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, Anger, Denial, Bargaining,
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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You might also be interested in some of the following articles
available right now – on this site and elsewhere.

For links in context: run your cursor over the article above and the dark grey links will turn dark red;
(subtle, so they don’t pull focus while you read, but you can find them to click when you’re ready for them)
– and check out the links to other Related Content in each of the articles themselves –

Related articles right here on ADDandSoMuchMore.com
(in case you missed them above or below)

• Brain-based Coaching with Madelyn Griffith-Haynie

• Symptoms of Attentional Struggles
• Differential Diagnosis – Part 2 – why you need to care
• ABOUT neurological disorders
• Reframing
• Shifting your Come-From
• Evergreen

• A LinkList of all articles in the Grief Series

Other related content here on ADDandSoMuchMore.com 

• ADD/ADHD and TIME: 5 Systems Basics (underscoring our brain’s need for food-water-exercise & sleep)
• Shifting Our Come-From (changing where we stand to view our situation)
• ABOUT Black and White Thinking (change readiness mandates a shift to grey)
• Escaping the Frame Changes the View (what it will take to allow us to reach different conclusions from the same set of facts)
• Changing our Rules of Engagement

Related Content ’round the ‘net

• Recurring Grief with Chronic Illness (picnicwithants)
• Coping With Grief: How to Handle Your Emotions (everydayhealth.com)
• The five stages of grief (queenlioness1962.wordpress.com)
• Are You Afraid of Grief? (lifewithoutbaby.wordpress.com)
• Preparing for Grief (everydayhealth.com)
• Grief (staceylacik.com)
• Having a Special Needs Child and the Grief No One Talks About (mompluskids.com)
• Nine things I’ve learned about grief (randomthoughtsfrommidlife.wordpress.com)
• How Valuable is our Grief? (csahm.com) – Christian StayAtHome Moms
• Grief. (mimansajaiswal.wordpress.com)
• Grief (thegearsofme.wordpress.com)
• A WORTHY VOICE: “I’ll take it to my grave.” (theadoptedlife.com) – AMAZING

BY THE WAY: Since ADDandSoMuchMore.com is an Evergreen site, I revisit all my content periodically to update links — when you link back, like, follow or comment, you STAY on the page. When you do not, you run a high risk of getting replaced by a site with a more generous come-from.