I am NOT a Lab Rat!


MonGrumpHeadSince people can TALK –
how about asking us?

© Madelyn Griffith-Haynie, CTP, CMC, ACT, MCC, SCAC

Not my first Rodeo

I have written about my love/hate relationship with science before and I’m sure I will again.

I think I did a fairly lousy job of hiding the fact that I was more than a little disgruntled about what I call “the Blind Men and the Elephant problem” the last time I mentioned it – but all bets are off on Monday Grumpy Monday!

I’ve been singin’ this song for over 20 years now, and I’ll keep singin’ this song until things change or until I die, whichever comes first — hoping that somebody somewhere will read with a brain engaged and get my point.

I’m R-E-A-L-L-Y grumpy about the negative impact on OUR lives of their confirmation bias.

Verification through investigation

Don’t get me wrong. I DO agree with most of the ever-so-cautious-in-their-speaking doctors and scientists as they close ranks about the importance of scientific verification of our suspicions and theories. 

More than a few of them are solidly, if relatively silently, in our corner – and I’m grateful for them.

I DO NOT agree with how things have been playing out, however.
We don’t want or NEED verification of our experience.

are-you-listening

source: click image

We need doctors and researchers to listen to us seriously, collate our information, and DO something about it in real time. 

I am so tired of reading about a “new” study with “new” discoveries that those of us who go to conferences and participate in chat groups have been discussing for 20 years.

Don’t scientists know that these resources exist?
That they are allowed to come too?

Or is it something more insidious – a thought, perhaps, that they have nothing to learn from speaking with US?

Can they really believe that until something is journal published and replicated, originally derived as the result of a double-blind, placebo-controlled study, it’s simply a rumor unworthy of investigation — no matter HOW many people report it???

  • I keep hoping that scientific investigation into the executive functioning disorders will e-x-p-a-n-d our knowledge-base, not simply deepen the ruts of what they think they already know.
  • I keep hoping that doctors and scientists will POOL their resources instead of ringing in on who’s right and who’s wrong – ever so cautiously polite, of course.
  • But more than ANYTHING, I keep hoping science will open its closed mind about the value of that demonized “anecdotal” evidence — or AT LEAST take it into account when they design their studies.

Don’t forget that you can always check out the sidebar for a reminder
of how links work on this site, they’re subtle (scroll UP for it) ==>

 

How can you verify what you don’t investigate?

Source: click graphic

Source: click graphic

“There is no evidence supporting what you are saying.
I want to see double blind clinical trials”

Hey guys — until you listen to what we report and investigate it scientifically, there will BE none of that “evidence” that you have been taught is the only kind that counts.

Duh!

And while it’s painfully clear that your professional standing is what is important to YOU, our entire lives are pretty darned important to us!  And we are SO tired of struggling, limping along despite many gifts.

At least I am.

I’ve been at this for over twenty-five years now – and progress has been dismal. At the rate you’re checking things out, many of us will be dead before you “prove” what we continue to report.  At least I will.

And only once you “prove” there’s a problem, will you move on to attempting to solve it!

  • I can’t believe how long it took the field to get a clue about ADDults.
    An entire generation struggled NEEDLESSLY –
    and entire lives will never be what they might have been as a result.
  • You are only NOW beginning to pay attention to the
    dopamine/estrogen/menopause/brain-fog connection.
  • You are STILL not taking the difference in how EFDs manifest in women seriously.

WHY THE HECK NOT?

In case I have not been clear:

STOP using protocols developed for animals that can’t give verbal input as if they were all equally valid for human beings.

STOP speaking to us as if you know what’s going on in our lives
better than WE do.

STOP blowing off what we say as “merely” anecdotal.
It’s patronizing, beyond maddening, and lousy for YOUR profession as scientists.

STOP indulging in the medical/scientific version of “the thin blue line.”
Speak UP and change your fields for the better.

 Entire LIVES are at stake here.  Step it UP.

Let’s hear it from YOU

I invite you to dump YOUR Monday grumps and gripes
in the comment section below each of my own – related or NOT.

As long as you don’t make individual people wrong, and do your best to avoid the dreaded “should” word, I will approve all comers (link-spammers shot on sight, however).

© 2014, all rights reserved
Check bottom of Home/New to find out the “sharing rules”

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IN ANY CASE, do stay tuned.
There’s a lot to know, a lot here already, and a lot more to come – in this Series and in others.
Get it here while it’s still free for the taking.

