Expectations set by appearance


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DeceptiveAppearances

original source unknown

Getting PAST the Visual?

by Madelyn Griffith-Haynie, CTP, CMC, ACT, MCC, SCAC
A Walking a Mile in Another’s Shoes Post

A recent conversation on a TBI article, Laughter is Brain Injury Medicine – Relieved it’s not me … new what?  launches a conversation that deserves an exploration here — thus, the article below.

(Regular readers have probably noted that Edie, a TBI advocate, frequently comments on the articles I put together to help, primarily, a readership that has attentional struggles and challenges. I comment on her blog as well.)

I hope you will take the time to investigate Brain Injury Self Rehabilitation, the blog sustained by the life experiences and research of former nurse Edie Flickinger.

MUCH of the information that she shares about Traumatic Brain Injury is also relevant to the rest of what I call “the alphabet disorders” population: ADD, EFD, ASD, MDD, BPD, OCD, ODD, etc.

Appearance Expectations

In her article, Edie’s point about appearance expectations (they look good, therefore we expect them to “work good”) is something I had never really thought very deeply about in terms of its impact on the functioning of those whom I have coached and trained — at least, not quite so consciously.

Sometimes Size DOES Matter

BigLittleI have long observed certain manifestations of that particular “expectations set by appearance” dynamic with adults and groups of children.

I have repeatedly noted the greater number of frustrated adults when kids who are much bigger or taller than same-age children struggle with accomplishment (even when a “big” kid performs at a higher level than his or her peers.)

People subconsciously expect a particularly “big” kid to be able to do (or learn, or already know) what they would expect of a child several years older.

If the child performs at an advanced level cognitively or intellectually, it frequently seems to be taken for granted, even discounted (in a manner similar to the way we admonish bigger kids not to physically bully those who are smaller or frailer).

Should the “big” kid be even the slightest bit delayed in development, adult concern can be intense!

“Little” kids (most often if they are female), seem to get a “pass” on functional or behavioral issues more frequently than their “standard-sized” same-age buddies as well — an example of the same dynamic from the other end of the see-saw.

But I’ll bet Edie is absolutely correct that many of our expectations of what a person “should” be able to handle functionally and intellectually are set by appearance standards, regardless of age. After all, we do “dress for success!!”

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Kozzi illustration

Kozzi illustration

Jammie Days

I am also reminded of “Samantha,” a particular ADD client who REALLY wanted to have a baby.  Since no one truly knows the effects of medication on a developing fetus, the prevailing wisdom is to avoid any medication that is not essential to the ongoing health of the mother.

While we could argue over the meaning of words like “essential” and “ongoing health,” during her pregnancy, this particular client whom I will call Sami, chose to go off the medication on which she had been successfully managing her ADD symptoms for quite some time.

She also decided that she would not resume medication until her baby was fully weaned and no longer likely to be nursing.

GULP!

For Sami, that meant forgoing medication to help her manage anxiety as well as intentional focus — for an expected two years or more.

She struggled without her medication, of course but, during the course of her pregnancy — in addition to weekly ADD Coaching — she got a great deal of help and understanding from those around her.

  • After all, since everyone could clearly see the changes in her body, it was easy for them to relate the changes in her behavior to her advancing pregnancy.
  • Her family, eager for the arrival of the first grandchild on either side (along with the proud soon-to-be Papa), all pitched in to help so that she could “get her rest” during this important time.

Her problems really began after the baby was born!

Dealing with chronic sleep-deprivation on top of post-partum exhaustion — along with both a change in (and increase of) to-do items — Sami quickly noted that there were some days when she was simply unable to cope unmedicated.

  • Her family was understanding and helpful for a few weeks, chalking it up to some flavor of “post-partum depression.”
  • After a couple of months they expected her to return to her pre-pregnancy self, and began to comment about how she “should” be coping better and what she “should” be doing again.
  • NO ONE linked her prior functioning to her prior medication OR her current LACK of functioning to her current lack of medication — not even Sami herself.

Sami_juggling-momInability to Predict

To make things even MORE difficult, like most ADDers, Sami’s functioning was erratic.  Some days she juggled better than others, some days she didn’t seem to be able to juggle at all! (Click HERE or below for more about the Juggling analogy)

It got to the point where she admitted that even GOOD days were “bad” for her, because she worried that if she “felt better” she would “pay for it later.”  According to Sami, her family seemed to expect nothing less than continuous upward improvement.

