't know what to do or can't do much to help - though they seem to sympathize and will give drugs to try and band-aid symptoms (sometimes superficially but sometimes genuinely.) I am on 13 of such drugs..

All this - and EDS seemingly being alienated from proper medical care - impacts EDS patients' physical and mental health immensely. The neglect and mistreatment, and the agonizing frustration of often not being able to afford to travel and attain proper EDS-specific healthcare in the few places where it's available, is emotionally and physically traumatic. This is why we need awareness, among the medical profession and society.

It's pretty hard to heal from trauma when one's body and circumstances keep re-traumatizing them. No one should have to go through this and I hope changes can happen swiftly... though in the mean time I'm still looking to anything I can to cope better.

Neglect of an EDS patient often carries on for years and years until their health is very worn down and broken. It is sometimes to the point of being unable to live with any quality of life and considering assisted suicide. Sadly, I know of several EDS patients who are either considering, have applied for and even gone through with this. I've been in the position of considering it myself although that is not what my heart wants at all. I want to live.

I am divergent, and I am broken - maybe past a point of no return or close to it - but I don't feel quite ready to go and I want at least my spirit to heal, first. There are many others like me out there, in similar positions. Our voices need to be heard.

Back to the matter of divergence, I spent my whole life feeling like an alien and trying to understand myself. Discovering that I'm on the autistic spectrum helped that process a lot, and then after that discovering that I'm a 'zebra' (EDS)... but in retrospect discovering truths about myself was challenging and even painful - not to mention further discrimination happened when I openly identified as autistic post diagnosis. I was naively shocked by this, and it was a devastatingly rude awakening in that regard. I just couldn't believe it, because I'd thought "okay, now I have a definitive, valid reason for being the way I really am - this is my license to be weird!" But nope, it wasn't really, at least not to everyone other than within my own autistic community. I could then see how alienated I really was from the way the world is. It was another painful realization. Regardless of it all, I now understand four times as much as I did before I knew.

I found that when I communicated differently - via the way I truly am - it caused problems...even earlier on in my life and long before diagnosis. I tended to get misunderstood and misconstrued inaccurately, even mocked when being the real, awkwardly presenting me. That got me bullied and targeted. I then felt cornered - by an insidious force - into learning and imitating more 'typical' ways to communicate. This caused me to somewhat lose touch with my true self, and in this to become confused about my identity. I then suffered with Imposter Syndrome. 

Then, at times, to make matters worse, my trying hard to imitate neurotypicality caused me to be misread, mis-judged and misconstrued. It was often as things like being untruthful, deceitful or even manipulative in some way. I attribute much of this to inconsistent eye contact - I always had trouble with eye contact but would try to force it, and then the more nervous I was the worse this went. Being misread and mis-judged really hurt because I am an overall truthful person. I wasn't lying about things specifically, but I was trying to hide big, core truths about myself that I didn't feel safe exposing like being 'secrently weird' (before I knew about autism) and later my self-medicating, addiction issues. I developed problematic drinking, and to some extent prescription pill abuse... these were poor coping mechanisms for the internal distress I was in.

Taking on a more neurotypical way of presenting and behaviour wasn't natural to me and, though I'd become quite good at it usually (depending on how nervous and/or tired I was in a situation.) Nevertheless it was still very exhausting and hard on my body. It was especially tough when I had to internalize how intensely I'd react to sudden, unexpected changes and upsets. I could not afford to overtly 'melt down', though I would shut down. I could not afford to end up in a mental health facility and when I did all they did was ignorantly misinterpret, judge and abuse me. Worst of all they'd mislabel me and write harsh, hurtful things, and one of my main motivations for validating the fact that I'm autistic was to better explain and clear up crappy things written about me in my medical files. 

I'm not the only autistic person - autistic woman most especially - who has felt that way and has done just that, for that reason. I'll write more about that specifically in a later blog... but under the pressure of needing to cope and not feeling safe accessing 'harmful help' I discovered drinking. I didn't know where else to turn or what else to do. I can't begin to open up how hard all of that was on my body; it's a painful discussion that I intend on gradually chipping away at.

Like I said, when I couldn't perform entirely up to par at times, it seemed almost overt that I was trying.. that's when I was most misconstrued. I was raised by a narcissistic type who did lie and manipulate, so I knew how to recognize it and always had great disdain for it. I felt infuriated to be framed as this kind of person when I am not, though for a long time wore a shield of pride as a coping mechanism. It's not the same, though. It really isn't... and it's as if people weren't getting that the best 'liars' are actually very good at it. True blue narcissistic, lying, manipulating types are not ordinarily anxious, awkward or defensive in the way that I was presenting at times. 

When I was defensive it was coming more from fear, rather than being cocky, but it was still misread. In my case I was simply trying to cover up the 'odd real me' ... and at times I was trying to cover up things that I'd done to improperly cope such as problematic drinking. How was I supposed to let my guard down? I genuinely wasn't safe because the system, with it's practically willful ignorance, was a threat to worsen my well-being instead of help.

