Forward

Financial inequality in healthcare is a problem throughout world. This problem is obvious enough that, at the end of the day, we're all aware of it. However, people tend to be quite ignorant about what it's actually like to have an illness and/or disability that is not obviously apparent and therefore mostly invisible, or, what it's actually like to be living with health problems while poor, unless these things have personally impacted them or someone very close to them. In this, I think more media coverage in the form of things like documentaries - to show what it's really like for us - would be crucially helpful. 

I feel that people really need to know about three crucial aspects of being chronically ill and disabled, including invisibly; They need to know about how hard it is to be stuck trying to live and cope in this situation with lower income, they need to know about how cruel it is to disbelieve someone just because they are working hard to cope and function and in that their illness and/or disability is not obvious to the average observer, and, they need to know about medical gaslighting and how much of a problem it really is. Medical gaslighting - trying to convince a concerned and suffering patient that nothing is really wrong with them and it's all in their head, rather than properly addressing the patients' health problems - is being far too frequently and freely allowed. 

The truth is that it's egregious, as is being repeatedly called a 'faker', as is trying to live with chronic illness while poor and thus brutally lacking in access to all kinds of resources necessary to lessen the impact of such difficult afflictions. The things many chronically ill people have to go through because of all the aforementioned are utterly soul-breaking and ultimately fatal. It's all rooted in ableism that causes misjudgement and stigma, and people need to be more aware because this social attitude - which I like to call 'disbelief ableism' perpetuates a level of human suffering which is, in total truth, cruel and inhumane. 

While there's a lot out there about illness and disability in general, there's not enough about specifically being chronically ill...especially when also poor. There's almost nothing more brutal than being sick and low income. You feel so helpless. You have no choice but to fight with what little you have. You're fighting for survival on a whole new level. One often has strong suspicions about what is wrong with them and the causes as to why - but they can't access the testing and subsequent treatment that would bring adequate relief. To make matters worse, chronically ill people who don't have the money to prove what is going on with them get the absolute brunt of medical gaslighting. The tease of socialized healthcare lies to us and makes us think that care is available, only to mostly gaslight and gatekeep us from the level of care that'd truly help with quality of, and extension of, life. It's because that'd drain the budget too much. The latter is why the gaslighting is used on patients. To save money. It happens all over the world... and it's egregious.

The more we push to try and access the level of care truly needed to produce a reasonable quality of life, the more we tend to get shut down and sometimes even attacked as I did. That report written 'about' me that served as an utter stink bomb in my medical file. It was a flat out attack - it even read that way and the fact that the doctor got away with writing it is mind boggling to me. It means that others enabled her. It was a massive attack of structural violence, and when most vulnerable, I was bullied and ganged up on by an entire medical system instead of being helped with my serious rare genetic disease. I spent years that way with a huge lack of help, pushing myself to carry on. That's often what happens. We have to push past our limits and carry on with limited to no help and resources, on a daily basis, in the face of inaccessibility - and then some ignorant folks accuse us of 'faking.' That, too, is egregious.

Being accused of 'faking' for having no choice but to cope and mask amid our intense pain and exhaustion is just absurd and it needs to stop. People need to educate themselves better. I know all of this from experience. The level of disrespect that is rooted in these ignorant assumptions, when one is working so immensely hard to cope while invisibly suffering so much, is on it's own level of awful. Who are the most shameful bad influences when it comes to endorsing treating invisibly disabled chronically ill people like this? Doctors. Yes, appallingly, it is those who should be the most obliged to help. 

Many do show some concern about the overall issue of inequality in healthcare but this is still predominantly pity-based and overt evidence based.. with the issue of not believing or minimizing chronically ill people who have more invisible disabilities being endemic. Illness and disability have to become severe enough for it to be more obvious. Charities to try and help keep the deeply disadvantaged afloat are somewhat abundant. However, what they cannot see or recognize are those trapped in socialized healthcare systems who are receiving a level of 'care' which is nothing but utterly substandard, totally non-preventative and is killing them unnecessarily. However, oftentimes people who are suffering that way try to assert their concerns, it may be seen as too 'demanding' or 'ungrateful' - which is very frustrating. 