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About Madelyn Griffith-Haynie, MCC, SCAC
Award-winning ADD Coach Training Field founder; ADD Coaching field co-founder; [life] Coaching pioneer -- Neurodiversity Advocate, Coach, Mentor & Poster Girl -- Multi-Certified -- 25 years working with EFD [Executive Functioning disorders] and struggles in hundreds of people from all walks of life. I developed and delivered the world's first ADD-specific coach training curriculum: multi-year, brain-based, and ICF Certification tracked. In addition to my expertise in ADD/EF Systems Development Coaching, I am known for training and mentoring globally well-informed ADD Coach LEADERS with the vision to innovate, many of the most visible, knowledgeable and successful ADD Coaches in the field today (several of whom now deliver highly visible ADD coach trainings themselves). For almost a decade, I personally sponsored and facilitated seven monthly, virtual and global, no-charge support and information groups The ADD Hours™ - including The ADD Expert Speakers Series, hosting well-known ADD Professionals who were generous with their information and expertise, joining me in my belief that "It takes a village to educate a world." I am committed to being a thorn in the side of ADD-ignorance in service of changing the way neurodiversity is thought about and treated - seeing "a world that works for everyone" in my lifetime. Get in touch when you're ready to have a life that works BECAUSE of who you are, building on strengths to step off that frustrating treadmill "when 'wanting to' just doesn't get it DONE!"

8 Responses to I am NOT a Lab Rat!

  1. Pam Augspurger says:

    PREACH SISTA! Do you feel like you need to wear a sign explaining why you might be a little “different?” I’m tired of people thinking because I don’t fit their mold that I’m some kind of anomaly.

    I’m glad I have support from those who understand but tired of this majority who don’t. It sucks! Even in my own house I have to print articles off for my own family to read so they realize this is not something I’ve conjured in my own brain! The skepticism remains. I’m on an island. (Except for my 18 year old son who, bless his heart, is my not-so-mini-me! He goes to the gym at midnight.)

    ADD, DSPS and now the real kick in the ass????……drum roll please…….perimenopause! Now I’m a complete kookoo for cocoa puffs mess with little understanding in my immediate world. I feel like I need to preface everything I do with “pardon my insanity but my chemicals have been unbalanced my whole life, my body clock isn’t on Eastern Time and now my hormones have robbed me of what little ability to concentrate I ever had. Except hyper-focus. Yes, that I’m good at.”

    Most of my frustration comes not from myself but from lack of understanding from the rest of the world. “Why can’t you just change. Why can’t you get up earlier. Why can’t you….be like me?” Well, jackass, because for whatever reason, this is what God chose for me. I can handle it. But only if the rest of the world I’m forced to live in can understand. Understand that this is me and stop trying to change me! Accept me! And stop viewing me as lazy!

    Maybe I got off subject but I sure do feel better! Thank you Madelyn for giving us an outlet and a safe no-judgment haven!
    Pam

    MGH COMMENT: I edited the above ONLY to add some white space for those who have trouble staying tracked through long paragraphs.

    Like

    • You’re welcome Pam – but I must admit I need the outlet more than most, since I have my frustrations and all the comments rattling my brain from clients & colleagues over the years.

      I am SO with you on the majority of frustration stemming from comments from others – those I call “the just and only crowd” (I stop listening and start tongue biting the minute they use one of those phrases they ALWAYS seem to use beginning with “If you’d only . . .” or “But it’s JUST . . .”

      LAZY?! How can we possibly be viewed as lazy when we must “work twice as hard for half as much” (Hallowell’s quote)

      What our neurotypical friends and family don’t seem to realize is that those negative comments stick around and haunt us for years. Since startle shut-down generally keeps me, at least, from responding in real time, my brain keeps feeding me come-backs. Maybe our friends and family think they’re helping, but they are really insulting us with the idea that we haven’t already tried what they suggest. grrrrrrrr

      WAIT ’til they get old – when cognitive speed begins to slip and slow for THEM. THEN they’ll realize how hard it’s been for us our entire lives.

      Thanks for ringing in here. Nice to know we’re not alone, huh?
      xx,
      mgh

      Like

      • Pam Augspurger says:

        Thank you for the white space Madelyn! I was on a roll! Couldn’t stop to format! And since my rant, I have talked to my mother who would pretty much like to kick everyone’s rear who is “picking on me!” Bless her! The only meds I take are adipex for my ADD (didn’t like the other stuff. Vyvanse would quit working every time after upping the dosage. Plus it gave me the gloom and doom feeling.) I also take Zoloft and Wellbutrin so I don’t hurt people who get on my nerves. 😉 Have been on Zoloft for years. (Pre ADD diagnosis)

        I’m on a mission to prove that the me the world gets ain’t so bad! In fact, I’m really creative! Imagine that! Someone with ADD is creative! Oh if I just had a handler to keep me on course! Haha!

