The bumpy road of the freshly-diagnosed

by Carolyn Thomas        @HeartSisters

bridge-2490738_1280You probably already know that it can be a scary road indeed leading from the moment you hear that initial diagnosis until the day you are able to start thinking of yourself as a person first, who just happens to be a patient. Until then, it’s a bumpy road to recovery, often with more downs than ups, as I’ve written about here and here, for example. But researchers in Spain suggest that there are often four predictably distinct stages in a recovery roadmap.

Their study on what’s called the Patient Health Engagement Model of Recovery reports that we not only need to adjust physically to both a medical diagnosis and its associated effects, but our whole psychological and social self-concept can require adjustment, too.(1)  See also: “To just be a person, and not a patient anymore”

Most research on illness recovery has been focused on our individual characteristics:

Here’s how Spanish researchers identified the four key stages of their roadmap:

1. BLACKOUT PHASE:  In this stage of the recovery model, we may feel distressed and overwhelmed by the new diagnosis and all that needs to be done to manage life from now on. We can experience feelings of deep sadness, fear or anger. Consequently, we tend to interact passively – not assertively – with our healthcare providers.  We may prefer to rely on others to make important healthcare decisions at this early stage.

2. AROUSAL PHASE:  This stage mainly occurs when we still feel psychologically vulnerable around the diagnosis.  Every unexpected change in symptoms can cause profound emotional responses. We can also feel psychologically frozen or hypervigilant, anxiously waiting for the next shoe to drop, very focused on this sick body and every minor twinge. We may feel anxiously dependent on keeping in touch with physicians or other trusted experts during this time. We start to learn a bit more about our diagnosis, and how it may affect life that now seems very different from the life we once knew.

3. ADHESION PHASE:  In this stage, we have slowly begun to accept what has happened, and to overcome some of the scary stressors that hit us at the onset, yet may still experience trouble when anything else significantly changes (e.g. going back to or being retired from work, going back into the hospital, etc.)  Although we still tend to rely frequently on healthcare professionals’ advice and support, we can also start to see the importance of playing a far more active part in this healthcare road trip.

4. EUDAIMONIC PROJECT PHASE:   2,000 years ago, Aristotle originated the concept of eudaimonia (from the Greek word “daimon” or true nature). He deemed that true happiness is found by doing what is worth doing. In this stage of recovery, we become more clearly aware of what happened to our bodies, so are able to become more active in quality-of-life planning for our own future. We cannot do this planning until we reach that important awareness phase. We can now accept a “patient identity” as merely one of the many features in a person’s life – NOT the only or even necessarily the most meaningful feature. We can start to imagine and create future goals. We’re more effective at information-seeking, and begin to understand our bodies and what the heck has happened so far. We also begin to see our healthcare professionals as allies now, and ourselves as active members of a larger care team.

This is also the stage in which some people try to help others going through what they’ve already gone through, or to help prevent it in the first place.

The Spanish researchers suggest that there are no concrete timelines for specifically how long we might spend in each of these four stages – and I certainly recall lots of slip-sliding back and forth in a two-steps-forward-and-three-steps-back dance, which is to be expected (so try not to panic if it seems that you’re not doing recovery in the correct order!)

My blog readers often point to their one-year anniversary, post-cardiac diagnosis (what I like to call the “heart-iversary”) as a hugely meaningful milestone along this road to recovery. Not necessarily the same “normal” as the old familiar normal,  but more than when they were worrying that normalcy was but a dim memory. This milestone can vary, of course, person by person: some people seem to recuperate remarkably uneventfully post-diagnosis. Others take a whole lot longer to feel even remotely like their old selves, which can cause frustration and impatience.  It takes as long as it takes. See also:The ‘loss of self’ in chronic illness is what really hurts

Many physicians, on the other hand, seem to use a different type of predictive crystal ball when answering heart patients’ questions like: “Doc, when will I feel like ME again?”  They will describe, usually in terms of short little weeks, a minimal recuperative time after which their patients can, for example, once again:

return to work,

-start driving

-have sex 

fly

I wrote recently about the impossibly wide range of cardiologists’ responses to a common question from heart patients: How long does it take to heal after open heart surgery?” (the routine answers range from six weeks to six months, so which is it?)

But during that recuperation, you may feel like you’re on a tortuous logging road of emotions – ranging from feeling good sometimes to feeling terrible at other times – especially common during the early days.

