Stages of Grief following Diagnosis


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Exploring the Stages of Grief following Diagnosis

(c) Madelyn Griffith-Haynie, CTP, CMC, ACT, MCC, SCAC
Part of the Grief & Diagnosis Series – all rights reserved

It’s A Process

In the previous article, I introduced some of the predictable stages of grief that we cycle through on the way to a Positive Acceptance of a diagnosis.

I use the term “Positive Acceptance” to refer to the developmental stage where we are able to incorporate a vision of the future that can include our diagnosis without allowing it to define our vision for ourselves and our lives.

We have reached the stage of Positive Acceptance when we are able to embrace our potential for incorporating change as development, affirming that healing and growth can, has and will occur in expected and unexpected ways — and that new opportunities will arise for which we have been uniquely prepared by the process of getting to this stage.

Given the tendency in our community to hyperfocus on rumination, when we are presented with a strong stimulus that triggers the release of adrenalin we tend to agonize!  As I said in the introductory article,  “it is only when we become ‘stuck’ in one of the phases of post-diagnosis grief that most of us take the time to stop to wonder what is going on with us and why we can’t ‘just get on with it.’”

What IS Going On?

One of the “problems” with adrenaline release is that it activates our fight-flight-freeze response, with its attendant shut-down of the prefrontal cortex [PFC] centers essential for what are termed the Executive Function.

Many of us with “alphabet disorders” [ADD, EFD, TBI, ASD] seem to have what I call “hair-trigger startle responses.” As a consequence, we often seem to get stuck far more often than our non-ADD peers.

It is my experience that everyone gets stuck when PFC shutdown occurs, it just happens more often and more dramatically to those of us with deficits in the realms of the attentional spectrum.

That’s the good news as well as the bad news, by the way, but let’s explore some brain-basics before we expand on that idea — and before we explore each of the stages of post-diagnostic grief at the end of this article.  (Stay with me here – it will help things make more sense)

Limbic LessonsBrain_limbicsystemWiki200x263

As far as science knows today, the genesis of our emotional reactions is a primitive part of the brain referred to as the limbic system.

It lies below the cerebral cortex, the most recently developed, cognitive processing part of the brain — that wrinkly outer covering that neurology newbies tend to think of AS the brain.

The current thinking is that the most important limbic area, insofar as generating our emotional reactions, is the amygdala.

Courtesy of Washington irving [sic] on Wiki, who adds, "The figure shows the underside (ventral view) of a semi-transparent human brain, with the front of the brain at the top. The red blobs show the approximate location of the en:amygdala in the en:temporal lobes of the human brain. Note: the amygdala is covered by the ventral temporal cortex (i.e., it is inside the transparent brain ~ Wiki's Washington irving [sic] )."

Underside (ventral view) of a semi-transparent human brain – front of brain at top. Red blobs show approx. location of amygdalae in the temporal lobes. NOTE:  covered by the ventral temporal cortex (i.e., inside the transparent brain) ~Wiki’s Washington irving” [sic]

Just a Bit about the Amygdala

The amygdala is spoken of as if it were a single “thing,” but actually consists of two, almond shaped organs which, jointly, provoke and mediate our fear, anger and anxiety responses.

Since the limbic system has direct connections to our sensory equipment, our extremely rapid, unconscious (seemingly “instinctual”) reactions to events and thoughts have become conceptualized as “gut reactions.”

Why?  Because physical sensations generated by a similar chemical chain of events to the one that “generates” our emotions are quickly felt in the region of the solar plexus, and often stimulate changes in the functioning of our stomach and intestinal tracts.

The Relationship between the Amygdala and the PFC

In 2008, in a wonderful, and wonderfully written, article entitled  The Amygdala & Emotions (which I highly recommend to everyone reading)  the author of The Intuitive Algorithm, Ebbi Thomas, relates the following:

“These [the two almond-shaped organs known together as the ‘amygdalae’] detect and respond to subliminal signals of danger, or of obstructions to one’s goals. In coordination with the insulae, they also respond with alacrity to negative emotions like grief [. . .].

The amygdalae react to negative events in many ways, including activation of your sympathetic nervous system. The results cause you gut wrenching turmoil.

While it takes around 300 milliseconds for you to become aware of a disturbing event, the amygdalae react to it within 20 milliseconds!

Sadly, the knee-jerk responses of these organs cause you to overreact to the world around you. Their momentary mischief in the morning can subconsciously trouble you the whole day.

An awareness of the mechanism can enable you to effectively still their ill effects and recover your peace of mind.