What is barely recognized is the abuse and constant disappointment patients like me go through trying - to no avail - to get to the right answers and to a better level of care so that we can function better and be more contributive in life. Contrary to popular belief, we do not want to be laying around all day debilitated on a couch or in a bed. Very few people actually want that. The small and more rarely occurring fraction of those who do, and who truly are histrionic, or factitious, ruin it for everyone else by tarnishing the reputation of most actually chronically ill people - which is beyond frustrating. 

Some people, in desperation, put up online fundraisers in order to try and financially attain a better level of care privately, but even with that effort, observers do not fully recognize the true brutality of these situations. Again, that small number of people who really are fraudulent attention or money seekers ruin it for the scores of people who genuinely need help. Contrary to the belief that people in Canada and several European countries are 'lucky' to have 'free' healthcare, many people are dying - for the most part left to rot - in these socialized healthcare systems fraught with deprivation of adequate chronic maintenance, more specific diagnostics, care and sometimes necessary medical procedures - with fatal results. When it comes to chronic illness suffering, we often don't fare much better than those in countries with capitalist medical systems, mostly run by insurance companies, who have limited income. 

The pity based attitudes for only the more overt situations of illness are far from good enough. Charity to supplement underfunded healthcare is not good enough... and reinforces the idea that we must turn to charities, to outside help, instead of reforming the systems - and peoples' overall attitudes - themselves. Reform that comes from a paradigm shift in thinking, and a larger, better allocated budget to follow, is the solution. Rationed healthcare is full of situations where money could be used in better ways but is wasted. Sometimes it's even wasted on continuing to gaslight and gatekeep patients, which is both stupid and tragic. In the extreme of this, patients are passive-aggressively attacked with horrible, invalidating and flat out discrediting mislabels put in their medical file which, like in my situation, can be very damaging or even fatal. This gross mis-labelling, with things like histrionic personality disorder, somatoform disorder and worst of all factitious disorder (formerly Munchausens') can severely impede access to proper care and therefore any chance of proper illness management and a prolonged life. 

Recently, we just received word that 33 year old Stephanie Aston of New Zealand - a relatively wealthy country capable of providing reasonable medical resources, died from complications of Ehlers-Danlos Syndrome due to being accused to Factitious Disorder and resultantly systematically prevented from receiving adequate care for years on end. When I read that it hit me hard because I have the same condition and this nearly happened to me, had I not been serendipitously diagnosed in another country and fought to have it recognized. Doctors would not accept that Stephanie was truly ill, and not by her own hand, even though she overtly appeared to be very overtly ill...and with things that are very hard to 'fake.' She's not the only one. A couple years ago, another young lady named Olessia starved to death after having her gastroparesis - a condition which makes it very difficult to eat and required a feeding tube - repeatedly dismissed. Like Steph, she too repeatedly begged for help to no avail. There are several more like Stephanie and Olessia, and the fact that this kind of murderous, criminal behavior keeps being allowed is tragic and appalling.

We need change. This means not allowing what happened to Stephanie, Olessia, others like them, and to people me who may remain alive for a number of years but damaged and with diminished capacity, to ever happen to anyone. There should be better safeguards in place - and regulations - to protect patients from doctors attempts to do them harm like this. Doctors should not be able to come to seriously inaccurate 'conclusions' without strong, solid evidence as to why. Doctors' 'opinions' should not be so readily taken as 'fact' without proper, concrete verification. Verifying evidence was just not present in my case, and in fact the evidence at the time showed clearly why I was definitely not 'factitious' - all that was grossly overstepped and I was near fatally mislabeled. 

