Autism, body awareness, and ‘malingering’

The reframing never ends, it seems.  At least, it has become a new universal constant in my life over the past year and eight months since discovering that Asperger’s/autism explains everything.

That’s what reframing is, really: the process (and make no mistake, it’s a process) of reviewing your life in your head and experiencing chain-linked “a-ha” moments to the diagnostic criteria.

My new chapter of the reframing story was inspired by Autistickish’s wonderful post (actually, three – here, here, and here) on their equally-wonderful blog, a post series about accusations of malingering, or “milking”, “playing up” or even “faking” one’s symptoms or “complaints” in order to blood-suck sympathy from others.  Whether they’re loved ones, casual friends, medical providers, mental health professionals, or strangers on the street, it does not matter.

There’s so much I have to say about this.  It’s jumbled and chaotic and voluminous, but I’ll do my best.  🙂

I should start by providing the proper orienting background.

My position is somewhat unique.

I’m a doctor, as some of you know.  I run lab tests and solve puzzles.  Logic is my go-to ally, as I run lab tests, interpret them deeply under my Aspergian/autistic laser beam, and uncover and resolve biochemical reasons for the longish list of nebulous concerns.

I’m also a patient.  One with chronic symptoms of long-term conditions that had spiraled out of control and over the rainbow, beyond hope, or so it seemed.  My shoulder gets proverbially tapped on a fairly consistent basis by conditions like EDS, multiple autoimmune disorders, post-traumatic stress, depression, and a Non-24 chronorhythm sleep disorder.  (Go me.)  😉  It took a long time to identify these; all but depression were diagnosed only within the past two years.

It’s been a lot to take in.

And, to state the well-known, I’m on the Asperger’s/autism spectrum myself.  (The show “The Good Doctor” isn’t actually all that far off.  In fact, it’s well within the realm of possibility.  Sorry to burst the mainstream media’s bubble, as well as the assumptions made by “charities” who, at least for the duration of this post, shall not be named.  But you know who they are; hell, we all do.  They won’t go away.)

When these three elements are combined, what do you get?

Bippity-boppity-boo, that’s what! 😉

Actually, you get some thoughts.  Lots of them.  And they do jumble, because it’s impossible to separate the Asperger’s/autism from the love for human physiology, for one led to the other and makes it possible.  And it’s impossible to separate those two elements from the chronic conditions, because they merge within me and become part of my integrated experience.

And the kind blogger, Autistickish, inspired me (in writing) to share that experience and the opinions that come with it–on here.  A big shout-out thank-you to them for suggesting it!  ❤

In med school, I had an instructor whose sole mission in life was to convince us that practically everyone “out there” was a malingerer, and he wanted to make damn sure we knew how to spot one.

I get it; I understand his point: there are fakers out there, plenty of them, more than most people realize.  Their issues may be too minor to speak of, or they might not exist at all.  And yet, those people consume resources.  They cost everyone else money.  They take up space on providers’ appointment books.  They take spots you deserve.  They’ve got everybody fooled, drawing benefits they don’t need, receiving sympathy from their partners, shirking responsibilities at home and to society.

(Mind you, I’m referring to those who are genuinely abled, not those of us with disabilities, even invisible ones.  I know all to well–and others should know me well enough by now, too–to know that I’m fully excusing them/us.  I’m not talking here about those simply accused of faking, I’m talking about those who actually are faking–or otherwise milking a minor problem into something much larger than it really is.)

But there’s another side to the story.  No matter how flat you make a pancake, it still has two sides.

I can only speak from an American perspective, because that’s where I live and practice.  Here, we have private health insurance, which is supposed to help out with medical care.  (It doesn’t always, and in a country such as ours, with our demanding, entitled collective nature and our 320 million people, most of whom are not in wonderful health and have never so much as read the ingredient label of the food they’re about to put in their mouths, I’m not sure a government-administered system would do much better, but I digress.)

Both systems must ration care.  A system that fails to do this cannot sustain itself, and will dissolve.  Both systems utilize measures by which certain procedures are deemed medically necessary and approved for coverage, or deemed unnecessary and denied.  Both systems have overseers to satisfy; in the public system, that’s the taxpayers, while in the private one, it’s the insurance company stockholders.  Same game, different costumes.

