To Sleep No More – the Emotional Underworld of Narcolepsy

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We all sleep. We all dream. But … only a few of us actually fear and loathe the idea of it. After all, isn’t sleep an important function of the human body? Don’t dreams serve an important purpose in cognitive development? What science and medicine don’t understand, and what they can’t diagnose, is the emotional trauma of those who are afflicted with sleep disorders. There are several variants of sleep disorders from sleepwalking (which comes with its own, terrifying consequences), to chronic fatigue syndrome (another highly misunderstood disorder with cross over symptoms of some portion of what narcoleptics suffer). It is estimated that millions of people suffer from varying degrees of sleep disorder illnesses, with only 25% of narcoleptics currently having been properly diagnosed resulting in a rate of 1 in 2000 people world wide! That’s over 3 million people estimated to currently suffer from the disorder.

Yet, few people know the truth about narcolepsy except for the jokes in movies, or the occasional, “I had an Uncle who had it.”

However, the side effects of narcolepsy stretch far beyond the physical symptoms and are an affliction of the emotional and cognitive psyche in epic proportions. Human beings aren’t meant to be alone … but narcoleptics will always feel alone. Humans aren’t meant to fear sleep, but those with the hallucinations and night terrors will sit up, night after night, struggling against hope to fend off the inevitable, fearing what dreams may come. When we combine terror, fatigue, isolation, depression, and a myriad of other symptoms, we get: narcolepsy.

Doctors only publicly discuss a portion of the symptoms, often dismissing even those symptoms related to weight gain and loss (although a widely recognized and published side effect, doctors still often dismiss it as a ‘lack of exercise’ or other such foolish and misdiagnosed conclusion). What’s not typically or openly discussed by most narcoleptics is the emotional trauma associated with the disorder. The hallucinatory side effect (for those who have the extreme cases … not hypnogogic hallucinations as that’s something else entirely and a misused term), only has a few, other known relational disorders that medical professional look to for answers. These include schizophrenia, hysteria, Munchausen syndrome, and a tiny handful of other disorders. While there may be some crossover with the very real effects of hallucinatory disorders such as schizophrenia – no other disorder functions on a parallel level of operation that is anywhere similar or equivalent to narcolepsy. But, that doesn’t stop medical and psychological sciences from falling back on what they know.

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The result: living everyday of the rest of your life in an unspoken, unheard, and helpless fear. How do you tell a doctor you’re hearing and seeing things that aren’t there without the fear of them overreacting and committing you? How do you tell a doctor that you are physically starving yourself and yet, still gaining weight without being ridiculed or called a liar? How do you explain to work or school or even family that your exhaustion is a physical disability and not some late night partying without being judged as lazy or odd?

You don’t.

The only answer, which is the solution narcoleptics have relied upon since [at least] the 1800’s when schizophrenics were being lobotomized, is to lie. If you tell the doctor that your medication is not sufficient, they assume you’re an addict and take it away. Then, rather than trying to function at the basic level – you can’t function at all (and your life is ruined beyond the suffering and trauma already endured). If a sleep disorders clinic doctor finds out, they’ll have your license pulled – even if you’re a safe driver (because, even though the statistics for narcoleptic driving accidents physically don’t exist because they’ve never been an issue, drowsy driving accidents are a problem for the world and narcoleptics are ‘assumed’ to fit into that category).

On one side of the equation are doctors labeling narcoleptics as just fatties who binge eat uncontrollably (yeah … they did that … in this study, without a full level of control on ensuring that they were dealing with 100% narcolepsy or any pre-existing conditions). And, countless articles followed. It was literally no different than the fake news articles that are published today that rapidly make their way to main-stream media, ruining peoples’ lives. Case in point, this study presented by the NCBI that demonstrated narcoleptics eating less than normal people, unintentionally starving themselves due to the shame and pain of weight gain! However, of the two articles, the binge eating article took center stage because it was an easier explanation that required no additional thought, made a few scientists some extra grant monies, and all because some narcoleptics ate late at night (which was discovered in the second study, but as a result of satisfying sugar needs related to metabolic and physical pains and a failure to eat during the day … NOT binge eating!).