From there, my access to a proper diagnosis and subsequent care was near completely abolished. I had to fight hard to disprove that accusation against me in order to safeguard myself from a continual, not only damagingly neglectful and downright dangerous, lack of medical care. The energy I needed to deal with my health itself was used fighting the system and as a result I sustained much more severe damage to my health than I ever should have. The story of what I went through for my frankly un-fake-able genetic health condition to simply be recognized and taken seriously is an agonizing one that I need to tell in hopes that people will see how truly horrible something like this can be. In this maybe it won't happen to others in the future. 

Based on my own painful experience, I have found that what's frequently overlooked and even undermined, is how serious and inhumane of a matter financial inequality in healthcare really is - and I mean at the fundamental level of human dignity. However, the underlying reason for this is very much rooted in ableism. In most cases, those with more money are simply able to get better quality medical treatment which is bought privately and is at a much better level of quality than what is handed out for free via charities or government subsidized socialized healthcare. I'll detail how that looks later - it's for a chapter of it's own. 

Overall, people with wealth and therefore quality, comprehensive healthcare have far better outcomes when it comes to improvement of their health conditions and general quality of life. Whereas those who are income limited or poor often suffer unnecessarily suffer and die prematurely, sometimes after several brutal years of suffering and fighting, because they're unable to access the level of care they need to properly manage their health conditions. Makeshift, for lack of a better term 'poor mans'' self management can rarely replace good quality integrative healthcare. However, complaining about this is often seen as just that; Complaining. The attitude about this is a bit of a 'too bad, so sad - if you can't afford better healthcare well that's the luck of the draw... and you should be grateful for any basic healthcare hand outs you are given." Frankly, this is pretty classist. 

Poverty is too often thought of as the fault of the person in poverty... although for so many reasons this just isn't so. Lack of privilege is almost always not a persons' 'fault.' It even goes even deeper than this and that is linked to why the perspectives and attitudes I am talking about remain so prevalent in society. There is a more covert problem related to class and thus healthcare inequality. It is one that relies on the judgement of character in order to deem how apparently worthy you are...and that includes worthiness when it comes to healthcare. This, of course, relates to class and status, as well as stigma. This problem is silently endemic throughout the world, and it's the real problem that allows inequality in healthcare to continue on as it does - without enough effort to try and improve it. The fundamental reason is indeed rooted in class and status, and after that, stigma. 

Those afflicted with things that are stigmatizing such as mental health and addictions, complex trauma, and both mental and physical disabilities, also seem to carry the burden of 'less than worthy points.' This is especially so in the lower income population and much less so in the higher income population. Though stigma can affect the wealthier, too, it's less impactful than it is in the poorer. Each of these things are like bricks that weigh one down...a brick for being poor, a brick for being chronically ill and/or chronically disabled, a brick for being mentally ill, a brick for being neurodivergent, for having a known history of trauma (and yes, even though the expectation is to be compassionate, there is also an unfortunate covert stigma that comes with having a documented history of traumas like childhood physical or sexual abuse)  the more bricks the more sunk in and pushed down a person seems to be.

Therefore, truth be told, the people most at risk to experience sub adequate healthcare are people with limited income, and the poorer the worse that is -  and people who are 'different' mentally and/or physically, due to chronic illness, disability, complex trauma etc. People with rarer and more complex, health conditions are extra affected by lack of validation and particularly pronounced neglect. People with chronic illnesses and disabilities receive the brunt of discrimination via ableism - because their disabilities are permanent and those people won't 'get better and get back to contributing to society in the waysj expected' at some point. Let's not forget those with differences 'upstairs' ; like people on the autistic spectrum and people with varying mental health issues, are the most stigmatized and least validated and listened to....even though the irony is that these people are even more likely to be more severely impacted by health conditions! Last but not least, people from ethnic minorities and marginalized communities receive additional discrimination 'points' (or more fittingly 'anti-points') when accessing healthcare too. 

