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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117 Comments

  1. nice to know there are professionals with open biases towards rejecting a reasonable diagnosis–

    just imagine if they did that with cancer! oh, the lawsuits–

    patient: “ive got a brownish-black mole the size of my knee and im coughing up blood sometimes.”

    doctor: “go tell someone who cares! now if youll excuse me, i have a practice to run.”

    “NEXT!” this profession is eating its patients.

    Liked by 3 people

    1. Yep!! Would you believe I’ve seen that happen more times than I can count?? Even with cancer once. And several other serious disorders, even freaking dental infections! True story: I ran a stool test on someone and one of the bacteria that came back high is known to be a major player in the mouth/dental realm. I said that I suspect a potential dental abscess (which doesn’t have to hurt). The patient was (understandably) confused; they’d just been to their regular dentist, who hadn’t seen any problem. I sent the patient to the dentist I recommend, who took X-rays and sure as shit, there it was. After the root canals/extractions (this’s happened with several patients), their energy comes back (!). And they swear their brains are sharper and they can think better. You nailed it right on the head 👏🏼👏🏼👏🏼. The profession *is* eating its patients 😳💞💞

      Liked by 5 people

  2. So honest question as a doctor and EDS diagnosee yourself: should a Beighton 4 scoring – but only historical 5 and not currently feeling particularly bendy right now – girl with “benign hyper joint hypermobility syndrome” written on her chart by a rheumatologist who scoffed when she asked about EDS during the dysautonomia diagnosis process bother to get a second opinion? A “friend” might be asking because she might be having this annoying problem lately wherein stupid things like “sleeping” or “walking up a flight of stairs” are twisting/spraining various joints and she might be sick and tired of it. :-p She might ALSO be a bit afraid of being called such a malingerer because PTSD is stupid, she fears being disbelieved if she asks about a second chronic illness, and she wants somebody with credentials to clarify whether a Beighton 5 score is really required for HSD or not so she doesn’t sound like an idiot if she does ask :-p

    Liked by 4 people

    1. 😘😘. That…would almost assuredly be EDS, yes 💜💙💜

      And nope, apparently a Beighton score isn’t even necessary to have some of the EDS subtypes 💞. Some EDS peeps don’t have a Beighton score at all, and aren’t necessarily bendy 💚💙💚. Your “friend” is most likely right, and is anything but an idiot 😉😘❤️❤️

      Liked by 2 people

      1. Huh. Apparently mitral valve prolapse is common with EDS. My grandmother and several of my mom’s first cousins have had severe mitral valve regurgitation and needed mitral valve replacement as complications of that. One cousin is going through the surgery evaluation bit now. Maybe I should try and convince him to ask his doctor about getting tested…

        Liked by 1 person

        1. Oh wow! 💞💞. That would mean that my mom might be EDS, too (I’m already heavily suspecting my dad, because his joints would “crack” very loudly (but painlessly) with every step across the room in the morning). But my mom has the mitral valve prolapse. It’s not bad enough for them to suggest surgery, but then again, I wonder how much better she’d feel if she had it fixed? 💚💙

          There’s a *really* cool EDS blog out there–OHTWIST; it rocks!! So informative. It’s here: http://ohtwist.com

          The author says there are like 6 subtypes, some of which can be tested for, and some of which there’s no known test yet–the more common subtypes just need a good physical/family history and a thorough exam, and the healthcare provider needs to be aware of the intricacies of the current knowledge of EDS. (I mention this in case testing comes back negative, which it will on the more common subtypes; that way, if that happens, you’re not left scratching your head wondering where to go from there.). 💜💟💜

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          1. Oh Twist’s list of all the little signs that can add up to EDS is like a family history. If I don’t have something, a cousin probably does. I guess my New Year’s resolution is going to be to work up the nerve to push for another round of testing…

            Liked by 1 person

  3. I loved everything about this post. You have given hope to so many people – keep looking, and find a doctor who wants to heal people, not increase their wallet. Amazing!

    Liked by 5 people

                    1. HAHAHAHA Yes! You’re hilarious! I laughed out loud. I wonder if there’s a conversion on Google! I can sense a post coming on…..