These cost-control measures work much like an email spam filter.  If a submitted claim is thought to be legit, it passes, approved for the inbox.  If it’s thought to show signs of fakery, it gets dev-nulled into the spam folder.

Much like an email client, insurance companies are not immune to error.  Sometimes the spam filter gets a little overzealous and a legitimate claim gets dev-nulled into the ether, never to be seen or taken seriously.

Why?

The insurance company thinks you’re one of the fakers.  Never mind that you’re not.  It thinks you are.  The insurance company becomes your judge, jury, and Supreme Court.  There’s even an appeals process, but it’s laughable, if it would even be funny in the first place.

Internally, they use the word “malingerer”.  It even sounds sinister.

The doctors try to downplay it first.  “It’s all in your head,” they “reassure” you.  “It’s just part of getting older.”  Or, if you’re “lucky”: “it’s just depression; here’s an antidepressant medication.”

Pfffft.

We know that doesn’t Make It All Better.  Because in most cases, that wasn’t the problem in the first place.  To find the real problem requires more digging, digging that is indeed possible.  But since They have already determined that you’re not going to die, and they’ve found a (bullshit) “explanation” for your issue, insurance companies won’t agree to any further investigation.  “Medically unnecessary,” comes the stamp on your file.  Along with an equally-evil-and-devastating word: “psychosomatic”.  (Pffft.)  And any protest or further effort from you gets written off, usually under the malingerer term.

It’s hard to win.  You almost can’t.  Not if you have a chronic condition that must be “managed” or “takes too long” to resolve.

(That’s when they seek out other options, find me, and step into my office.  My roster is full of people who have broken down in tears of relief when I utter three simple words: “I believe you.”  Their response is a single word: “finally!”)

I respect–and personally like the instructor who talked about malingering.  He was like that overprotective parent who inspects every piece of Halloween candy because they’re convinced that some sicko put razor blades in the apples or a hypodermic needle into a Three Musketeers bar.  He’s actually a great guy, who had operated a Personal Injury/Workers Compensation practice in New York City, so I’m sure he’s seen his share of people who were faking it, and I’m sure he took it personally after discovering that a few of them had burned him.

But I’m glad that although his information was valuable, and I filed it away in the back of my mind, I didn’t dwell too much on it or take it too much to heart, because I knew that there are many with invisible disabilities.  His view is through his personal (unusual) lens, which isn’t exactly representative of the world as a whole, so I didn’t let it cloud my own.

Who’s to say who’s faking it and who isn’t?

Not all who suffer are attention-seeking.  And if you’re on the Asperger’s/autism spectrum like I am, you may be alternately “over-” and “under-” sensitive to your body.  I had Celiac Disease for over 15 years (probably closer to 20) before it was diagnosed.  I had EDS, AS, and Non-24 my whole life, all formally diagnosed in the past 12 months.

The kicker?  Except for the AS and the post-traumatic stress, I had to diagnose every last one of them.  I had to order the labs myself.  Even in the case of AS, it was I who connected the dots first and simply had my findings corroborated with a PhD psychologist.

Before I had identified my issues, they hadn’t been found.  Would that have made me a malingerer?  I don’t know, because I avoided conventional medical providers like the plague, except in case of urgent situations, which usually have obvious, open-and-shut roots.  Shudder to think what They would’ve written in my file, though, had I got through The System.  Shudder to think how I would’ve been treated on every subsequent, frustrated visit.  Ugh.

The other kicker?  Every issue I had begun to suspect was not only correct, but it was also much more significant/extensive than I thought.  And it had progressed much further than I could’ve imagined.  This is because I yin-yang between body hyper- and hypo-awareness. Both cost; hyper-awareness has cost me my credibility with healthcare providers, whereas hypo-awareness has cost me a lot of my health.

It is indeed tough to win.  The game is somewhat rigged, and the house always has the advantage.

I should know, from multiple angles.  Some of you probably do, too.

The System is disheartening at times.  Many (not all!) conventional doctors actually suck.  Their diagnostic skills are shizz.  But there are some of us out here whose approach is to believe you unless proven otherwise.

I get it.  And I do believe you.  ❤

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