An Open Letter to Sleep Sites EVERYWHERE


Asking for a Legitimate Place at the Table

© By Madelyn Griffith-Haynie, CTP, CMC, A.C.T., MCC, SCAC
In support of the Sleep Series

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As requested, in support of the relatively new Circadean Sleep Disorders non-profit, the following letter was sent directly to kjones@sleepfoundation.org — but it COULD have been sent to almost every “official” sleep site on the internet.

So posting it here on ADDandSoMuchMore.com is my answer to the dilemma of how to do exactly THAT.

I have edited and formatted (adding some headings and graphics) to make it easier for ADDers to read on a blog, and making it more relevant for sending to ANY sleep site.

If *you*(or anyone you love) struggles with falling asleep and waking up “at a decent hour,” the information included below could possibly change your experience of living.

I hope someday to be able to say that it is widely available.

Please feel free to reblog (or resend), or to take the time to cannibalize or edit, using primarily your own words — but please DO pass it on.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
“It takes a village to educate a world.”
~ mgh
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Subject: Please Add DSPD to [your] Website[s]

Please help.

Delayed Sleep Phase Disorder (DSPD) still does not appear in the dropdown list of disorders on your home page, nor anywhere on your Disorders pages (www.sleepfoundation.org/articles/sleep-disorders). I appreciate that you’ve added Non-24, but there is still nothing on DSPD.

I’m sure you’ve seen these words before, and I can well imagine that you’re overworked.
However, since there is so LITTLE information about chronorhythm disorders on the web, I would really appreciate your moving the items below UP on your list of To-Dos.

A great MANY individuals are struggling, self-esteem decimated because they can’t figure out why they can’t do what “everyone else” seems to find so simple: go to sleep at a decent hour and wake up with the larks.

MANY need help they can’t find

While there are bloggers (like myself) who post information about chronorhythm destabilization disorders (with links to your site on many of the articles in my Sleep Series), most people begin the search for information with sites that are positioned as authorities. They click away disheartened when it seems that even the “experts” can offer them no help.

When it seems to them that you have not included DSPS (DSPD) because it is not on the dropdown menu, they also question the validity of the information available elsewhere.

And they are left, once more, wondering what’s wrong with their motivation,
rather than what’s going on with their SCN that they simply cannot entrain.

The community I support – those who also struggle with attentional disorders across many spectrums, REALLY need the information to be easily found – and up to 75% of them experience problems falling asleep and coming to alertness at “normal” hours.

They are a community of nite-owls.

DarkGlassesNOT just a problem for the blind

I also promise you that N-24 is not NEARLY as rare in the sighted community as most of the information we can find seems to believe.  It would appear so, because the FEW studies undertaken have excluded the sighted from participation.

I would like to request that you edit your Facts & Prevalence page to give sufferers who can SEE some hope that they are not alone, and that they are not the source of what is a significant impediment to success in life —

perhaps replacing any seemingly factual information that N-24 is “RARE” among the sighted with a clear statement that, truthfully, it has not been STUDIED in the sighted, so there are no figures to site about how many sighted individuals struggle as well.

Awareness is Step ONE

The first step to an accurate diagnosis is an awareness in the minds of those who suffer from ANY sleep disorder that they are entitled to a diagnosis at all.  You could make a HUGE difference in that respect, literally changing the lives of many individuals who have been overlooked for far too long.

I add my voice to that of the Circadian Sleep Disorders Network to request that you re-language any statements that appear to suggest that those who are struggling simply aren’t trying hard enough – words like “inappropriate exposure” to light, while certainly accurate, carry a subtext that is damaging without further illumination.

NOT so!

I can tell you from almost 60 years of personal experience attempting to fashion a life worth living despite DSPS/N-24 (and from 20 years supporting ADD clients with sleep struggles) how valiantly we have attempted to stabilize, and how demoralizing it is to come across information that seems to imply otherwise.

Here’s the Problem

When you are unable to fall asleep until midnight or after, it doesn’t MATTER how early you put yourself to bed.

The advice to insomniacs is to get out of bed and DO something rather than to toss and turn, and yet those of us with DSPS/DSPD (and N-24) are met with censure for our apparent refusal to go to bed early and stay there!

Destabilization in an eyeblink

I could give you many examples of how easy it is for a single change in sleep timing to reduce even weeks of rigorous entrainment efforts to rubble — even

  • daylight savings time
  • a change in sleep timing due to illness, or
  • an unavoidable late night or early morning due to work demands like conference attendance

resulting in the accumulation of sleep debt that decimates efforts to remain regulated.

As Elvis sang, “Don’t be Cruel”

Unintentional as I’m sure it is, it is cruel, actually, for content on any sleep resource site to imply that we are the source of our own problems when we choose to attend an event or a family celebration that throws our circadian rhythms into a tailspin, even though the sleep-normal do it regularly with no ill effects.