                      Liked by 1 person

  4. I am a veteran of many many doctors, insurance company adjusters, pharmacists, ER personnel….it took so many years and so much BS (not to mention two attorneys) to get to a place where I have a semblance of a life, I always wondered how the “fakers” did it. Like maybe they could give me some helpful hints on how to get the care I needed.
    On the flip side, I remember when I was still working and it amazed me how much effort people put into NOT doing their jobs.
    It’s too bad those rotten apples spoil it for the rest of us!

    Liked by 3 people

    1. Amen, Dearest Dude!! 👏🏼👏🏼👏🏼😘😘. I don’t know how the actually-faking do it, either 😔. I’m not sure if it’s so much their “talent” level as much as it is their luck of the draw, in getting matched with a particularly inept healthcare provider 😳. Kinda like the type that you ended up getting–the ones who also wouldn’t know a genuine case when they saw one 💐💐. Yes! 👏🏼👏🏼. Helpful hints would be, well, umm, helpful! 👍🏼😁😘❤️. And yep, so many people put more energy into gaming a system (whether it’s work, welfare benefits, disability benefits, elections, even getting through school (as evidenced by the strictness of our test-taking rules/procedures!!)), than they did just going through the system in an honest way. But nooooo, some people are “special” (I.e., entitlement mentality, with side dishes of materialism and laziness) and those systems are for “everyone else”, but they’re “above all that”, of course, which is why the system must be as rigorous and fortified as it is 💙💙. I also think it’s possible that many more fakers came before us, so that by the time we needed the system, it was a fortress 😳. Couple that with the incompetence of many healthcare providers and we end up with the disaster we have now, where real people are suffering needlessly 😔💐💞💞

      Liked by 1 person

    2. (Pardon me, Laina, but I want to ask King Ben’s Grandma if I can use a brief excerpt from her comment above. Please feel free to delete this comment if you think it’s inappropriate in some way. Sincere apologies if you do.)

      Hi King Ben’s Grandma, I really loved this: “… I always wondered how the ‘fakers’ did it. Like maybe they could give me some helpful hints on how to get the care I needed” and think it would be a perfect quote to open the post I published a little while ago (I want to add it to the beginning of the post). Of course, I wouldn’t want to do this without asking your permission, and won’t if you’d rather I did not. I could also take it down later if you change your mind. But I do think it would be absolutely apropos. What do you think? 🙂

      Liked by 1 person

  5. Someone needs to speak out about this, for being accuses of malingering or faking when you really are struggling with something which ‘appears’ invisible to someone else is just one more added stress you DON’T need. Until someone lives inside your body they just dont know. I gave up trying to describe my complex symptoms to anyone a long time ago. Slowly they are resolving but it takes a lot of research, trial and error and self knowledge to get there, and I have seen so many others lead astray or misdiagnosed. ❤

    Liked by 4 people

    1. Absolutely 👏🏼👏🏼👏🏼. Yes yes yes 💗. That’s exactly my experience, too ✨. You nailed it! If it makes y’all feel any better, I practice from a position of belief unless proven otherwise (and only about 4% of my patients have been found to be non-genuine, which leaves 96% who are genuinely suffering/sick when they come in!! And nearly *all* had been brushed aside and written off by an average of *10-12* other doctors *each* before finding me), and I am damn sure to speak up at my conferences and such about this whenever it’s relevant to the conversation (and I’m kinda liberal with the relevance part; I seize opportunities 😁😉). The world is changing for the better, at least outside of the insurance world. That’s the sticky part; insurance will always behave that way; their stockholders demand it. Outside of insurance, however, in the truly private realm, things are changing 💓💗💓💗💓

      Liked by 3 people

        1. Thank you! 🌺🌺. I figure I’m just doing what *every* doctor should be doing 👍🏼. What’s the point of practicing a healing art/science if the patient ceases to be a real person in the provider’s eyes? I never understood that. I can say that I never saw people that way 💙. It’s very necessary indeed 💫👏🏼💫

          Liked by 2 people

      1. My muscle disease symptoms started at 8 years old. It was not until I was 30 years old and had seen over 50 doctors being bumped from one to the next that the Mayo Clinic finally did a muscle biopsy and even then she told me she did not think she would find anything and was shocked to find I had a muscle disease. I sought out experts in the diagnosis I received and was put on a study at the NIH and one in canada and one in england. The doctor in england is still on my case and seems determined now after over 12 years to find out what has caused this, he is searching for the genetic mutation.
        I’ve put a lot of thought into the damage so many did by telling me I was just stressed or depressed and had anxiety which was in fact true but did not change the fact that I do have a muscle disease. I am just glad there are people out there who are willing to dig deeper and see deeper. I have not ever read through all of your comments and forgot you are a doctor.