        I love your comment about your brain feeding you comebacks! Story of my life! If I had only said “blah blah blah…..”. Those seeking lab rats can follow me for even just a day to see text book ADD in action! No rodents are necessary for sure!

        Speaking of DSPS (giggle), I saw Lisa Ling on Carson Daily After Hours last night. In doing a story, she discovered that she too suffered. She says during her years of going to school, she never quite fit that typical Asian mold of the academic. She turned to journalism as her creative outlet.

        If it’s aloud, here is a link to the story she ran on her CNN show. http://www.cnn.com/2014/10/09/living/lisa-ling-genius-essay/index.html

        And way to go Glen for taking care of yourself instead of feeding someone’s ego and pocketbook!!!

        Pam

        PS-I just re-read my post. Random. Really random. But then again, y’all can relate!

        Like

        • LOL – everyone who reads this blog really understands executive functioning issues. We ALL “ramble,” comment “off topic” etc.

          What’s funny is that the ONLY ones who seem to notice are the people who feel they must apologize for whatever it is that they do.

          Thinking that through, it’s not funny at all. It’s a sad reflection of how very much make-wrong we’ve all internalized. BUMMER.

          YES, btw. I welcome links to related content (and thanks) — and PLEASE feel free to supply a link to anything that you’ve written on the same topic, btw. I’m into educating, not being the only one who does it – so I welcome the help!

          IMPORTANT CAVEAT:
          keep it to one “live” link per comment or you’ll be auto-spammed — I had to strengthen my spam filters because I get SO darned much (I detest spammers!).

          You can always put additional links in “code” – they won’t click with spaces between the “parts”, so the spam software doesn’t bounce them.

          You can also comment multiple times on the same article & I will approve them all. In that case, add a short description of what the links lead to. (Solo links get autospammed most of the time. The software seems to need to see some words besides the link.)

          Re Zoloft: Not only is it the most activating of the SSRIs, and provides a great deal of help with what I call “frustration induced depression,” it seems to work SO well for “shifting focus at will” (see Dynamic of Attending post) that many too many supposed ADD docs think that “those dangerous stims” aren’t necessary.

          General consensus is that Zoloft is the most effective of the SSRI’s for ADDers. It certainly worked for ME when I was taking it. (Paxil’s the worst, btw – even though anxiety sufferers swear by it).

          xx,
          mgh

          Like

          • Pam Augspurger says:

            MGH added some formatting for emphasis – words untouched:

            I was originally prescribed Zoloft to take the edge off. My ob doctor prescribed 50 mg. Then I luckily got on as a patient at the office of my now much revered “regular” doctor via one of his NP. Guess what I originally saw her for ???? Yep. ADD. After my son was officially diagnosed, I thought well damn! That’s what’s been wrong with me all these years! I got in to see her and she gave me my official diagnosis.

            I never figured on seeing the doctor whose practice I was going to but they scheduled an appointment with him telling me he likes to see everyone at least once a year. Well, well, well. Little did I know what would begin to unfold over the next couple of years. I think I became a special project of his in a good way, unlike Glen’s experience.

            Along about February of 2013, I was at an appointment and was going to ask him for a referral to a psychiatrist. I began telling him of my sleep woes. “I sleep great, doc, just not when anyone else does. Everyday I wake up and say this is the day I change. And it never happens. I just need some kind of help to overcome this and the anxiety and frustration it brings.”

            My doctor stays hungry for knowledge. He’s a scholar. Well, seems he worked his way through studying on his own to become board certified in sleep disorders. So naturally as I’m explaining my need for a shrink, his wheels are turning and he begins to grin. I didn’t know he was certified in sleep disorders and I sure as hell wasn’t expecting what he was about to tell me.

            When he told me that I had DSPS, I literally broke down crying. I looked at him and said “so I’m not crazy?” He said “no you’re not crazy. God hard-wired you this way and you can no more change it than someone could change a thyroid condition they may have.”

            Talk about liberating. But it was short-lived because I then just had another “excuse” for my weirdness. (Been like that my whole life. Just ask my siblings!)

            Where am I going with this? It’s leading back to the Zoloft. He took over the management of my Zoloft. (Coincidently, he and my OB went to med school together. She told me he graduated first in their class. Not surprising.) He wanted to investigate some of the sleep-regulating hormones, so he ordered a blood test on me where I couldn’t eat certain things several days leading up to having blood drawn. It was an odd list of food!