In other words, identifying the stages of processing emotions so that we can place ourselves clearly into one of them can make us feel better immediately.  We will have regained our sense of control.  Once we are back in control, we are able to process the emotions with greater velocity.

There’s GOLD in these here hills

I want to encourage each of you to explore the stages of grief and identify where you are in the process.  If you are like many of my clients and students, you will probably discover where some of the difficulties or challenges you are experiencing are partially a result of being stuck in grief

What I mean by stuck is that, instead of passing on to Positive Acceptance with the readiness and ability to move forward, you keep cycling back through various stages of the grieving process, picking at the same layer of the same onion repeatedly.

The goal of the Diagnosis and Grief Series is to raise your “grief awareness” so that you are able to identify grief when it appears, accept that your response is a normal, predictable and essential part of  life.  It is actually a GIFT, once you learn some techniques that tend to allow those who use them to move on as quickly as possible — much stronger, more focused, and more in control as a result of your efforts.

Use your intellect to get OUT of your head

Grief isn’t logical, it’s emotional. Stop “voting” and simply take the ride.

  • “Pushing it down” won’t work
  • De-value-ing its impact is foolish
  • Barring that metaphorical closet door to imprison some imagined boogeyman is giving grief more power over your future than it would ever have if you would simply listen to what it is trying to tell you.

The thoughts and questions that come up for all of us following diagnosis become part of the journey we must undertake to get to the place where our equilibrium is restored.

Whether we experience it as “grief” or whether we prefer to think of it more as an “adjustment,” and no matter the level of resiliency with which we process, we are grieving.

AS I SAID in The Interplay between Diagnosis and Grief, we are grieving for our past and for our future as we’ve imagined it.  We cycle through stages similar enough to those articulated by Elisabeth Kübler-Ross in her work with terminally ill children, published in 1969 in her book On Death and Dying, that it makes sense to piggy-back on her terms for them.

To Review before moving on to explore each of the stages individually:

Positive Acceptance reframes the impact of our diagnoses significantly.

As we work our way toward Positive Acceptance, where we are finally ready to move on with our lives, most of us cycle through the following stages at least once, however briefly:

Shock, AngerDenialBargaining,
Depression 
(mood vs disorder),
Resignation, and Preliminary Acceptance

Exploring the Stages

Let’s explore the process of working toward Positive Acceptance by exploring each of the stages of grief through the lens of diagnosis.

EmoSmiley_blue_consternated

dreamstime.com

SHOCK  —  This stage refers to the “reality-disorientation” reaction immediately following diagnosis, which will be a product of an individual’s “usual” response to Amygdala activation: fight, flight or freeze.

With each of the stages, your response may be subtle or overt, and may not look like what you are expecting.

In the case of “diagnosis shock,” it may feel more like temporary lack of grounding, or it could even show up as elation (i.e., “I have not yet begun to fight!)

I recently came across one of the best examples of this phase I have ever seen, out of the mouth of an eight year old boy faced with the reality of the diagnosis of a sibling, described by his mother.

From him, it was languaged quietly and simply, recognizing aloud that, “Our whole life is going to change, isn’t it?” (click on: Once Upon a Time and Four Years Ago

ANGER — It’s easy to recognize rage, of course, but anger manifests in a great many other ways, with heightened feelings of the “noisier,” more pronounced, negative emotions.

angerPeople can be angry with themselves, with the universe,
or with people in their particular world — especially those
who are close to them.

Anger may be expressed strongly or subtly — through a hair-trigger temper or a generalized irritation with the actions of everyone around them.

A pervasive lack of patience with self or others can also be a manifestation of the anger phase.

Listen for internal thoughts similar to these:

  • “Why me?”
  • “It’s not fair!”
  • “How can this happen to me NOW?”
  • “SOMEBODY should have known sooner!”
  • “Big Pharma wants everybody on lifetime medication!”
  • “Those doctors pathologize everything” (or aren’t taking my symptoms seriously) etc.

When the diagnosis is not personal – meaning that of a child, spouse, parent or other loved one – each of the following phases are often tinged with anger as well.

denial_clipartodayCOM

clipartoday.com

DENIAL — Denial is a defense mechanism, a conscious or unconscious refusal to accept facts, information, or the reality of the situation that you simply aren’t ready to face.

It is not unusual for denial to have a “stubborn” or intractable quality to it,
as if the internal dialogue were something on the order of,
“And YOU can’t make me change my mind!”

It is usually a temporary defense, but some individuals remain stuck in this phase for an inordinately long time – especially when the diagnosis is not their own.

Don’t automatically collapse denial with a strong stand for “survival despite the odds,” however, or a gut level feeling that something is wrong, but not what everyone else is telling you it is.

