The Interplay between Diagnosis and Grief


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Exploring the Post-Diagnostic Grief Response 

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

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Question: What do the following expressions
have in common?

  • “Oh thank goodness!  Now I can have a life!”
  • “You think I have what?” “Why didn’t they find this out before?”
  • “Why my child?” 
  • “He’s a perfectly normal BOY! Why do they have to pathologize everything?”
  • “I don’t need medication, I just need to try harder now that I know what I’m dealing with.”
  • “Those @#$% doctors don’t know anything!”
  • “If only I’d known this earlier, my life would have been completely different!”
  • Tell my boss?  Are you nuts?”

Answer: They are all various expressions that have been uttered in response to diagnosis — each expressing one of the various stages of grief that we all cycle through on our way toward a new acceptance of ourselves and those around us. They represent steps on the pathway to acceptance of a diagnosis and its integration into our lives and our new sense of Self.

The majority of the items above are statements uttered by one or the other of my clients, upon receipt of an official diagnosis – out of their mouths practically immediately. (The first one was my own, by the way)

Did you notice that some of the expressions represented the response of the individual diagnosed, while others came out of the mouths and minds of someone close to the person with the diagnosis?

Yep. Nothing changes our view of reality quite as quickly as a diagnosis.

In the few seconds it takes a professional to assign a label to a set of symptoms and speak it aloud, everything suddenly looks very different in the lives of those who must adapt to this seemingly brand-new reality.

Everyone involved has no choice but to respond to that change in some manner. Even individuals who adapt to change fairly well otherwise tend to struggle when the need to adapt is initiated by a diagnosis.

So what does diagnosis have to do with grieving?

A lot.  Diagnosis changes everything.  As everyone involved responds to the sudden change that diagnosis represents, the grief process is initiated by the loss of whatever they had believed (or wanted to believe), right up to the moment the diagnosis was uttered.  We may not mourn, but still we grieve.

Coming to terms with change is a process.

Although most of us are relatively resilient, finding a way to deal with whatever life throws our way (effectively enough), grieving for the loss of what was takes time. It happens fastest with conscious attention to the process.

Individuals who tend to cope with life by pushing unpleasant details “down,” whether deciding “I’ll think about it tomorrow,” like Scarlett O’Hara, or soldiering on stoically regardless (paying no attention to “the elephant under the rug”), will eventually discover the limitations of that approach.

I would like to suggest that perhaps some of the difficulties and roadblocks you are experiencing in your life have a direct connection to some unprocessed grief directly related to your diagnosis, whatever it is.

Because until we consciously acknowledge and work through what’s going on in our individual-specific grieving process, we will continue to cycle through its phases unconsciously reacting, but never truly at choice.

Until we are at choice it is difficult to move forward.

We are all familiar with mourning and grieving

There have been incidents in most of our lives that have taught us to expect the appearance of grief after the loss of something significant:  the death of a loved one, the loss of a job, the dissolution of a marriage, or in reaction to a serious health crises.

Many of us are also familiar with a response that is similar when our expectations are disappointed in a significant manner:  not getting into the college of our choice, being passed over for a promotion, or hearing that our children will not be spending the holidays with us this year, for example.

Sometimes, when expectations are disappointed, the strength of our emotional reaction surprises us, since it seems we have, in fact, lost nothing but a hoped-for outcome.  It makes no sense, we argue.  Nothing was actually lost, so there is nothing to grieve.

The loss of a potential future

The truth is that anything that suddenly impacts our sense of who we are will trigger the grief response to some degree, even when the change seems to be one that will ultimately lead to a significant improvement in our situation.  Consciously or unconsciously, we must say goodbye to a particular imagined future, coming to terms with our fears about how the sudden change in our experience of reality will impact the outcome of our hopes and plans for our futures and our lives.