        Liked by 3 people

        1. Wow, girl, your story never ceases to amaze me, and I’m so excited that you weighed in here! 😘😘❤️. I was secretly hoping you would 😘😉🌺🌺. Thank you so much for sharing your story, luv; it’s such an important one to tell. The whole comments section should be required reading for ALL med students 🙌🙌🙌💖💜💙💚

          Liked by 1 person

  6. I think the problem is, if you have an unseen condition in other words if it is not obvious you are malingering. I personally suffer from anxiety and depression, I am 5.11 stocky built, so I am judged healthy but no one sees behind closed doors when I break down in tears for no apparent reason. they only judge what they can see!

    Liked by 5 people

  7. “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”.  : Most of them will rather opt for an easy fix rather than hitting the axe at the roots; but I really can’t fault them coz some of them don’t really know themselves either: What you cannot do for yourself you can’t do for another. It takes courage to look deep with ourselves. Nice post.

    Liked by 3 people

    1. Amen, luv! 👏🏼👏🏼👏🏼. I can’t fault them much for not knowing; healthcare providers operate the way they do for 2 reasons…

      1) they weren’t taught to go much further, so they legitimately don’t know how. Most of what I know and do I learned *after* med school, both from some really cool post-doctoral classes and conferences, and by teaching myself from advanced textbooks and research papers. Of course, that is extremely time-intensive, and most providers don’t have the time to do that, and

      2) the insurance companies/government entities do not approve the funds to compensate doctors or patients for further assessment, so if it were to be done, the patient must pay with their own funds, and most don’t have the resources to do that. If the third-party payors would simply wake up and realize that these measures are indeed necessary, that would help a lot. But it seems as though they’re going the other way, shifting coverage to other groups and procedures.

      And it’s also true that many patients will opt for an easier fix as well. Much of that is because that’s what society at large is taught to do. So it’s kind of a mutual thing.

      I’m really happy you enjoyed the post 😁😁❤️❤️

      Liked by 2 people

  8. I think there is a huge misconception about “psychosomatic” and “it’s all in your head”. It is perfectly possibly that bodily symptoms are caused by something in the brain and have no organic cause that you can pinpoint. That is not the same as someone imagining them or making things up. It can be very difficult to find the cause in the brain, or even impossible, to the great frustration of doctor and patient. The brain is such a complex organ, and there is still so much going on that we don’t know. But people hear “psychosomatic” and think “imaginary”, and that can cause terrible misunderstandings and an erosion of trust between people and between patient and doctor, particularly if the the doctor diagnoses a psychological cause and the patient thinks that the doctor thinks that they are making it up and get angry. Of course, doctors can misunderstand psychosomatic causes in the same way and dismiss them as factitious (I believe that’s the technical term). It’s a minefield basically.

    Liked by 5 people

    1. This, so much!! 👏🏼👏🏼👏🏼
      Indeed, the term “psychosomatic” refers to any body symptom originating in the brain, and that’s quite common, actually 😊💓💓

      The problem is–and you nailed it–that it has taken on a meaning synonymous with “it’s all in your head; you’re imagining things; it’s not a legitimate problem”. And it’s indeed a form of dismissal, invalidation. It’s amazing how many healthcare providers use the term exactly that way 😳😳.