“Some days,” she admitted, with a catch in her throat, “It’s almost wipes me out to get READY for the day – it’s almost more than I can do to take a shower and get dressed!”

“So why get dressed at all?” I asked.  “Why not save that energy for yourself or the baby on days like that, and spend the day in your pajamas and robe?”

“Well,” she replied, “The LEAST I can do is put on some make-up and decent clothes, and do something with my hair, so that I LOOK relatively together!”

Well NO WONDER her family expected her to have it all together – she certainly made sure she looked on top of things!

Kozzi graphic

Kozzi illustration

I made her promise to take her functional temperature every single morning, and to remain in her pajamas on days she was “under the weather” cognitively, just as she would if she were under the weather physically — at least for enough time to see if that little trick made any difference in the expectations of others.

IT DID!  Not only that, it handled Sami’s “fear of having a good day,” once it became clear to all what kind of day she was having simply by LOOKING at her.

Almost as soon as she took the pressure off herself to “look” higher functioning than she felt, she actually functioned better, and her anxiety improved considerably.

Several days in a row of PJ living also prompted the suggestion that hiring somebody to help with the housework and some of the cooking was clearly indicated, at least until the baby was weaned.

Sami’s reaction? “Amazing!  All of this, simply because I now look as lousy” I feel.”

Expectations-mismatches MATTER

In an earlier article, Expectations Mismatches & Moon Men, I made the assertion that frustrated expectations are always difficult to overcome, and went on to explain my theory about the expectations dynamic.

I went on to say that it was important to understand yourself and your cognitive Challenges well enough to be able to predict what others were likely to expect from you overall, compared to what you were likely to be able to deliver on any particular task (or on any particular day).

Artist/educator Phillip Martin

Artist/educator Phillip Martin

Prediction is key

An ability to predict the impact of your particular combination of cognitive challenges allows you to realign expectations realistically, so that you can design action plans that are likely to succeed.

Almost more important, through prediction’s crystal ball you will be able to design action plans that produce the kind of results that are more likely to be perceived by others as successful.

(Click HERE or in Related Links below for more on these concepts)

‘Tis lookin’ BAD for lookin’ too good

Only after reading Edie’s article did I consider the possibility that, in addition to being able to predict our own level of functioning, it might be important to use our observing egos (our “witness” selves) to predict how we appear to others as well.

Perhaps our attempts to appear cool, calm and collected to everyone around us might actually be doing us a bit of a disservice.  It occurs to me now that ONLY when those around us are aware that we are struggling will they be likely to offer assistance rather than condemnation.

Yet, thinking about it, it’s not the first time that thought occurred to me.

  • I usually make sure to mention to my clients that their appointments with their doctors would yield better results if they took a list of current problems with them to each appointment.
  • Not only, I remind them, does a list help them to remember to mention everything their doctors need to know, it also counteracts the all-too-human desire to look like we’re doing better than we are — holding it all together, especially when we feel like we’re close to falling apart.

What do YOU think? 

Would it make any sense to keep our “appearance” more congruent with our “functional temperature” in other arenas as well, or would “looking” like we’re struggling create more problems than it might solve?

Does anybody have the guts to give the idea a test drive?
Has anybody tried it already?

I’d LOVE to hear your results.

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From braininjuryselfrehabilitation.com

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!"

17 Responses to Expectations set by appearance

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      xx,
      mgh

      Like

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  7. Reblogged this on braininjuryselfrehabilitation and commented:
    Since TBI and Chronic Illness are invisible, appearances mean more than we think.

    How we dress, our attitude, and self-esteem make a difference of how people treat you. It seems as though when “appearance” is the only thing you can “control” when everything and in everyway your body worked is unpredictable you resort to doing what you can to feel your best. Read this article on how “appearance can be deceptive” and try to be congruent with feelings.

    There are many articles at addandsomuch.com that are helpful to TBI. Take some time to enjoy the articles and leave comments.