All are 'bricks' weighing one down in this predominantly pro capitalist world of class and status as it seems. 

Anyone who is vulnerable to discrimination is vulnerable to receive substandard healthcare on the basis of having their worth judged by these things. It absolutely shouldn't be this way, and not all medical personnel agree with this behavior towards patients, but sadly, this is the current. To put a double meaning to that word, many are 'swept away to drown' in this current 'current'. Again, not all people in medicines' perspectives are based in the general attitude I am describing - there are some good doctors, nurses and mental health practitioners who know things as they stand are rooted in the wrong and need to change. 

However, too many still partake in the current class, status and ableism based attitudes...even those who say they do not and claim to be 'accepting of the diverse' are doing so on a very superficial level - which is something I intend to get into more deeply later. The bottom line is that an endemic of covert bullying, snubbing and undervaluing of scores of disabled, chronically ill and lower income people, by not only medical personnel but by all of society, remains. It is actually egregious, regardless of the current fact that this is not being widely recognized. 

Not only does much of society not do enough to stand up to ableism and classism in healthcare and in general; They play a huge role in enabling it. This is what it is: egregious. If only people could see it as such, for once, maybe things would finally change for the better.

Many of the more 'developed' nations; Canada, the UK and several European countries, Australia, New Zealand and the USA, frequently use and abuse this silent form of structural violence to weed out who they will deliver healthcare to, and how much. After all, healthcare and health insurance budgets are limited. People seeking help who are different, more complicated, or more unusual - especially if they are trying to advocate for themselves - are seen as a problem because they'll take up too much time and money... because that's what it is currently about over human welfare. Some people would argue that if more generosity was extended that the economy couldn't handle it. However, I think there are many ways to reform things, via a paradigm shift, which could result in a win win situation for both the economy and for human welfare, too. 

I feel that, ultimately, humanity and the greater good depend on this. Conservative economists would beg to differ about that, I know. They believe that you just can't save everyone and maybe they are right .. but what if we could shift our focus and aim to saving those who truly deserve the chance? What if there was a system based in prioritizing saving those people and thus saving the greater good. No, I don't mean 'deserving' based on status and wealth, and the currently cruel and superficial capitalist and ableism based scale of 'worth' - I mean a deeper, more moral and virtuous based scale of worth .. or rather, of deserving the chance. This refers to the deserving being based on actually being a good person - not based in ableism, status and financial wealth. Not even superficial moral do-gooder points either - with so many extreme woke people doing further harm, and often violating the two wrongs don't make a right principal, in the name of claiming and asserting do-gooder points I am not referring to that, either. That topic is for an entirely different chapter, I think. 

The people most judged by society, and by doctors, may be labeled things like 'overly anxious', 'psychosomatic' (imagining health problems that aren't there), just depressed, selfish and entitled, even supposedly narcissistic (for willfully trying to get real needs met, that is) and, at the very worst, factitious or malingering (intentionally doing things to make oneself sick or injured for attention and/or personal gain.) These labels may go on a persons' medical file when medical personnel decide to judge them and 'document' it. They have too much power to do such things. Then, the next consulting professional can read these things and potentially make harsh, negative judgements before even getting to know the person themselves. From there, the persons' quality and amount of care is affected. Many people have been neglected and mistreated this structurally violent way, in medical systems. It is so wrong and it's time to end this.

This system is an old fashioned one born from far in the past. In Victorian times, poor people would go to 'workhouses' to get free basic medical care. Back then, the triaging nurses and doctors would examine and interview each person, and 'categorize' them in terms of worth. They would use factors like whether they were an illegitimate child, conceived a child illegitimately, were religious or not, were strong willed and seemingly entitled or subserviant, were odd and strange or more socially 'acceptable' and so on. Category one was to be sympathized, and they would do all they could to help that person, whereas something like category five was labeled 'Malingerer' meaning, the persons' symptoms were (supposedly) not real and they were just doing it for attention and personal gain. The act of labeling someone as a category 5 was seldom based in actuality; it was more based on how positively or negatively the one triaging was judging that person. Regardless, the result affected the quality of care the person would receive. Oftentimes, and frequently, the worst result of this was horrible suffering unto death.