      What’s particularly disturbing is how the providers often render this diagnosis without doing much to confirm. “So you say the problem is in my brain; tell me more, doctor”, and they don’t, because they can’t. If the issue doesn’t show up on a tiny basic/routine test panel of 7 markers, then “it must be all in their head” but no finger is lifted to perform any further assessment 😳. A mine field is right! 👏🏼👏🏼👏🏼. Thank you so much for sharing your thoughts; your points are excellent 😘❤️🌟❤️

      Liked by 1 person

    2. In my original label of psychosomatic it was determined I was infact making everything up for attention andhe stated my pain was niot real.BUT in the true sense of things that occur in the brai and wat the body feels I wholeheartedly agree which is why i did somatic therapy!!!! The original doctor misused the word to discount what i was experiencing which was a combo of early onset muscle myopathy and yet to be diagnosed ptsd and tourette syndrome. Very very interesting therapy finding where you felt trauma and how it affected all aspects of the mind and body. Now if i could just use this to stop the seizures i have!!!!!
      Basically though no doctor can figure someone like me out in their 10 min block of time from Tourette syndrome/anxiety and muscle disease and bone disease and lyme disease and ptsd i mean truly i’d need a month of someone’s time to sort out what is what, where the root cause is, how and wat to treat fist, etc

      Liked by 2 people

  9. Wow, Laina, I’m looking through the comments here … inspiring!!!!

    Thanks for writing this post!
    👍🏻👍🏻👍🏻💕🌈🎂🎉🙌🦍

    (Oh, and I think I need a better pen name. As much as I like Autistickish for a blog name, it just looks cumbersome in reference to a human. 😊 )

    Liked by 1 person

  10. “This is because I yin-yang between body hyper- and hypo-awareness.”

    Oh yes, I have times where I think I must be fooling myself because I feel decent, and then I get hit with flares of pain, fatigue, etc. haha Today my ankle nearly gave out on me when I made a small hop on pavement to avoid a landscape worker. Seriously?!

    After seeing what my family members and friends have gone through with doctors and the system*, I’m quite content atm to manage my issues on my own. I’m not stuck in bed and am still capable of going about daily life, albeit maybe miserably at times. Just thinking about going through the process of finding a good doctor etc is exhausting.

    *I had one friend years ago who figured out she had lyme disease before it was well known. The doctors couldn’t figure out what she had or wouldn’t believe her on what it was etc even though she was hobbling around on a cane. She wound up treating herself and eventually became an herbalist.

    Liked by 2 people

    1. Oh wow! Hats off to you and your friend 🙂 🙂 That’s pretty much how I got into what I’m doing; I was able to cure my own long-standing adult acne and depression; I was even able to get off Zoloft (!). Very lucky, but also took some work. I remember making my first naturopathic-like discovery and thinking, “omg you mean to tell me that I *don’t* necessarily need antidepressants the rest of my life?? That these foods and supplements can help, too??” The answer is, in many cases, YES. (Each case is different, though, so please nobody take this personally as treatment advice!) And my second thought was that I was pissed off at the establishment for never telling me this stuff. Not one of them had breathed a word about nutrition or nutrients or anything. And my next thought was, “I’ve got to share this with the world, whoever’s interested!” I felt like people at least needed to know their options. I had to get a degree in order to be “taken seriously”, though. So, I did. That in itself is a tough, tough road. And it will screw up one’s health, if there’s anything in early stages or on the horizon. And I’m so far from rich (or even comfortable) that it’s not funny. I don’t do insurance, so I don’t live like most doctors do. But I think it’s been worth it. I sleep at night knowing my patients are happy. 🙂 🙂

      The process of finding a good doc *is* exhausting. Very much so. I think it’s important to find one who’s battled with chronic conditions themselves, and had to go through everything they’re about to ask you to do. The dietary changes, the supplements, and so on. So that they know what it’s really like, and how to help people through the pitfalls. Because it’s easy for them to sit back and say, “ok, you’re going to need [x] type of food plan and take these 8 supplements every day” and then it’s another for them to have actually GONE through it.

      –Info– 😉

      When finding a good doc, I suggest asking 3 questions:
      1) What’s are the 3 most recent post-doctoral classes you’ve taken or conferences you’ve attended? (I.e., what was the subject matter?)
      2) What chronic conditions they have (it’s OK to ask this of a doctor you’re trying to build trust with; it gives you a better idea of what they face and what they’re likely to suggest to you)
      3) What motivated them to get into this specialty area?