Listen for internal thoughts similar to these:

  • “I’m fine, stop trying to convince me I’m not.”
  • I’m the exception – this can’t be what’s going on with me — I’ve been misdiagnosed.”
  • “Everything will be perfectly alright because I have the “right” [medication, doctor, diet, exercise regiment], etc.”
  • “If I can get by without medication or help, that means nothing’s any different than it always was.”
  • “What do THEY know?”

When the diagnosis is not personal – meaning that of a child, spouse, parent or other loved one – the denial phase is usually tinged with anger, along with an unwillingness to accept explanations that might lead to a change of opinion.

Listen for internal thoughts (or external comments) similar to these:

  • “S/he just needs to try harder.”
  • “Everyone is coddling him and he is taking advantage of it.”
  • “This is just giving her another excuse – her sister/brother/”everybody” else can do it, she should be able to do it to.”
  • “S/he is being ‘enabled’ by everyone else and I’m not joining the pity-party.”

BARGAINING — The bargaining stage involves the hope that the individual can somehow change reality in exchange for some sort of action on his or her part.

BargainingBfcaseListen for internal thoughts similar to these:

  • “If I do [whatever] I will be able to avoid medication” (or any particular procedure or treatment approach)
  • “I can handle it all if I’m rigorous about coaching” (or meditation, affirmations, prayer, meds, to-do lists, etc.)
  • “Everything will be perfectly fine as long as I “do it right” (take my medication consistently, follow my doctor’s advice, avoid stressful situations, track consistently, etc.)
sad03_small

aperfectworld.org

DEPRESSION — It’s part of the process of coming to grips with change and loss to feel sadness, regret, fear, and uncertainty when cycling in and out of this stage.

An individual in this stage may become unusually quiet, private or emotionally disconnected, with heightened feelings of sadness and the “quieter” negative emotions.

Periodic visits to the depression phase serve as a “dress rehearsal” for acceptance, with emotional attachment to “what was,” pointing you to tender spots that still remain to be processed (or areas where additional energy might be worth expending).

Listen for internal thoughts similar to these:

  • “It’s hopeless, why bother trying?”
  • “My dreams are essentially ruined, so what’s the point?”
  • “My life will never be worth living if this is how things are going to be.”
  • “I can’t imagine ever being truly happy again.”
  • “I can’t even make myself care anymore.”
Woman in the Early Morning

dreamstimefree.com

RESIGNATION —  In this stage, which is a form of acceptance — albeit not a very empowering or energetic one — you submit your “letter of resignation” to the universe.  You are “giving up the fight,” admitting “defeat,” surrendering (but not very gracefully).

This stage is tinged with submissive acquiescence, while you wrestle with talking some “sense” into yourSelf, trying to focus on the silver lining you desperately want to believe is there somewhere (but secretly believe, maybe not for YOU).

To an onlooker, this stage may look similar to daydreaming, presenting with a type of sadness you can’t quite label.

Listen for internal thoughts similar to these:

  • (sigh – shrug) “Whatever!”
  • “I can’t fight it, I may as well prepare for it.”
  • “I simply have to accept that the things I cannot do will limit my life now.”
  • “I’m sure there must be something I can still do that will be of value to somebody, if I could figure out what it is.
  • “I should be grateful it’s not worse” (or “Other people have it a lot worse.”)
  • “I’m glad nobody’s around so my cheeks get a break from my fake smile.”
sly_small

aperfectworld.org

PRELIMINARY Acceptance You’re getting closer!

Glimmers of hope for a future that will be worth stepping into wink in and out of your awareness. Your smile may not be entirely genuine all the time, but the impulse to smile has returned.

You may notice that this phase can feel a lot like bargaining – as long as you can “somehow stay positive,” you tell yourself, you will be able to live with whatever is going on with you.

Listen for internal thoughts similar to these:

  • “I’m not sure how, but I think I’m going to be okay.”
  • “Maybe I can use my experience to help others.” (note the “maybe”)
  • “I wouldn’t have chosen to orient my life around [whatever], but I can still do (or be) . . .

Those of you who choose service to others to guide your steps on the healing pathway, may notice there is a “proselytizing” flavor to conversations with those behind you in the process – an attachment to their taking your advice.
(Watch for this:
 when they don’t “listen,” you spend a bit more time cycling back through another round of anger or depression.)

drawing_smallmanhappyrunning

openclipart.org

POSITIVE ACCEPTANCE!

You’ve tossed off most of the “baggage” and are finally ready to move on with your life.

You are able to incorporate a vision of the future that can include your diagnosis without identifying with it, embracing your potential for change and growth in expected and unexpected ways.