    Like

    • OTHER RESPONSES to Expectations Set by Appearance under the “reblog” of this article on Edie Flickenger’s site: homepage link====> BrainInjurySelfRehabilitation (BISR)
      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

      From brokenbrilliant [his blog: homepage link====> Broken Brain – Brilliant Mind: Using the infinite mind to overcome the limits of the brain… Experience-Based Brain Injury (Concussion, TBI, ABI, Stroke) Survival Strategies and Tactics
      May 10, 2013 at 4:42 pm

      It’s absolutely true about appearances. Probably the most significant investment of my time has been in learning how to present the appearance of having it all together, even when I don’t.

      Granted, it doesn’t help me get the help I need, when things are going poorly with me. But at the same time, so many people judge you at first glance, that if I let on that things are not good, then I get treated not-so-great, which is no help at all.

      Judging by appearances is an unfortunate fact of life, but it’s something we need to learn to deal with the best way we can.

      Just so long as we don’t “buy our cover” 😉
      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

      Edie’s Reply to BB — brain injury self rehabilitation (BISR)
      May 10, 2013 at 8:42 pm

      I gave this a lot of thought, and I’d rather appear Confident and in control because that’s just who I am and I think that’s normal with TBI. We have enough stuff that we can’t control. Who wants to look like Sh*t anyway! I don’t think would help us get treatment or others to understand … the only way that happens is if they’ve been there. [emphasis mine]

      Rarely, will healthcare professionals be hired with brain injury … and that’s a disservice to the TBI community. Why don’t they hire experienced TBI individuals in healthcare for educational purposes? Our damaged brains are better than many who supposedly don’t have damaged brains! Take care and stay safe.
      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

      BB Replies again – brokenbrilliant:
      May 11, 2013 at 7:13 am

      You’re right – looking like sh*t doesn’t help us get treatment or get others to understand. {sigh}

      LOL – it’s true – our brains can be a lot better than “normal” folks’… The thing is — and this is where I think tons of healthcare folks don’t get it — it’s not about your ‘innate’ ability that matters, because that is always, always changing. It’s about how you handle things and adapt and grow and accommodate and evolve. That’s something that all of us can do, no matter what the state of our brains, and it’s something that “normal” people can learn a lot about — from us.

      I’d like to say it’s their loss, but it’s really everyone’s. [emphasis mine!]

      Oh, well. Have a great day anyway.

      Like

      • My comment on Edie’s site: [emphasis for readership here]
        June 9, 2013 at 3:44 pm

        I just found this reblog, Edie — (thanks, btw) — so I am only now reading the comments. (odd, what WordPress tells me about and what it doesn’t — maybe it’s just trying to “appear” functional 😀 )

        Good points above, both of you.

        The biggest misconception about “damaged” brains is that, with only a few exceptions, “broken brains” aren’t like broken crockery (where the only alternative is superglue!)

        The brain is a dynamic organ that remaps. You may lose a particular function for a while – and it may *never* work the way it used to, but more than a few of the “work-arounds” turn out to be more valuable than disabling, ultimately. It shakes up “set in stone” procedures and perceptions, which creates new and original ways of looking at life and mind.

        There is no analogy that works very well, but it’s more like road construction than almost anything else I can come up with right now. When one road is closed for construction, maybe it will take a day – maybe a year or longer – before you can use that route again. Maybe they’ll close the road forever.

        Meanwhile, you find a new route. Maybe it’s even faster, maybe it is slower but more scenic, but eventually we put the new route on “autopilot” and life goes on.

        Our problems come when our bosses (assuming that where we’re trying to go in the analogy above is work) insist that we use the old route anyway, or can’t see the value in the new one — or assume we can’t get to work anymore, so they have to replace us.

        THEN, if “the highway commission” reopens the old route again, or closes down our new one, we have to “travel” consciously once more – which takes cognitive bandwidth that can’t be used for anything else until our NEW route becomes automatic.

        And so it goes. But, and this is overlooked time and time again, that is the human condition. EVEN with the NT crowd, there are always things that “close roads” and force redirections, and that always takes a bit of additional time to assimilate. New technology, new bosses or teammates, downsizing, illness — all force *everyone* to find a new route.

        They could learn a lot from how we do it!