      (Answers: 1) should be something from the Institute for Functional Medicine, and they should have gone to their annual conferences; hopefully they’ve avoided crackpots. Institute for Functional Medicine is approved by the APA as continuing education (CME); 2) could be any autoimmune, Lyme, or any chronic condition; 3) should be something along the lines of wanting to do more than drugs or surgery to get their patients better, or perhaps wanting to spread their own improvement and empowerment with others; it should NOT, however be something like “I want to help people” (too generic and textbook, and it’s a cop-out) or anything about trying to get away from insurance (then you know it’s merely a business model, with the quality of patient care as a second priority, which you don’t want)) 😉 ❤ ❤ ❤

      Liked by 1 person

      1. Sorry for the slow reply, but it has been a busy week here! It is difficult sorting out the information, but when you find something that works…it is worth it for sure. 😊 Sometimes I think it takes far longer for me to figure out some of these things because of not being sure of how I feel, whether it’s alexithymia-type stuff with the body or just not knowing what is “normal.” (Which is why the whole hEDS thing is throwing me for a loop…and every other thing I have found out about myself. 😂) I will definitely keep those things in mind if I need to go searching!

        Liked by 1 person

        1. Not a problem at all, my lovely! Busy is good! 👍🏼👍🏼. I’m not going anywhere 😉😘. So true, everything you said, particularly the part about “normal” – what *is* normal, anyway? Do “normal” people even know? How does one know that s/he is? HEDS is definitely a loop-thrower! Best of luck on the Info-Hunt! 🍀🌷🍀💞💞

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  11. Was telling to myself while reading your post “This is a very important topic. I’ll look deeper and more seriously into my symptoms.” And then I read the last words of the post and had shivers. Thank you for sharing.

    Liked by 2 people

  12. Our medical system is jacked up beyond belief, but I think and know it can get better. It needs to start with our education system… Long ass comment about that another time, but basically our general lack of knowledge about sickness and health.. We need classes at an early age that actually help people understand basic medical problems and when to go to the hospital. My mom is a Nurse practitioner, my grand parents were RNs, and I am by no means medically certified in anything, but because of my family and their history I know the basics. Stuff my peers have no idea about that I thought was common knowledge. Who can’t start an IV??.. Okay maybe that’s a little advanced, but the problem I have noticed from my families stories are the basics.

    One patient went to the ER because she was “sick”…. She had been throwing up for over a month straight, but hadn’t lost a pound… Yeah she was pregnant… We as tax payers paid a whole ER visit because she didn’t know she was pregnant… Is she stupid? or did or education system fail her? First thought is that she is dumb, but my mom has hundreds of similar stories. She works in a small town.. Imagine how it is in a large metro area? (I’m sure you know) Each visit costing thousands a dollars. Fixing the education system to include basic medical information could save us millions of dollars and lives.

    Then there are the people who endure because they don’t know that something is wrong with them. Or that there is help out there.. The whole thing is sad and it swings right back to education. We spend way too much money killing others for freedom while our people are locked in their personal cages afraid of the world….. Okay I’m stepping down off the soap box…

    This was an amazing piece and well said. Thought provoking , see above. : )

    Liked by 2 people

    1. This!!! 👏🏼👏🏼👏🏼. Totally agree 👍🏼😊. And I think classes on basic health like how to eat well (updated for the current science, not the shit from 50-60 years ago) and how to read labels and whatnot would be good, too 😊. The value of preventive and wellness care. You’re so right, in everything you said! I enjoy your soapbox immensely 😁💗. Your comment is awesome and also thought-provoking! Excellent discussion!! Thank you so much for adding your voice 💚💙💜

      Liked by 1 person

  13. I relate to this post. For years I was misdiagnosed with rapid cycling bi-polar illness and stuffed with toxic medications. When the meds didn’t work I was treated like a GOMER. Later I was misdiagnosed with schizoaffective disorder which I knew was wrong because I met none of the criteria. I refused to take the medication and my shrink dropped me. Finally, in 2012 I was diagnosed with a dissociative disorder and it clicked. My life started making sense and seven years life is feeling saner. But the medical profession still questions my diagnosis because it doesn’t comport with the less expensive behavioral construct our managed care system prefers. When these clinicians say it’s all in my head the only response I have is, “Where else would it be?” My take is that anyone who fakes a mental illness to get a monthly check that is 100 percent less than the actual cost of living has a mental illness of some sort.