See if these tips might help you along the way:

  • Get up and get dressed every day. Do NOT stay in bed all day long.
  • It may be tempting to want to isolate yourself during early days – try not to do this, as it’s been associated with poor quality of life, especially among older adults.
  • Get outside and walk daily. Daily activity will help you have a healthy mind and body. Just do something. Move something. Go slow, take it easy, but move.
  • Resume the hobbies and activities you enjoy, re-evaluate those you don’t.
  • Share your feelings with your family, a close friend, a pastor or support group. Consider WomenHeart’s online support group on Inspire (it’s open 24/7, free to join, with over 44,000 members – all women like you living with heart disease to vent to or learn from).
  • Make a good night’s sleep a high priority. And try taking a brief afternoon nap – but not too long, so that you will be better able to sleep that night.
  • Remember that feelings of situational depression that are so common among heart patients are almost always treatable and temporary. Ask your doctor for a referral for professional talk therapy, or make an appointment with a pastor or a peer counseling service.
  • VERY IMPORTANT: Register for a cardiac rehabilitation program – emotional support is just one benefit to this supervised program of physical exercise proven to reduce risks of further cardiac events.

NOTE FROM CAROLYN:  I wrote much more about the slow progress along this bumpy road from diagnosis to feeling better in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the JHUP code HTWN to save 20% off the list price).

 

Q: Which of the four recuperation phases described by the Spanish researchers seems most familiar to you?

(1) G. Graffigna and S. Barello, “Spotlight on the Patient Health Engagement model : a psychosocial theory to understand people’s meaningful engagement in their own health care.” Patient Preference & Adherence, 2018 July 19; 12:1261-1271.

See also:

Why hearing the diagnosis hurts worse than the heart attack

Recuperation and a red leather chair

How we adapt after a heart attack may depend on what we believe this diagnosis means

Which one’s right? Eight ways that patients and families can view heart disease

Denial and its deadly role in surviving a heart attack

Surviving the crisis: the first stage of heart attack recovery

The new country called heart disease

Post-Traumatic Growth: how a crisis makes life better – or NOT

 

 

 

12 thoughts on “The bumpy road of the freshly-diagnosed

  1. Very helpful post. It has taken me a long time to be able to experience angina and irregular heart beats without a rush of fear.

    This summer I experienced a period of PTSD related to childhood trauma. This started several weeks of chest pressure and PVC’s. I was able to work thru the trauma and rest until my heart stopped reacting without thinking I was in cardiac disaster zone.

    Liked by 1 person

    1. Hello Sara – you’ve raised an important point that really resonated with me, too: that milestone period when we can experience frightening symptoms (the kind that would typically alarm most people) and somehow be able to assess them without that panicky “rush of fear” you describe. The trick is, of course, to stay calm enough so we’re not bunking out in Emergency every day, yet alert enough to call 911 should symptoms truly escalate. Telling the difference is a learned skill!

      I know my own cardiac symptoms quite often flare when I’m worried or upset, and like you, it’s taken me ages to develop some kind of ability to ride them out.

      Take care, stay safe out there. . . ♥

      Liked by 1 person

  2. Although I like to say I am in the eudiamonic stage most of the time… there seems to be a deep underlying current of the arousal phase that never dissipates.

    I believe this is due to the presence of multiple chronic health issues besides my multi-dimensional heart issues.

    Each one rears up at various times, most unpredictably, and I find myself hyper-vigilant, questioning doctors about the new symptoms or changes in condition, wanting answers that are not there.

    This can last for months before it quiets down or a NEW new normal is established.

    I had a “waiting for the other shoe to drop” attitude even before my heart issues…. I believe it started with the loss of my father at an early age, setting off a PTSD response on multiple fronts throughout my life.

    I am much better now and hope the next bump in the road of aging doesn’t throw me off the steady, sunny course I am currently on.

    Blessings Carolyn!

    Liked by 1 person

    1. Oh, you are so right, Jill! Heart disease on its own is certainly challenging enough, but when you throw one or more OTHER chronic conditions into the daily mix, it’s like living in a Wack-A-Mole game….

      In the last year, I’ve been diagnosed with both plantar fasciitis AND arthritis, each of which severely affects my mobility. These two diagnoses made me downright ornery. The PF I’d also had decades ago when I was a distance runner, so I pretty well knew the drill in terms of sports medicine/physio etc – but it’s been the arthritis that has floored me. I did NOT see this coming – which is a naive way to view new diagnoses, I know – but ironically these two very painful conditions have somehow bumped my ongoing refractory angina symptoms way over to the back burner!

      Are these just the bumps in the “road of aging” that will last a long time until they quiet down (or just become the “new normal”) – OR until a new and even worse condition grabs all of our attention? Arrrrgh!

      I envy you your “steady sunny spot” that you find yourself enjoying right now – and I look forward to that stage!

      Take care, and stay safe. . . . ♥

      Like

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