The Process of Grief following Diagnosis

Phillip Martin, artist

Most ADD professionals have observed in the lives of their clients, that part of the process of coming to terms with their ADD diagnosis — learning to reshape their lives to work with it successfully — includes a predictable grieving process.

Some clients and patients take longer to come to terms with the process, but it seems to take at least a year for things to restabilize.

Until we have gone through each landmark – each of the holidays and days of personal significance – we continue to experience the disorientation of the difference between what we have always expected and what our experience is now.

It’s a PROCESS

  • Although there are identifiable stages that occur, no two people follow exactly the same trajectory.
  • No two individuals demonstrate the same behaviors and reactions to each of the stages.
  • We vary in the degree of awareness with which we step through the process, which impacts the directness with which we move through the stages.

There is only one absolute about the grieving process: 
we have to go through it to get through it.

What have we lost by the confirmation of diagnosis?

It’s different for each of us, depending on what we value, what we want for ourselves and our lives, and the nature of our diagnoses, but most of us will be able to relate to the list below:

  • Our sense of mental and physical health: a belief that we are “normal” (whatever that is)
  • Our sense of efficacy: The feeling that we are in control of our lives and our functioning (or could be if we put enough time and effort into it).
  • Our sense of autonomy:  our belief that we can function without help (especially when the diagnosis is physical, and whenever medication is suggested at the time of diagnosis.)
  • Our sense of potential mastery:  The belief that some day we would have [whatever particular hoped for outcome the diagnosis can now be “blamed” for].

A few items mentioned by ADDers include a sense of time, a sense of direction, and an organically organized lifestyle that empowers their ability to follow through.

Those whose diagnoses include physical components are also likely to feel the loss of potential physical accomplishments (even when they had never taken any steps toward the goal and had no concrete plans to do so before the sudden realization that it would no longer be an option to do so), like running a marathon, playing par golf, or surfing in Hawaii, for example.

  • Our imagined perfect future if we didn’t have [whatever it is], or if we had found out sooner.
  • The awareness of “real” losses that resulted from not understanding ourselves in the context of our diagnosis:  friends and intimate relationships, jobs, degrees, and more! This is particularly applicable for those with psychological disorders and neurological dysregulations.

ABOUT the Stages of Grief following diagnosis

Grief isn’t logical — it’s emotional, psychological and neurological.

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 period,” and regardless of the level of resiliency with which we process, we are grieving. We are grieving for our past and for our future as we’ve imagined it.

Following diagnosis, judging by my twenty-plus years of coaching experience, 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.

As we work our way toward the stage I refer to as “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

We will have reached the stage I call “positive acceptance” when we are able to incorporate a vision of the future that can include our diagnosis without identifying with it, embracing our potential for change and growth in expected and unexpected ways.

Positive Acceptance reframes the impact of our diagnosis significantly.

STUCK

It is only when we become “stuck” in one of the stages of 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.”

Identifying the stages so that we can place ourselves clearly into one of them can make us feel better immediately — regaining our sense of control in a very real, brain-based manner.

Once we are back in control, we are able to process our emotions with greater velocity.

When we can identify where we are in the process of dealing with post-diagnosis grief, we might discover that some of the difficulties we are experiencing are primarily a result of being stuck — where we keep cycling back through various stages, rather than passing on to positive acceptance, the place where we are ready and able to move on with our lives.

Getting Unstuck

The objective of the Grief Series is to raise “grief awareness” — to help you identify grief when it appears, to understand and accept that your reaction is a normal and predictable part of this business of living life, as well as to introduce a few techniques that may allow you to move on as quickly as possible, much stronger, more focused, and more in control as a result of your efforts.  So stay tuned.

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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!"

20 Responses to The Interplay between Diagnosis and Grief

  1. Pingback: Impulsivity & Anger: Don’t Believe Everything You Think. – The Militant Negro™

  2. Pingback: Impulsivity & Anger: Don’t Believe Everything You Think | ADD . . . and-so-much-more

  3. CMSmith says:

    Thanks for the link Madelyn.