Watch for signs like these:

  • Your sense of humor is easily accessible (your “default” now, even with challenges that once threatened to engulf you).
  • Enthusiasm returns.
  • You can easily see the gifts in your experience.
  • You are gentle in your communications with those behind you in the process.
  • You don’t continue to tolerate situations that don’t work for you, simply because others feel you should be able to handle them.  If they aren’t willing to consider working with your needs, you’re outa’ there (sans anger or rumination).

NOTE from mgh: I spent a great deal of time putting this basic information together as concisely as I could manage without dropping out foundational elements — since we all know that there are individuals who find the holiday season a bit depressing (who could use a new perspective to help them make it through). HOWEVER, there’s more to it than you might think from this article alone.

I would have preferred to split this into two different posts, but I wanted to give everyone reading access to this information without posting additional articles in the Grief Series as the Holiday season draws nearer — with sensitivity to those of you who prefer to focus on more festive thoughts. I’ll resume this topic after the New Year.

PLEASE help me let people know of its existence by sharing a link with those who could be helped by looking through a different lens to understand why they are struggling – and a paradigm they can actually do something ABOUT!  — THANKS!

As always, if you want notification of new articles – in a the Grief 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

If you’d like some one-on-one (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 the E-me link  <—here (or on the menubar at the top of every page) and I’ll get back to you ASAP (accent on the “P”ossible!)

Articles in the Grief Series:
(links click ONLY once the article has been published)

Other Related Content here on ADDandSoMuchMore.com
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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!"

5 Responses to Stages of Grief following Diagnosis

  1. Pingback: The Unique Loneliness of the Military Family | ADD . . . and-so-much-more

  2. SnapInTime says:

    I very much appreciated this. This topic applies to our family for several reasons and I very much like how you covered it here. I look forward to exploring more of your site …one of my sons has severe ADHD.

    Like

    • My pleasure! (and admiration for trolling for info to help your son!) I appreciate the “likes” AND ESPECIALLY that you took the time to comment.

      My BEST advice [albeit unasked for – sorry can’t help it :|] Remind yourself (and him) that everybody’s got something – and that there are gifts and challenges in every single one of those somethings (very normalizing) — then name a few of the gifts you see in your son.

      One of my best [non-ADD] girlfriends shared this from her son’s reaction following an appt. with his doctor (he was a kid at the time):
      he came bounding out of an appt. BEAMING, eager to recount what the doc had just said. “Guess what, Mom, HE has ADD too, and he said that if he could push a button and get rid of it he wouldn’t. He thinks it gives him an advantage.”

      THAT comment changed this kid’s life! Turns out he was feeling quite “broken” (common, usually not shared), and some of his difficult behavior was some kind of defensive reaction. Once he felt “special,” things started to change in the family dynamic – some of that stuff just stopped. (For what it’s worth . . .)

      Sorry to hear that there are “several” reasons you were attracted to the grief post. I hope this helps.

      The reason for this topic in the first place was the recent death of my Dad and two close friends — all within a single month.

      In upcoming articles I explain what grieving ANYTHING new does to “dx Grief” (I was newly reminded) – so if your family is experiencing anything in the ‘nabe, don’t be surprised if your son’s ADD gets “worse” for a bit. It won’t last forever.

      Thanks again for stopping by.
      xx,
      mgh

      Like

      • SnapInTime says:

        Thank you so much. My family is medically complex and I’ve come to realize over the years that the grieving process never seems to be done…. With every new complication it seems to set me back or change where I am in the process and my son definitely reacts to it and has feelings of his own to get through when it comes to his siblings’ health. In his case he has the ADHD but is also gradually having to accept that he has another condition to go along with it, and that is hard for him.

        I do try very hard to bring out to my son the things that make him special, his unique talents in the family- he is very creative and artistic, talented at fixing things and “figuring things out”, his hyper focus helps him there for sure. 🙂

        Like

        • Good for you (and God Bless!) – My family of origin was also “medically complex” (great language, I think I’m stealing it).

          Another “unasked for” — it sounds like you are doing a SUPER job in a situation that many would struggle to manage at all. If your son is getting all THAT wind beneath his wings, he’s light years ahead of many non-ADDers in the grow-up-good game.

          That grief never ends thing? Boy howdy do I know that one! And I know YOU know trying to pretend that someday it will, or that “calm today” is good enough to pass for good will only make things worse in the long run.

          Sending White Light, and Happy all-the-Holidays, affirming that someone in your circle of intimacy will show up to be the wind beneath YOUR wings.
          xx,
          mgh

          You might be interested in my “Disability vs. Difference” post <— (click that, it's a link).

          Like

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