Later on, however, I tried to find and be myself again - especially after discovering that I'm autistic. I was also just too tired (due to chronic illness especially) to keep putting up walls of pretenses. I still am. However, and like I've mentioned, I was unpleasantly shocked and devastated to find that the result of this, and being openly 'out of the autism closet' has often been further discrimination. I wasn't allowed to be myself apparently; when I tried to not be, I paid, when I tried to be, I paid.  I couldn't seem to win and I paid further with my health, which has now bulldozed my quality of life and has indefinitely taken years off of it. 

In fact, autistic people overall have shortened lifespans due to factors like what I went through. We tend to have health issues which are complex and unusual, especially autoimmune, mitochondrial and genetic disease- related. Many doctors, in the public medical systems especially, don't like to deal with those kinds of conditions and tend to be neglectful when it comes to proper care. In addition, we're terribly discriminated against when it comes to our attempts to communicate and ask for help ie. describing our symptoms.

Medical gaslighting - which is when doctors continuously minimize, deny and dismiss one's serious health symptoms, often until things get quite bad, is something that is being talked about more these days than ever. This is a very good thing, because it needs to be talked about. Medical gaslighting unnecessarily delays proper care for people with various chronic health conditions. Many people experience medical gaslighting, but there are certain marginalized groups that get it worse than others. Autistic people are on the forefront of that, especially because the health conditions we deal with, again, tend to be unusual and complex. 

People with more unusual and complex conditions experience medical gaslighting frequently. The double-whammy there is that autistic people's 'different' ways of communicating are often discriminated against, too. A lot of autistic people have mental health histories as well, and unfortunately this is stigmatizing (though it shouldn't be) and further causes problems in terms of medical gaslighting, discrimination and neglect. So, due to all this, autistic people's lifespans have been found to be overall shorter with death most commonly occurring between 38-58 years. At age 37, I am entering that window, and I won't be surprised if I'm at the shorter end of it, either, because my health is very broken.

Not enough is widely understood about EDS and it's complications, especially in the public systems. Therefore, it can be pretty scary to have an EDS complication crisis of some sort and end up at the ER. I have trust issues with them knowing what to (properly) do, to help me. It's gotten a little better with certain things like hydration over the years, because of my doctors' directive, but still. I can't even begin to begin to describe how tough it has been, usually waiting it out at home terrified and incapacitated, or = in ubelievablepain where it hurts to breathe. not just for me...so many Ehlers-Danlos patients are suffering tremendously and it needs to change. My body is very challenged, but not in a way that bodes with textbook precedents. This has caused me to fall through the cracks over and over for years. Trying to get help for my worsening physical ailments over the years has been wrenching. I repeatedly begged, with next to no care at first, and in it's place? Xenophobia and discrimination. It's a story I need to tell, and I'm working on it because I need to get it out. 

Then, when I became more obviously ill in ways that were impossible to 'to do myself' - to the point of being 88ibs at my worse - there came only little snippets of band-aid 'help.' Some drugs like beta blockers and pain meds, pancreatic enzymes (which was my idea) and weekly IV infusions to replace lost fluids etc. In late 2019 I finally found a better GP... and then the pandemic hit. I was devastated. It's all been too little too late. 

There are more and more people like me emerging, so things need to change, and I hope to be part of that, even if change doesn't happen quite on time for me. 

Skeptics, bullies and gaslighters, within both the medical system and outside of it ie. online haters, have tried to cite that I am somehow bad for being me and being the way that I am. They unfairly and cruelly assume and claim ridiculously untrue things about me like I'm some kind of neurotic, faking for attention, and worse. Or just 'weird' - as if my quirky-ness is an excuse to not have compassion for my situation? It's absurd but I cannot let it get under my skin anymore; I can't afford to let that take me down. It has done so enough already. 

It's like, if you only knew what I went through at here at home, you wouldn't think those things, you wouldn't say those things! You'd know that these accusations are cruel and simply incorrect. I've also been called pathetic and a loser, and that admittedly hits home because I have felt a sense of that and like I've failed.. but I have to remember that much of it isn't my fault and I was up against a world completely inhospitable to me... and now? I myself am recovering from additional damage thanks to covids' affects on my own condition, in a recession, with untreated and very painful cervical spine instability (there's no treatment here, that's why I have a go fund me up.) I have to remember that people who say such things are mean, ugly people inside and are the type to sadistically 'kick a dog when it's down' - and that is the intent. Or, they're really ignorant, insensitive, judgemental, classist and/or ableist .. or a bit of both. The problems' on them, and they're wrong. Period. 

Regardless, dealing with public bullying hurt and impacted me a lot, it was traumatic and I struggled with it - but I need to heal now. 