    Like

    • You’re very welcome. Thanks for stopping by to check it out.
      xx,
      mgh

      Like

  4. The grief associated with diagnosis is certainly a process / continum that is very fluid at first and to some extent can always be. This is a wonderfully helpful tool. Thank you for sharing these ideas.

    Like

    • Thanks for ringing in. See comment re: links to your content in my reply to genesisfix. It really DOES take a village to educate a world, and our divergent takes make everything richer, IMHO!
      xx,
      mgh

      Like

  5. mrs fringe says:

    Such an important topic, one that is regularly discussed between friends of mine who are medical needs moms. Any chronic and or life threatening diagnosis results in a grieving process, painful but necessary.

    Like

    • Painful but necessary — SO true! (accent on the *necessary*) What we all like to pretend is that we can CHOOSE to process or not – like if we say “not” it will simply go away by itself.

      Pay no attention to the man behind the curtain!! OK, but he’s still there, whether I pay attention or not, and there is value in remembering that the interface is not the source.

      Unprocessed grief, unlike the Wizard of Oz, never stays behind the curtain. And when it comes out, we do really ODD things and misinterpret the source, exacerbating all.

      Better to CHOOSE when grief comes out for a chat, than to wait until it simply cannot stay “hidden” a moment longer. Second best is being quick to recognize WHEN unprocesssed grief comes out for a chat and process what we can before we send it away again.

      Because unprocesssed grief turns quickly into fear and avoidance to protect ourselves from more of same — which rarely to never helps, and almost always creates problems we wouldn’t otherwise have had to deal with.

      My heart REALLY goes out to the Moms, following dx — even those who are aware of the need to do the grief work are overwhelmed trying to accommodate the pragmatics that “suddenly” follow dx. Again, its a process that I find is easier to step through simply by being aware of the dynamics of grief and putting a name to feelings vs. struggling to ignore them or overcome them in some fashion because they are “shameful” or “inappropriate and illogical” – etc.

      Before this response becomes its own blog, let me simply say THANKS — for reading and for taking the time to comment.
      xx,
      mgh

      Like

      • mrs fringe says:

        Illogical. Sometimes there’s a desperate (if delusional) need to cling to logic when nothing seems to make sense. 😦

        In my bizarre little corner of the world, grief never quite comes to an end or resolution. Complex medical needs are complex in every way. Regardless, it still has to be processed as we adjust to each new “normal.”

        But grief work is work, and sometimes the work of getting through each day, figuring out how to do what has to be done NOW, means we have to put that work on hold.

        And thank YOU. 🙂

        Like

        • We ALL do the best we can at all times – I sincerely believe that. It’s not always the best that ANYBODY could do, but it is what *we* can manage at the time. Shoot, most of us strain mightily to do what “little” we do already – (“little” only in the eyes of perfection)

          Grief work is no different, IMHO — and sometimes all we CAN do is acknowledge – “oh yea, that grief thing again” before we must turn our attentioin to matters more immediately pressing. “Hand me a kleenex, outa’ my way, and I’m sorry I bit Sally’s head off, still grieving so a bit unbalanced, pay no attention to the emotional affect — NEXT!”

          That is *still* processing, however — we get credit, dag-nabit!! Is there MORE that must be done? – well, yeah, but when isn’t THAT so?

          The value in even a cursory understanding of grief is NOT to beat ourselves up because we don’t have time to process completely, but to lead us to an understanding that will inspire us to be gentle with ourselves WHILE we process in dribs and drabs, as best we can for however long it takes for whatever reason.

          Who knows whether taking time off to “process” wouldn’t leave us with a whole bunch of NEW stuff to grieve? (I mean, do YOU know anybody with a life that gives them that option that we could ask? I sure don’t!)

          xx,
          mgh

          Like

  6. Such an important topic — I’m surprised it’s not addressed more often. Losing your old sense of self is a huge loss, and the grieving process is something that just doesn’t seem to get factored in at all.