        Like

        • ONE LAST POINT:

          I hope it didn’t seem like I was suggesting that everybody needs to walk around in PJs with unwashed hair. 😀

          Remember, that client was a stay-at-home new Mom, and the PJs were for her family.

          OF COURSE we do our best to look our best – for our own self-esteem if for no other reason!

          What I was hoping to get everybody thinking about was the extent to which we judge by appearance – and to look at our own “appearances” to attempt to determine what others may be assuming we can do that maybe isn’t exactly what’s so — a nudge to us to communicate our needs better.

          If we LOOK like we have it all together, we really can’t blame others for expecting from us what “everybody else” does. Not to say we are defective – but we ARE different, and others may not understand that without a little help from us.

          xx,
          mgh

          Like

  8. I wish I could write like you! Writing for me is a challenge … some days more difficult than others. This is another great article. I haven’t ever read one article I didn’t like. I’ve thought a lot of how “appearances” and “expectations” are intertwined.

    You’ve given an excellent example of the pregnant woman. That’s such a visual and it’s sad but others should help make the connection between “laziness” and “withholding medications”. Withholding medications can be dangerous in many ways. First, if it’s helpful it’s most likely the chemical your body needs.

    Our bodies are all made of chemicals … some more … some less, and we are all unique so that chemical balance needs to be adjusted specifically for that individual and not just the same dosage “one size fits all” type. If patients don’t feel better, they need to report it so the medications can be adjusted or changed. Everything doesn’t work for everyone, but that frequently is also another expectation of healthcare!

    I have found that we may have been “hard wired” to always “look our best” since early childhood and “never complain”. That’s been forever, and it doesn’t seem easy to change, when one hasn’t learned how to complain!

    It’s my experience with TBI that “appearance” has been the only thing controllable, hence it’s the one thing “changeable”. I can see how that would incongruent with the “daily struggles with TBI”, but any chronic condition others in their lives seems to fade away, and still many remain uneducated to help those in need. So, it leaves many to change what they can … and that would be to control appearances, besides it helps immensely with self-esteem.

    In recent months I’ve found that packing and moving has taken a physical and emotional toll and by 2:00 pm I’m exhausted. But, it’s a good exhaustion, because I can finally do things since I’ve finally been treated. Anyway, I’m now able to bathe after fulfilling these tasks and put on pajamas for the remainder of the day. I’m finding by doing this others don’t expect as much out of me … just as you have mentioned in your article. I’ve never done this in the past, but I simply resort to this to conserve energy, but it works on many levels.

    First, I’ve accomplished many things in a days time. Second, I need to relax and not be available to everyone around me all the time. That’s where people take advantage of one. Finally, I can finally tell those nearest to me that “I’m done for the day!” and I don’t care what others think. It will save me in the end.

    Now, I wonder are you taking care of yourself? It’s hard, if not nearly impossible to unlearn old habits … but I’m learning. Better late, than never!

    I read the comment from Dr. Crass and it reminded me of a comment my excellent psychiatrist (dx. organic brain syndrome secondary to TBI) made when I said “I can accomplish only one thing a day” and her reply was “I doubt that.” I only wish she took me seriously, because my symptoms were so obvious that I could have started proper hormone therapy many years earlier. Now, that is where “appearances” were harmful, and that could have easily “killed” one without proper treatment. Only God knows why I’m still here! That’s just one cited example.

    Unfortunately, millions of people have incongruence in communication and feelings and appearances. Some of us minimize everything, and seem to have it “all together” because of genetics? environmental? upbringing? handle stress better than others? We are all different.

    Shouldn’t healthcare professionals be able to identify people who minimize versus people who exaggerate? It seems like we all fall into the “exaggerate” category, just because it’s easy to ignore.

    In my case, I know my sister and brother and very close friends know I never exaggerate and always minimize … but who in healthcare would know that in case of emergencies? Could this be part of reason for so many misdiagnosis and mismanagement of healthcare issues?

    Again, thanks for the excellent article. I hope more of my readers visit your site.

    Take care and stay safe, Edie

    Like

    • WELL, Edie, for a woman who struggles with writing, you have added an excellent Part Two to my article. Thank YOU!