Of course, I’ve written about this before. I’ve listed some of the epic dreams … and horrific nightmares that narcoleptics can suffer. But, that’s only the tip of the iceberg. There are consequences to not sleeping. For narcoleptics, sleep is inevitable. But, the constant barrage of sounds and images, dreams that disrupt life, and inability to have a decent night’s sleep are only a small part of the problem. Being treated like a cash cow for medical science is degrading and humiliating. Being shamed for having a disability leaves people feeling so overwhelmingly helpless that it leads to manic depression, and even suicide. Yet, we live in a shaming society. Online media has provided a new outlet for shaming that has sufficiently demonstrated that fact. What once used to be known as guilt-tripping is now called shaming – and it’s as emotionally harmful as it is dangerous. Yet, while the rest of the world is just beginning to understand the depths of depravity to which human beings will sink … those with disabilities have understood it for a very, very long time.

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What happens to a person when their entire world becomes entrenched in fear, shame, and hiding? People with these problems become ill adjusted to social life, forcing themselves into becoming recluses to avoid the hurt. It’s not agoraphobia – but it might as well be. Feeling like everyone is judging you … because they are … is terrifying. There’s nowhere to go and no way to get out of the situation. This, in turn, leads to low self-esteem and depression. Of course, the issue of dramatic weight loss and gain for folks with severe narcolepsy is another problem entirely. Not only does this lead to public humiliation, self-loathing, and eating disorders (even deadly ones), but it also contributes to depression and nightmares, further perpetuating the already existing problems. What do doctors offer?

Exercise!

Yes, that is the magic answer to everything: exercise (and you know it’s true because your doctor’s already told you that, whether or not you have a sleep disorder!!)! And, of course, don’t ever eat out again because it’s bad for you. Well, unless you’re aware of the fact that you’re probably already breathing heavy levels of carbon monoxide, aluminum oxide, and other toxic poisons you can’t escape .. because deep breathing from exercise suddenly becomes a little less healthy. And, of course, trying to eat those healthy, pesticide-ridden veggies, the cardboard-filled oatmeal and cereal, or even those excellent nutrition mixes that actually lie and mislead you on the labels doesn’t offer too great of an alternative. But, let’s just say that exercise is the key. After all, human beings are not meant to be dormant and as I was so readily corrected by a Doctor Mignot at Stanford (a so-called sleep expert … but I will digress on that for a future conversation), humans don’t hibernate! Well … that is … they do sleep more when it’s dark and cold, and they do gain weight in colder temperatures … and humans do historically fill up on food (and food storage), and then eat less during the winters … wait? Isn’t all of that hibernation? Nope … according to what I was told … those actions are just … um … well … ‘something else‘.

But, I digress. Getting back to exercise, it’s an accepted theory that exercise releases endorphins that make people feel better, regulate melatonin and seratonin that lead to better sleep patterns, and of course, burns calories. And, while all that’s all well and good, there are a few problems for narcoleptics (I mean those with extreme cases, like this one, not the PTSD or ‘light’ symptom folks whose narcolepsy magically disappears … like all those other misdiagnosed cases confusing actual narcolepsy). How do you exercise when you’re borderline exhausted to the point of involuntarily passing out? How do you exercise when the blood has stopped pumping through your body, diverted by the brain, and no matter what you do, is not coming back (which thus, leads to extreme joint pain)? How do you exercise when you’re in pain … all the time? (Of course, things like swimming or bicycling might as well be guaranteed death or permanent injury thanks to cataplexy). In fact … a large portion of human weight loss occurs during restful states … well … except in narcoleptics. So … how does exercise help?

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Now, to be fair, I’ve put this to the test – repeatedly throughout the past 20+ years. The results were pretty conclusive: increased weight gain, increased manic depression, rapid onset of anger due to chemical imbalances in the brain, loss of appetite resulting in some severe vitamin deficiencies, bursitis battling both the blood loss and weight gain, rapid declination of hair loss and weakened bones, increased acid reflux, oh yes … and more tossing and turning during the night (restless leg syndrome), as a result of the increased pain (which in turn results in a worse night’s sleep, more weight gain, and more problems). Of course, we mustn’t forget that those endorphins released by exercise cause emotion … and if you have cataplexy, your muscles become weak, exercise becomes exceedingly painful, and the fear is thrust into high gear in a perpetual state of guaranteed failure. But, medical science has not come far enough to accept that their one-size fits all answer doesn’t work. Why? Human beings love having answers. Otherwise, you’d be owed a refund! Doctors don’t like giving refunds … ever.