Unfortunately, a modern and more subliminal version of the same system still exists today in our healthcare systems - especially when one can't pay privately and directly out of pocket for medical services and services offered as complimentary hand outs need to be budgeted. It's a game of weeding people out. People are still judged and labeled in negative ways, as they were in those Victorian times, and it impacts their healthcare. Psychiatrists are often involved in this process. Though psychiatrists' main purpose is to help people with mental illness - and sometimes they really do - they are also sometimes used as a weapon to invalidate "problem patients."

How may this happen? A doctor will come across a patient complaining of various health problems that are not easy to solve and may seem unrelated. This is because the person is likely suffering from a systemic condition (a health condition that involves many different systems in the body.) Systemic, chronic conditions are the biggest financial drain for socialized healthcare systems, of course. So the systemic condition suffering person, especially if they seem persistent or 'demanding' of answers and solutions, will be seen as 'problematic.' Then the doctor will determine the patients' behavior is caused by mental health issues only, or at least primarily, rather than having a real physical cause. Then, instead of taking action to help the patient, the doctor engages in something called Medical Gaslighting. Rather than ordering investigative blood tests or medical imaging which cost money, they try to convince the patient that all of most of the problems they are experiencing are simply in their head. Note the irony in this, since a lot of those suffering with chronic, systemic conditions are dealing with neurological problems that are difficult to diagnose and often don't show up in things like blood tests or even imaging (unless it's a functional MRI of the brain - a test that is far too infrequently ordered and thus difficult to get!) Sometimes the patient initially believes the gaslighting, and other times they still insist that there is something physically wrong with them. Doctors see it as even more problematic when it's the latter. The former is just as problematic for the patient, hence they are left to suffer until things might get so severe they are diagnosable. By that point, they are far gone and the opportunity to engage in preventative care is totally lost.

Doctors may then go a step further, and refer the 'problematic' patient none other than a psychiatrist, and say negative things about the patient in the referral - even before the psychiatrist meets them. This will cause a preconceived bias about the patient. This is what happened to me. The patient may initially naively believe, like I did, that the psychiatrist can somehow help them. But unfortunately, the agenda is darker than that. Instead, the psychiatrist may write a critical report about the patient, and label the patient with something that is meant to be negative, stigmatizing and invalidating of physical health problems. This label goes into the patients' public medical file. When it is read by other medical personnel meeting the patient it causes negative judgement, discrimination and therefore gatekeeping of actual healthcare. The patient is then not taken very seriously when they complain of any physical ailments, from then on. This psychiatric mislabelling of actually ill patients is so very dangerous for reasons I don't think I need to further explain, but I will go on ..

Imagine that from there, the deliverance of healthcare is put to a stop and it may take something very serious and severe to happen, for the patient who has been mislabeled to be taken seriously at all. At that point, damage has been done and it could even be too late. Again, there is little to no preventative care for mislabeled patients. This is the primary reason why being mislabeled is so harmful.

It's also important to emphasize that having mental health problems absolutely does not mean that a person doesn't also have real physical health problems. In fact, the two often go together, making it more likely that the person is also physically ill in some way. However, many doctors archaically fail to make that connection and discriminate against and stigmatize mental health problems as stand alone problems. Just because someone has mental health problems doesn't mean their physical ailments aren't real and they are not as worthy of medical care. If anything, their need for prompt care is more crucial because they are more vulnerable in life overall. Many doctors, who should know better, tend to forget this and discriminate anyway. Again, they even discriminate against someone with a history of trauma, which is absurdly common. Many doctors and other medical personnel have very little to no training or willingness when it comes to proper communication with people who have mental health conditions, complex trauma, and especially people on the autistic spectrum. But the poor marginalized patient is the one who suffers for this incompetence and tragically falls through the cracks... sometimes to their full demise.