I have had clients come to me in tears over their belief that they are doing something “wrong” or convinced that they had psychological conflicts that caused them to “self-sabotage” because their efforts were ineffective.

Unless they have spent years “in the trenches,” as they say, sleep science truly has no idea how many individuals have spent money trying various light treatments or brands of melatonin to no avail.

  • The currently suggested therapies do NOT work at least as often as they do.
  • In addition, there is very little in the literature to indicate that many with DSPS/DSPD who attempt chronotherapy end up with the devastation of N-24.

We NEED and deserve to be included with compassion, our struggles taken seriously, and supported.

I applaud your efforts on behalf of a range of various sleep disorders, and am eager to see the MANY individuals who struggle with DSPS/DSPD and the sighted with N-24 be supported as well.

Sincerely,

Madelyn Griffith-Haynie, CTP, A.C.T., CMC, MCC, SCAC
(Certified Coaching Pioneer – Founder: ADD Coach Training Field)
Brain-based coaching & training for the CRAZY/Busy
Blogsite: ADDandSoMuchMore.com
ADDerWorld: My blog on ADDerWorld
Ethos NZ: My blog at EthosConsultancyNZ


As always, if you want notification of new articles – in the Sleep Series, or any new posts on this blog – give your name and email to the nice form on the top of the skinny column to the right. (You only have to do this once, so if you’ve already asked for notification about a prior series, you’re covered for this one too) STRICT No Spam Policy

HOWEVER you do it, stay tuned — there’s A LOT to know, and a lot more to come. Get it here, while its still free for the taking!

If you’d like some one-on-one (couples or group) coaching help with anything that came up while you were reading this article (either for your own life, that of a loved one, or as coaching skills development), click HERE for Brain-based Coaching with mgh, with a contact form at its end, or click the E-me link on the menubar at the top of every page. I’ll get back to you ASAP (accent on the “P”ossible!)


Related articles right here on ADDandSoMuchMore.com

Articles in the Sleep Series
(links turn red & “click” only once the article has been published)

Comprehensive Sleep Sites with decent Chrono-info

Other “comprehensive” Sleep Sites

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!"

6 Responses to An Open Letter to Sleep Sites EVERYWHERE

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  5. A correction, if I may. It is not DSPD which is assumed to occur (nearly) only among the blind. DSPD people do adjust to the 24-hour period, just starting at the wrong time, as if we lived in another time zone.

    It is Non-24 which some “experts” claim is a problem only for blind people. Sighted Non-24 people are forced to live on a (for example) 25- or 26-hour schedule. This means they go to sleep/wake up an hour or two later every day, and no two days are alike. They rotate around the clock back to the starting point in a matter of some weeks.

    Since it’s mainly light that keeps (normal) people adjusted to 24 hours, it’s not unreasonable that many blind people have Non-24, perhaps as many as half of totally blind people. These people actually usually have the normal circadian rhythm of about 24.2 hour; it just doesn’t get adjusted by light every day.

    Non-24 among sighted people is rare and usually is debilitating. Its cause(s) is/are unknown. These people have problems enough without “experts” claiming that they don’t exist!

    Thank you for supporting Circadian Sleep Disorders Network!

    Like

    • Thanks – duh! Too many late nights and “early” awakenings (sleep debt anyone?) I REALLY appreciate the catch!

      I have now edited the letter itself for the blog post — to adjust to your corrections re: N24 vs DSPS/DSPD.

      RE: “debilitatingdon’t I know it! I’m “off” by more than an hour – almost 2, near as I can tell, but it’s tough since I’m free-running much of the time, sleep deprived when I can manage to stabilize wake up time, and *regularly* must pull an all-nighter to rephase following conference attendance & other times where somebody else deems it important for me to awaken before noon. They really don’t GET what it takes for me to DO that!

      Unfortunately, even for ADD conferences, where *most* of us are Owls, the more linear organizers start at “the crack of dawn.” When I speak, they are gracious enough to give me an afternoon time, but showing up in the afternoon ONLY has it’s downside beyond missing all the morning presentations.

      Since I can enroll a waker in that setting, I DO. (A dedicated WAKER is important since I don’t wake to sound and even my bed shaker doesn’t ALWAYS awaken me when I set it)

      DSPS/N-24 has limited my own life in ways it would take an entire BLOG to detail. [link ===>]”Living with JetLag” only begins to explain a few of the many problems.

      I stand by my assertion that it is not as RARE in the sighted as reported, however – BECAUSE it has not been studied in the sighted.

      I send letters saying, effectively, “Please add me to your study – please study the sighted” etc. to no avail. I don’t even hear BACK (most recent to Vanda for their Tasimelteon trial.)

      The various times I have had the time to be active on the NiteOwl list – where nobody identified themselves as blind, in any case – there was so MUCH “N-24-like” chat I couldn’t remain on the list because I was drowning in email — couldn’t keep up with all the comments.

      Thanks for supporting me here on ADDandSoMuchMore.com

      xx,
      mgh

      Like

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