Doctors have been under diagnosing narcolepsy for years, mislabeling people as lazy, depressed, and other unfortunate conclusions. And, while narcoleptics have been under diagnosed for hundreds of years, the modern ‘fix’ is to over diagnose (or misdiagnose), leading to a series of additional consequences. Even this 2014 article from the Psychiatric Times website identifies schizophrenia as a diagnostic basis for narcolepsy?! Not only are the two disorders completely unconnected in causality, the types of hallucinations suffered by true narcoleptics vary so significantly from schizophrenia that they cannot be remotely intermingled (as outlined in this 2011 article from the NCBI)! How awful is it, that even after medical and psychiatric sciences have distinguished the two disorders as separate and not to be diagnosed together, that this would be published: “Psychosis in patients with narcolepsy can occur in three ways: (iii) as the concurrent psychosis of schizophrenia in a patient with narcolepsy.” (from the Psychiatry and Clinical Neurosciences newsletter). Yet, somehow, uninformed professionals who call themselves doctors continue to treat patients with the improper, humiliating stigmatas that keep people misinformed and narcoleptics hiding in the shadows!

So, now what? Living in fear, depression, social anxiety, and being treated like an idiot by medical professionals who are committing abusive acts of mistreatment and misdiagnosis … well? There’s only one conclusion: further isolation and reclusive behavior.

Narcoleptics have two choices: become a victim of the system, or adapt. From what I’ve seen, most adapt. They pretend to be normal. They hide what they can, when they can. Some are outspoken, but only insomuch as needed to reveal the outward truth of their seemingly ‘passing out’ (to avoid too much embarrassment). And, you live with the hidden monster inside … or the invisible elephant as it were. Your disability is not outwardly visible – so no one knows. Besides, who would actually ever feel sorry for, empathize with, or understand someone who just ‘falls asleep’? Everyone sleeps, right? Have you ever ‘tried’ “not” being narcoleptic? (Yes, I’ve been asked that). Why don’t we just go to sleep on a regular pattern like other, ‘normal’, people? Maybe, if we’d lose some weight and not be so lazy, pretending like we’re in massive amounts of pain all the time, we could get out and exercise like we’re supposed to! Oh yeah, and if we’d “stop feeling sorry” for ourselves, we’d realize our depression was self inflicted and quit using some stupid, rare disorder as an excuse.

And, the hurt continues. It digs deep. It thrashes hearts into pieces. The questions are then asked and conclusions drawn:

What did I do wrong?

Does God hate me?

No one will ever love me.

I am a monster.

I am … alone.

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That’s the reality of a hidden disorder that no one sees. Narcoleptics are experimented on with deadly drugs. There are no readily available statistics, but the amount of money spent on studying narcolepsy, world-wide, is too small to count. Money on sleep latency tests and diagnosis … don’t count. A lot of funds spent on studying narcolepsy resulted in benefits for other sleep disorders, with nothing for narcolepsy. More money is spent studying animals with the disorder, even knowing it’s an auto-immune disorder, than is spent on people. But, no one’s tallying the funds to the actual “real” studies, to “real” outcomes and conclusions for narcolepsy. Why?

No one cares.

Hidden disorder, remember? No one sees it. Pharmaceuticals are making money hand over fist. Even GHB was re-labeled “Xyreme”, to avoid the whole ‘date-rape-drug-lots of people died’ scandal. Lawsuits? The amount of money in lawsuits was nothing compared the continued income stream from GHB. And, nobody knew they were testing it repeatedly on narcoleptics. From amphetamines to ritalin to anti-depressants, narcolepsy is supposedly mostly controllable with a series of drugs whose side effects only include: restlessness (what? for narcolepsy?), weight gain (really?), depression (wtf?), cancer, bowel disorders, and on occasion, death (to name a few). Narcoleptics typically don’t speak up because they’re isolated, afraid, and beaten down.