On the surface, many socialized healthcare systems claim to provide equal care for all, and to not be discriminating, but this is simply not the case. This is nothing but a superficial claim and underneath it a lie. There are people from all over the world who have been treated unfairly, and sometimes flat out neglected and abused, in medical systems just because they are different; They behave a little differently, or their health needs are different or more complicated. Many people like this are mislabeled, and the consequences can be fatal. Poor treatment and neglect results in a way worsened health situation and way poorer quality of life than there could have otherwise been, had it been prevented with better, earlier care. This is directly linked to the documented high percentage of shortened lifespans in people who are neurodiverse and/or have mental health issues. I write about this because it is happening to me, and I want people to know that this is a real, serious and endemic problem that needs to change.

On February 13th, 2013 I was interviewed by a psychiatrist, Dr Kiri Simms. I was having problems coping with my health and chronic pain, which is why I had agreed to talk with her. I was naively hoping that she might have some advice or connections to resources. I was not looking for another assessment, because I'd already been assessed and was content with those results which had diagnosed me with autism one (formerly asperger syndrome), ADD NOS, specific phobia and complex PTSD. Regardless, she proceeded to 'reassess' me, which was distressing. The result? She 'diagnosed' me with supposed "Factitious Disorder", which is the newer term for Munchausen Syndrome. It was like a 'category 5' from the Victorian workhouse times. People with Munchausen Syndrome do things things to themselves to intentionally make themselves sick for attention. For the record, the health problems I was developing, and have full blown today, are not ones that can possibly be feigned. It's just impossible... and it's all a mess now because of what happened to me. It was a very serious and horrible thing to be labeled with, because it wasn't true. I would not learn about this diagnosis until late March of that year. When I read the report, as I will write about ahead, I was shell shocked and completely devastated. I know for a fact that how I was affected by knowing about that report and being, as a highly sensitive person, very aware of how I was being seen and treated in my repeated, desperate attempts to get proper help, made my health problems far worse. Between being that upset about that horrific, traumatic nightmare of an experience, and the resultant neglect itself, my quality of life and lifespan has been bulldozed. 

The truth, which would be further proven later, is that I suffer from a serious but rare genetic connective tissue disorder; Ehlers-Danlos Syndrome ... and the real reason why I was acting awkward is because I am autistic. Again, I already had an autistic spectrum diagnosis (formerly Asperger syndrome) before the mislabel happened. That diagnosis was made by a professional neuropsychologist who had performed proper testing on me and even reviewed my childhood video footage. In addition I have ADD NOS (combined features.) I also had a diagnosis of post traumatic stress due to a very (and I mean very) painful childhood and adolescence. Autism and complex PTSD were my true mental health diagnoses, and I was a grossly disprespected as survivor, to say the least. Frankly, I was attacked. Who attacks a survivor? Someone with a huge lack of empathy and an equally huge ego, is who. I was content with the diagnoses I had, and didn't want or need the reassessment that ended up being forced upon me. I had gone to that psychiatrist for help with the current issue of difficulty coping with increasing chronic pain, and I told her what I needed and didn't need. A trait of being autistic is being direct. For that, I was attacked. It didn't matter that I was a human being with serious needs and feelings... because to a narcissist, this doesn't matter. 