    We’re supposed to just suck it up and deal with it… but there’s that pesky human condition business…

    Like

    • Pesky INDEED!

      I endeavor to hold onto the belief that, as the kids say, “It’s all good!” – that *everything* we encournter is part of the growth process that turns us into human beings worth knowing, and that our power and control in the matter is limited to how we choose to hold it (i.e., whether to use it for our upliftment and growth or to agonize over the “crap” that befalls us).

      Nice idea, but difficult to implement, in my experience. I can’t help it — I want my life to be easy and enjoyable — and I doubt that I am unique there! (I’m with Talula Bankhead in my reaction to change, “What fresh hell is this?”)

      I have come to believe that the Grief Cycle *forces* us to continue to revisit the “crap” until we are able to make the positive choice. So “sucking it up” is a bad idea for all SORTS of reasons!!

      Like a fingertip continues to fester until we remove the splinter, painful memories and dashed hopes continue to fester until we process them – or so it seems in my observations of how life works. So it seems to me that it’s not really POSSIBLE to keep pushing things down.

      Since that does seem to be what’s so, I’m with you in the surprise that the pragmatics of processing emotions is not addressed more widely and more often.

      Of ALL of the changes that come with growing older, “losing your old sense of self” (great language!) is one of the most difficult, IMHO.

      Diagnosis moves the need to address the “who am I REALLY?” question UP (closer to the beginning of our life paths than it is for those who don’t feel the prompts to take a look until aging makes it practically impossible NOT to — i.e., when their lives are almost over).

      The question remains, at least for ME, is how to hold on to the idea that investigating the benefits of a change is a GOOD thing, following a hit that rocks our world view. So part of the reason for the Grief series is an attempt to explore THAT question.

      Thanks for ringing in!

      xx,
      mgh

      Like

  7. The formal diagnosis is most likely received with shock and a profound sense of loss. The sense of loss is complicated because the child is still present. In fact, nothing has really changed other than the confirmation of a suspected condition. The grief is real and it is further complicated with mixed emotions.

    Like

    • Thanks for ringing in here. I especially appreciate your underscore of the fact that only perception has changed – the facts remain the same as they were before we became aware of them.

      Ditto re: the complications of mixed emotions. Our brains crave safety and security (i.e., the “known”) to an extent that doesn’t always serve our highest good, so as much as it also craves continued stimulation (i.e., novelty and change), the conflict between the two “needs” sets us up for psychological ambivalence we need to process if we are to continue to move forward in positive directions. GREAT “catches.”

      Sorry for the time it has taken for me to approve and respond. Akismet threw you in the spam trash. I took the chance of “unspamming” you — sure looks like a legitimate comment to me, despite the fact that it came from a domain that sells something (uh, don’t we ALL?)

      As you can tell from the upper right column on every page, I get *a lot* of spam, so I must allow the filter to be aggressive (I’d never get ANYTHING done if I had to deal with all the spam manually, and the software is pretty darn good at separating the sheep from the goats). The downside is that I sometimes don’t get a chance to approve legit comments. Glad I found yours.
      xx,
      mgh

      Like

  8. Reblogged this on braininjuryselfrehabilitation and commented:
    Please read this about Post-Diagnostic grief response. I believe everyone can relate to this in the midst of trying to get a proper diagnosis and treatment. Explore this site at addandsomuch.com there are so many great articles that relate to chronic illness, brain dysfunctions of various degrees and TBI. Let me know what you think? What is helpful?

    Like

    • Thanks, Edie – you’re the BEST!

      In the interest of “gathering the tribe,” I’d also appreciate the comments of the TBI community in the comments section of a new series in development where I want to explore CREATIVITY – the upside of not being ABLE to do things in same ole/same ole fashions.

      I strongly believe that this is an area where those of us in the ADD/TBI/stroke etc. communities have a thing or two to teach our so-called “neurotypical” friends and neighbors. GREAT for our self-esteem too, huh?