    I can’t help but resent the fact that it took thirty years for me to get the right diagnosis because of behaviorists who want to believe they can treat every mental illness in 90 days.

    Liked by 3 people

    1. Thank you so much for adding your voice, my friend! 😊👏🏼. I love, love, love your response to their ridiculous statement!! 👏🏼👍🏼👏🏼. And I agree wholeheartedly with everything else you said as well! Fantastic comment; your thoughts are right on! 💚💙💜🙌🏼

      Liked by 1 person

      1. I worked for five years in a long term Freudian based hospital. We used behavioral interventions to help patients cope with the stress of self discovery. We didn’t consider ‘distress tolerance’ a cure; we saw it as essential to achieving one.

        I’m glad you liked my comment! 🙂

        Liked by 1 person

  14. Reblogged this on Health Matters For Asperger's Women and commented:
    I am delighted to discover this AS blog written by a doctor on the spectrum: thesilentwaveblog.wordpress.com Discovering it was accompanied by that happy feeling you get when someone gives you a great birthday present. Someone who has been disbelieved, as we all have, who had to find the answers herself. I totally relate to that, and share with her the sad history of being an undiagnosed coeliac for decades. Health care and diagnosis should not feel like a battleground, should not feel like a shaming experience, should not take enormous amounts of our often slender energies. Sometimes the hoofbeats are zebras, not horses..

    Liked by 3 people

    1. Thank you so much for sharing my post! The feeling I got reading your beautiful intro comment was just like the one you described! I agree wholeheartedly with everything you said! 👏🏼👏🏼👏🏼👏🏼👏🏼😍🤗❤️❤️

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  15. Reading your post just made me realize even more that in many cases profit is prioritized over the welfare of the people…be it insurance company or health institution. Sad. And I cannot help but give credence to the claim that it is likely cancer treatment is more about money than anything else.

    Liked by 2 people

    1. You totally nailed it! 👏🏼👏🏼👏🏼. Absolutely spot-on 👍🏼. Case in point… My uncle was diagnosed with cancer of the tongue and given a 95% chance of survival. A year later, despite having the unholy trinity of surgery, radiation, and chemo, he died. He was living with my parents during this whole ordeal, and eventually my parents saw a statement arrive in the mail that detailed the entire case in terms of finances. The total was over $750,000 USD. Three-quarters of a million dollars, for one person.

      Meanwhile, I personally know 4 separate people: 3 Americans and one Canadian, one with lymphoma, 2 with thyroid cancer, and one with *pancreatic* cancer (which has less than a 1% 5-year survival rate), who went to Mexico for their cancer treatment. *None* of them had surgery, *none* of them had radiation, and *none* of them had chemo. *All* of them are alive, healthy, and in complete remission, having been checked out to reveal zero trace of cancer in their bodies.

      The pancreatic cancer guy is the Canadian; he was told by his doctors there that he had about 3 months to live and that he should go home and get his affairs in order. (Americans, this is what would happen under a public system. Not too much different from what it’s like now, except that there’s a lot of waste at the administrative level, which leaves less funding available for patients. Not that there isn’t waste at the top level of insurance companies too, but you do have the choice to switch companies or plans or, like me, remain uninsured, which in itself carries a lot of risk.)

      Anyway, the guy with pancreatic cancer said “hell no, I’m going to Mexico”, and something like 8 years later, he’s just fine.

      Cancer runs in my family, too, and I know where I’m going for treatment if I ever develop it 💗👍🏼💗👍🏼💞☄💘

      Liked by 1 person

  16. I would love to hear your take on something. I have a theory that fibromyalgia is just an adult presentation of the sensory side of autism/Asperger’s. When you have ASD, which often goes undiagnosed in girls (due to presenting differently than in boys), and Fibro, which is found predominantly in women, it just makes logical sense to me that a fibro dx in adulthood could mean a missed ASD dx. Enduring the stress of sensory overload over a lifetime means a lifetime of tension and cringing and dropping your head to avoid lights, and all of this could contribute to the pain in fibromyalgia. Thoughts?

    Liked by 1 person

  17. Bibbity-Boppity-Boo was my favorite part! I just busted out laughing. I haven’t heard that in forever. This is tough subject matter for me so it’s nice to get the comic relief.

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