I am the opposite to a 'bad person.' I'm a highly empathetic person - and to a fault where it's been hard on me. I've been targeted because of who I am, and it isn't fair but unfortunately bullies target people who are different. I want to speak out about this, as well as general discrimination, in the right ways that is - rather than continue to internalize it and feel victimized. I have been bullied socially when attempting to express myself and speak my truths. For example, when I'm myself, just expressing emotions even, I am sometimes mocked and not taken seriously simply because I am autism one (formerly Asperger Syndrome) and presenting. It's frustrating and hurtful. If people can be more thoroughly educated on this maybe they'll develop more respect and listen to people like me expressing ourselves, as human beings, albeit a little differently.

I have to stand my ground and say this is who I am and this is my truth, and know that I deserve some respect and compassion. I've had to do a lot of reflecting and learned a lot amid the pain of bullying, slowly developing a thicker skin no matter what it takes. 

In retrospect, however, I've also had a lot of love and support from several people, followers of my work, friends over the years. I certainly can't forget that either. I'm grateful for these folks' kindness, support, intrigue, relating and seeing me for me - albeit different - as a human being first.

Life has been injurious to me, as it is to most divergent people today, unfortunately. It is why autistic people sadly have, on average, a reduced lifespan. It was all such a rude awakening because I was a dreamer hoping to find my ideal place of bliss and peace which I no longer think exists... at least not in the way I'd expected it to. I was not interested in following a certain 'way' in order to be commended and rewarded for doing well - but I didn't even realize that, in cases other than sheer luck (and privilege), doing what we are 'supposed to do' - in the ways that we're supposed to do it - is how one could most likely be rewarded - and thus 'succeed' - in this world. The problem was, I didn't inherently know how to do what I was supposed to do in the way I was supposed to do it... and no one was there to show me how. No one.

That doesn't mean I wasn't willing to put effort into achieving - I tried in my own way... it's just that my own way simply wasn't good enough, overall. I didn't understand that there are certain methods which are most acceptable and heed certain results in this life. If the way that you naturally do things falls outside of norm - if the way that you are falls outside the norm - you can run into a real struggle. In this, I was naive.  For a long time, I didn't even know I was struggling. I was in denial due to pride. Then, when I finally figured it out, it was painful and frustrating, so I become more forceful with myself. More harsh. I got by that way sometimes, but other times I ran into painful struggles when it backfired.  Then, I tended be more even more harsh on myself, I'd even punish myself. I was beat up over and over, and over again in this ring... getting worn down more and more. I  fought to navigate through storms I shouldn't have even had to, especially alone. I got through them to the end, but at each end more and more exhausted. 

This is how we die faster.

It's important to mention that privilege also plays a big role in making things easier for people like us, and divergent people who are privileged can oftentimes (though not always) be very successful - especially in their niche areas. We often have strong gifts in areas like the arts and music, language arts and sciences, and if those are fostered in conjunction with proper care for health, mental health and appropriate education, we can often soar. Underprivileged divergents, however, often have really rough lives and will expire in the premature time claimed in the studies. It's a lot easier to make it as any kind of autistic artist when one has privilege. Though it shouldn't be that way it definitely is for the better part of things... and I think people need to remember that more often. It's a hard truth a lot of people like to overlook or minimize. It's harder for us creatives - who dance to the beat of our own drums - because in order to succeed in the rat race we have to play more by and follow the ways that are often very difficult for us. 

Initially, I myself came from some privilege, as a successful lawyers daughter born into a well-off family living in a beautiful, well-off ocean side neighbourhood with a big, beautiful house. This is a story I hope to share a bit about in this blog and in my book - but when it came down to it my early home and family life was dysfunctional behind closed doors. My parents' marriage was toxic, they did not see eye to eye and the bulk of it came from my mother being, well, personality disordered; borderline with a fair bit of narcissism as well as suspected nonverbal learning disorder. 

As the surviving 'adult child' daughter of narcissistic mother-ing, when I was quietly contending with autism one myself, I can tell you that behind the white picket fence it was painful. We kids' true needs were overlooked, my sisters and I in particular more so than my doted-on brother. After the money mostly evaporated, everything came to be broken. Finances were lost along with the excessive spending of the unwell parent followed by the subsequent depression and burnout of the other. By the time I was a young teenager, we were hitting the poverty line. I'd gone from 'riches to rags.' It was not a fun experience. This was one of my earliest severe traumas. It served as the first set of fractures. Naively, I thought I could escape this by growing up too quickly and making my own way, not knowing that I was merely precocious. I had no idea that - in the face of my being 'different - 'the system' would turn out to be practically worse than my family home life. It ultimately broke me. 

Through love, light and faith I hope to find my way to healing my soul - in spite of my physical state.

Scarlit-Rose Ashcraft 

www.dreamerqueen.com

Rosie's Fight For Life Upright (Medical Fundraiser)