      I know what you mean about “minimizing” – in my case, I am *extremely* literal, yet so many hear me as hyperbolizing that they miss the meat of what I am saying. IMHO, helping professionals in ALL fields need additional training in (and reframing OF) two of the core skills in the coaching field: listening and languaging.

      Re: getting others to visit and read the info posted here or on your amazing resource — it is a HEARTBREAK to me that functional impairments domino into a lack of TIME to visit and read.

      So many people are, metaphorically, “dying of thirst on the banks of the stream” because they just can’t see making it ONE more step!

      I don’t have any answers, obviously, but I continue to ask the question: What can we do to get them to DRINK?!

      Thanks for ringing in here.
      xx,
      mgh

      PS. Our thinking is SO close in alignment, Edie: I have started a draft tentatively titled The Importance of Modeling, and one of the points is that SO many of us never had an effective model for requests OR complains, so many of us never learn how to do it in our adult lives — sometimes with disastrous results.

      NOWHERE are those skills more important than in the offices of our care providers!!

      Like

  9. David P Crass, MD says:

    Looking good, despite how the person feels, can be deadly. When I had an active psychiatric practice, 2 of the folks I treated for ADHD were articulate, easy to talk to, males. Each was VERY good at making a good presentation; better than I was at asking powerful questions (This was years before I heard about ADHD coaching.) Each seemed to be doing quite well, except that each ended their life with a bullet to the head. I am now more aware of the need to see behind the curtain.

    My vet tells me that in the wild, animals have to look well even if they are wounded or sick lest they quickly become lunch. So I think this tendency may well be hard wired into us; which makes it even more important to bring up to clients.
    Excellent article!

    Like

    • Thank you SO much for this comment – and for your bravery in telling the story of the two patients who managed to hide how MUCH they were struggling, right up to the bitter end — it makes the point that it’s important to be brutally HONEST with your care-givers better than I ever could.

      It is especially important with meds appointments, which are so short it would be unreasonable to expect ANY doctor to have time to play 20 questions.

      Ironically, the comment I hear back most often is that ADDers are afraid to be honest with their psychopharms, lest they be taken off the meds that make it possible for them to function at ALL.

      I wish I could tell them that their fears are unfounded, but the internet is full of sad tales where a dx of “mood disorder” followed an admission of erratic functioning, and they WERE taken off their stims because their doc was fearful of “kindling a manic episode.”

      I know that a bipolar/ADD differential is tricky, but I truly believe we need some serious ADD education initiatives in the medical field – it astounds me how few docs are aware of the reality that mood swings are relatively common with ADD – even among cases like mine, where a life-long sleep disorder is my ONLY comorbid (predating my ADD dx by 30 years, thank the lord, or I probably would wouldn’t have been able to stay medicated ALL day because the meds would have been blamed.) Fortunately, my current psychopharm is GREAT!

      I’m also grateful that there are people like YOU out there. Can we clone you?

      xx,
      mgh

      IMPORTANT: SEE COMMENT BELOW

      Like

    • IMPORTANT ADDENDUM: Lest I leave everyone else disheartened by the information I wanted to share with Dr. Crass in my first response to his comment, there ARE ways around that fear so that you CAN be honest with your doctor. You will never do as well if you you don’t let your care providers know what’s really going on — you really *must* share the truth if you expect anyone to help you adequately.

      Briefly, it comes down to remembering to do THREE things: write it down in bullet points, watch your language as you tell your truth, and begin with the fear. Two points below expand A BIT on what that means.

      1-Focus on how your erratic functioning makes you feel (sort of an “impulsivity of emotion”) not on your feelings themselves – cause and effect – NOT as if they came out of nowhere. (and use “feelings” not “moods”)

      2-Start with the fear and reference your ADD Coach (and/or this article – wherever you got your information)

      i.e., “An article by an ADD Coach says its really important for our docs to know how we’re doing functionally, but I’ve also read that some people have been taken off their medication when they do, so I want you to know I’m a little fearful to let you know when things are erratic. I don’t want you to misinterpret what I’m saying. Anyway, I wrote down some of the problems I’m having, to help me stay focused . . . ”

      REMEMBER that you and your doctor(s) are on the same team, and no matter how knowledgeable your doctors, YOU are the expert on you.

      xx,
      mgh

      Like

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