      I REALLY want to try to get a dialogue going that explores and expands upon the POSITIVE effects of the ways that our brains work (“striking” while the iron is hot – following up on a recently released “Importance of Creativity” survey that’s getting a lot of play in the blog-o-sphere currently).

      Anything you can do to encourage participation THERE would be GREATLY appreciated. (I’m also in the process of developing a beta version of a “creativity seminar” of a very different [brain-based] sort – and ANYONE who participates in the comments section as I run a few ideas up the flagpole will be invited as my guests and acknowledged as contributors in any course materials I develop.)

      xx,
      mgh

      Like

      • I definitely will encourage the TBI community to respond or leave comments in your new series. Let me know what is happening so we can get a dialogue going. I will participate and will happily encourage involvement of others.

        I’ve just been blessed with a day as our friends visited with us this Thanksgiving. Either too much turkey or just a day filled with laughs! Imagine our friends balancing a spoon on his nose (analytical chemist)! I think I should put this picture out “I R a PhD!” He recently retired but is also primary caregiver of his wife who unfortunately M.S. left her tetraplegic (Librarian Master’s degree). He was recently diagnosed with Parkinson’s but I knew it for a few years. We’ve had them over the past 3-4 years for Thanksgiving Day!

        Hey, I really count my blessing! I never want to have someone take care of me…I’d rather be checking out! Her twin sister just died in September and her brother just got power back on this past week in Long Island, NY where she is originally from. Her mother was moved to a different nursing home because of Hurricane Sandy. With all that…we laughed so hard had tears and shared so many fun times!

        In the presence of friends…one can always “just be” instead of some facade! They’ll be visiting in Michigan mid December again for a few days. Have you ever had a dear friend getting into 12 feet of water and I knew she wouldn’t be able to swim (she was once a swimmer!)…Good thing I’m a survivor!LOL That’s where confidence can take one!

        I knew she wouldn’t be able to swim, so I prepared my mind of how to handle her! I told her husband what I expected so he was prepared. She complained about all the things she use to do, as I pointed out all the things she could do because the movement of paralyzed extremities doesn’t work unless one is in water. Trust me, I’d never let a friend go under!

        It was one of the most physical challenges I took on this summer (mind-over-matter) but I’m extremely calm person. I’m looking forward they’ll be staying with us in Michigan so I can take her in the water again! Who doesn’t deserve the ability for their body to move freely…even if it’s in water. It’s a freeing experience!

        Now that I shared my day with you hope you can follow this rambling! Happy Thanksgiving!
        Edie

        Like

        • Edie, I never cease to be AMAZED by things you share — a variety of demonstrations of your courage, your heart, your Vision, and your ready access to your sense of humor.

          You are a wonderful model for me, for my readers, for my community – and for the universe!!!

          Thank you SO much for taking the time to share with ME.

          (just so I don’t sound like a suck-up, I’m not so sure about that spoon thing 🙂

          xx,
          mgh

          Like

  9. This is the best article and easiest to understand on grief! I can easily identify with many areas, especially knowing so many people who think stuffing things is healthy! We all do a bit of that just to keep functioning and just keep on moving so I think there or different levels of this going from healthy to unhealthy!

    The awareness of “real” loss is certainly significant. Excellent! Thanks for all you do to help everyone.

    Like

    • Thank you VERY much for taking the time to add your feedback – I was eager to hear how it would relate to the TBI community.

      The “balance” between doing what you must to move on, remaining aware of what you are feeling, and taking the time to process same is TRICKY – I agree that it’s a continuum. Nobody can simply STOP LIFE to process grief, but “soldiering on” without the awareness is certainly maladaptive and will boomerang.

      Thanks for all YOU do as well. I’m chipping away at your site as I am able. Info-dense as well as anecdotally relevent.

      xx,
      mgh

      Like

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