            Well, turns out my measly 50 mg of Zoloft wasn’t near enough. My serotonin levels were very low. He upped it to 100 mg then later added the Wellbutrin. And since then, he switched me over to adipex since I was ready to stop wasting money on ADD meds.

            He’s also board certified in bariatrics and has a weight loss clinic that I went to. That’s how I found him. When I initially went to his clinic, the bariatrics staff had me change from Zoloft to Prozac. To coin one of my all-time favorite movie lines. “Big mistake. Huge.” I was depressed and meaner than hell on Prozac! Too bad if Zoloft leads to weight gain! That’s the poison I’ll choose!

            And now we get to toss some HRT in the mix! In retrospect, much of what I’ve been experiencing the last 12-18 months has been exacerbated by that blessed life changing process. It has intensified all my “quirks.” I can’t tell you how many times over the last couple of years I’ve said it seems to get worse the older I get. Supposedly this too shall pass…(but not soon enough!)

            Thank you for listening to/reading my diatribes. I don’t have to tell you what it does for me. I’m just glad I found your haven back when I was seeking DSPS info. I come and go but take comfort great in knowing you are here!

            Thank you!
            Pam

            Like

            • No surprise re: Prozac – it is reported to negatively impact dopamine pathways (exactly the WRONG way to go with ADD!).

              And talk about weight gain!
              I have always been a fairly thin person who gained THIRTY unwanted pounds during an early trial of Prozac (all the while hearing that I must be mistaken, the studies indicated that people lost weight – NOPE, most docs don’t listen!)

              Once I flat out refused to continue to take it (when it totally shut down all sexual response), it took THREE SOLID YEARS of non-stop dieting to reset my metabolism and lose the weight, btw. (and you KNOW how long that is in ADD years)

              FYI: Although 50 mg. of Zoloft is sub-clinical for depression, it’s about standard for comorbid ADD issues — so the prescribing OB was not in error starting there, even though it wasn’t nearly enough for you. However, your new doc sounds AMAZINGly well-informed (and I don’t particularly care for that overused word).

              Do me a favor and hop over to Occupy ADD and list him. I can’t seem to get anybody to DO that!

              I want to collect a list of names of GOOD “ADD docs” to offset my rants about the poor ones in addition to helping people find decent help (even if all it does is give them hope that there ARE well-informed docs out there, along with the tenacity to keep working on finding one of those ADD angels on earth).

              THANKS!
              xx,
              mgh

              Like

  2. Glen Hogard says:

    Thanks, Madelyn, as a recent escapee from a 1 rat study for two years that really upset my life. I can say that when those of us for whom meds don’t work don’t have answers, that makes us vulnerable to “sweet-talking” As 1 psychologist and 2 medical doctors described to me, I was a medical “victim.”

    When I stopped taking massive amounts of supplements i.e. 6,500% MDR B-6 and 500mg of sheep brain “adrenal glandulars” with every meal, and other supplements “purchased” from the same doctor recommending them, I got better. I got “real” better “real” fast.

    It only took a week off this brew for my mood to become stable. After two months, I have my happy-go-lucky slightly off center ADHD self back again. I experience real “Joy!” I don’t fly off the handle simply because I’m sitting on the edge of the fight/freeze/flight ledge where massive doses of sheep brain adrenal coretex and adrenal “glandulars” had put me.

    To make it worse, the doctor who so eagerly sold me these “enhancements” saw my strange behavior “on” them and said quote: “I’m a psychiatrist not a psychologist. You need therapy.”

    Now that I understand he was the cause and not the cure to the “disease” he created with this substance, it makes me very angry. I have an expectations that doctors will be aware of all possible side-effects of what they prescribe – and recognize them when they show up.

    Caveat Emptor: buyer beware. If the doc you are seeing is *selling* an unregulated, untested “cure” and he’s the only one recommending it, you may also be setting yourself up to be a “medical victim.”

    Don’t assume you can trust the doc simply because of visibility. He may be speaking at your next conference. He may sound wonderful. Don’t be as desperate as I was and swallow it hook, line, and sinker. Now I’m afraid and know “others” were looking to me as a successful example and planning on starting the same treatment. Yikes! Now I feel even worse.

    Thanks for your article. This is a side issue, but related.

    Like

    • No real response necessary – you said it all! I’m am so happy to know “the old Glen” is coming back.

      One of the most important functions of ADD Coaches, in my mind, is recognizing when affect is an indication of something that needs to be looked at, giving feedback from that place ONLY, and encouraging their clients to do what it takes to get back in balance.

      It’s almost impossible for me to understand those coaches (and other ADD “pros”) who do “shame and blame” laser coaching — rather than identifying what they see and COACHING it!

      xx,
      mgh

      Like

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