There are no LGBT marches for people with sleep disorders who can’t live safely around other people … anywhere. Nobody fights against the stereotypical treatment of narcoleptics by the DMV that literally labels narcoleptics as dangerous drivers, ‘just because’. (No, that’s not a joke). No one educates families, work places, doctors, or anyone else. Narcoleptics can’t complain against their doctors because the laws against their wakefulness drugs (thanks to a few abusers and some umbrella law-making by over-zealous enforcement agencies influencing Legislature), doctors are exempt. All of the joys life had to offer are suddenly ripped away. You don’t dare swim, or else you’ll drown because swimming makes you happy … and happiness is bad because it causes cataplexy … and so you aren’t afforded that luxury. You can’t fight back or protect yourself … ever, because anxiety and anger are emotions that cause cataplexy and you’ll fall to the ground helplessly and you don’t have the right to ever protect yourself. Fear … fear is an emotion that you must live with knowing that when it comes, it will take you down, making you more terrified … and so you learn to hide it.

Love is an emotion, too. But, when you suffer extreme cataplexy – extreme love means that all things you cared about will become a part of your nightmare. So … you stop smiling, you stop laughing, and you isolate yourself. Some people get lucky … while others sit at home, crying as they lay helplessly in bed with the pain of no love, hiding their suffering, and living in fear.

What would you do if you had to live in fear, shame, embarrassment, and helplessness for the rest of your life? What would you do if you couldn’t speak out … or scream … or be heard by anyone? Would you throw yourself under the bus to be taken away by idiots with a 300 year old mentality that includes putting holes in your head to let out the demons? Would you submit yourself to a psychologist who hasn’t the full spectrum of ability to diagnose you but would readily fall back on schizophrenia, giving you the wrong drugs and labeling you for life?

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How would you handle losing time? Sleep steals time. Lost memories steal time. What if you couldn’t remember your own childhood … let alone holding your own baby? What if you were never sure again about what was real? What if you had to spend everyday of your life, pretending to be normal, hiding from people, feeling like an ugly, hated Frankenstein’s monster simply because the people wouldn’t put down their torches long enough to listen?

This isn’t a deep introspection into what could be or some delusional rant about people who feel sorry for themselves (although society has geared you to believe otherwise). This is what reality looks like for narcoleptics. This is the dark, emotional underworld that no one hears about. Even those of you who had that “Uncle” with narcolepsy, may have never actually known the depth to which it was eating him alive on the inside.

To you, normal is living everyday, getting up, telling the people you love and who are your friends hello, and heading off to work. You’re caught up with cell phones, technology, and wondering what, new awesome movie is coming out, next. For most people, everyday is just that … another day of life. And, it’s easy to stay in that world. It’s easy to ignore what you don’t readily see. But, it’s there. If you look closely enough … it’s there. You can see the deadened eyes of narcoleptics who must hide their emotions (to avoid cataplectic seizures). You can see the drooped eyes, the worn faces, and the exhaustion from not having slept a good night sleep in 20 years. You can see the behaviors of isolationism, social anxiety, and general depression. But, dealing with that is outside of most peoples’ comfort zones. You live in a world where you trust the medical professionals and highly paid specialists taking your money to be able to take care of those issues.

Unfortunately, that’s not the case.

And, so, the drum beats on. The world keeps moving as the number of narcoleptics keeps growing. The causality for the auto-immune problem is not being sufficiently addressed. Is it the environment? Is it genetic? How come it crosses the boundaries of human and animal? And, at what point might you be at risk?

Would you be surprised to know that right now – you are at risk?

Narcolepsy onset occurs at any age … and at any time. The smaller variants of it do the same (apnea, CFS, RLS, cataplexy, etc.). And, what will you do when you find yourself on the cusp of complete, emotional helplessness and victimization? Will you fight it, or will you join the faceless, silent thousands who live among you? It’s a dark, sad, and terrifying emotional underworld to live in …

But … we exist. We are out there. And …

We are … alone.


(Thanks … hope this wasn’t too depressing. 2017 has been a heck of an unpleasant year thus far and I’ve been trying to find more serious topics to include without all the political nonsense. Narcolepsy is just one area I happen to be an expert in … and I’m not only an expert, I’m a client, too! If I knew how to crowd fund … I’d write you a movie on this that would leave you staggering … because the truth just isn’t out there!)

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