As for health, I already had health diagnoses too; Fibromyalgia, and a dermatologist had noted that I have the skin type of Ehlers-Danlos syndrome. I was waiting to be assessed by genetics. However, though I'd tried my best to explain myself, Dr Simms wasn't listening and all of this information was unfairly, and in fact neglectfully, disregarded. I was mislabeled anyway. It was a huge overstep on her part, and later I found out that I'd had a legitimate case for malpractice due to those inappropriate oversteps. It was considered negligence, and perhaps even gross negligence. However, I spent the short period of the statute of limitations, which is only two years, fighting for my life. I also didn't have the money for a medical lawyer, though I may have been able to find one willing to take a contingency fee of potential winnings of I'd had the wherewithall to look hard enough. The problem was, I was knocked down hard, physically and mentally, by the entire experience and did not have that capability myself. I had no one to help me with it. So, I missed out on what could've been a much needed settlement to clean up the mess of damage caused by the gross delay in proper healthcare.

The harm that being mislabeled did to me over the years is irreperable. I would spend years suffering with real and serious health complications, without proper treatment - and instead being treated with concern and compassion I was treated with huge disrespect, skepticism and even disdain. It was painful and traumatic, and it even felt like a witch hunt. Now my 37 year old body is damaged to twice it's age inside. I am not the only person who has had an experience like this, and it needs to stop. Mislabeling, with fatal consequences, is a problem in medical systems everywhere.

My life and dreams were destroyed by the terrible mislabel 'Factitious disorder.' My heart and soul were broken, too, because the accusation was so hurtful. It took me years to try and build back some self confidence after that. I was pursuing life as a music artist, writer and poet, advocate and mom when it happened... and all I wanted was real help so I could keep doing that effectively. I had talent, potential and love to give. But instead, I was mis-judged, treated badly and neglected when I fell ill with complications of EDS. I spent so much time fighting to be believed and fighting to survive on my own without proper help - being very stressed out and afraid, in fact terrified - instead of doing the things I loved. I can't seem to get that time back amid the poor quality of life I have now and continual challenges with accessing proper care for more severe EDS complications in Canada - it barely exists. I don't have the funds to go abroad for the private medicine I'd need to regain some of what I've lost. 

For years, medical personnel thought I was just 'doing it to myself' until it got so bad it was obvious that doing such things to myself was impossible...and now it's too late in the absence of a substantial amount of financial investment that I just don't have.

Today, my current doctors and the medical system no longer believe that I am factitious, and they accept that I am autistic..because all of this is just obvious. However, it is all too little too late. I now live with serious and painful health complications, am on 14 medications, have a port in my chest for weekly IV fluids, am mostly bedridden, unable to work, unable to eat many kinds of foods, can no longer do most of the things that I love and can just barely do the basic things. I am opioid dependent for any quality of life and functioning. I have intense post traumatic stress from the way I was treated in the medical and mental health systems, on top of the preexisting PTSD I already had from the past.

During the years that my flare ups were neglected, the ligaments in my neck were damaged. This lead to developing unstable discs in my neck. Living with this is so very painful. I'm dependent on the opiate painkillers which only partially help. I have to use neck collars especially when I sleep, and I'm unable to be upright for very long. I am a walking hourglass with sand running through it rather quickly. I am based in bed. I can't get the surgery I need in this country because there is currently no EDS-specializing neurosurgeon available in Canada... and again...I'm unable to afford the 100 thousand dollars to get it done in the US. 

I simply can't afford the specialized, more effective treatment for EDS which isn't available in Canada, and therefore I am dying. Due to the very things I've talked about in this chapter. 

As it stands, I'm on many superficial drugs which only 'stifle' symptoms while causing me harsh side effects, I'm without the surgery I need, and my condition continues to deteriorate. I'm only 37 years old and will likely not live very long in this condition...even though I oftentimes put on a wilful front and mask with a smile...and I seek to 'steal joys' as I call. It would not have turned out this way had I not been brutally mislabeled, after being discriminated against and treated unfairly throughout my life even before. So I know what I am saying when I write what I write. I see it happen to many others around me, in my autistic, EDS and chronic illness communities. We exist, albeit in the shadows, and people need to see and hear us. This is why I speak out while i still have a voice. I need to write about it so that I don't leave this world without having told my story.