You 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 with often more downs than ups, as I’ve written about here, here and here, for example. But researchers in Spain now suggest that there are actually four distinct stages that are predictably common among most patients on that road.
A new study on what’s called the Patient Health Engagement (PHE) model of recovery reports that we not only need to adjust emotionally to both a medical diagnosis and then living with its associated condition, but our whole psychological and social self-concept requires adjustment, too.(1) In other words, we go from being a once-healthy individual to suddenly becoming a sick patient – a reality that nobody wants to sign up for. See also: “To just be a person, and not a patient anymore”
Most research on illness recovery has been focused on our individual characteristics:
- our unique personality traits
- ethnic background
- our own beliefs about what being sick actually means
But how do we figure out how to move along that road toward becoming a person engaged in our own health?
Here’s how Spanish researchers identified the four key stages of this roadmap:
1. BLACKOUT PHASE: In this stage of the PHE 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 this disease 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. 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, 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 miserable stressors that hit us at the onset, yet may still experience trouble when something else in life 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 health care professionals’ advice and support, we can also start to see the importance of playing a far more active part in this health care 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 of us move on to try to help other people going through what we’ve already gone through, or to help prevent it in the first place.
The Spanish researchers suggest that there are no timelines for specifically how long we might spend in each of these four stages – and there certainly may be some 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 this 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, the time that they generally begin feeling “normal” once again. Not the same as the old familiar normal, perhaps, but far more “normal” than they have felt while worrying that normalcy is but a dim memory. This milestone can vary, of course, person by person: some people seem to recuperate remarkably uneventfully post-diagnosis, while others take a whole lot longer to feel even remotely like their old selves. 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 return to work, start driving or having sex or flying once again – as if their patients had just had a minor ankle injury instead of a frickety-frackin’ heart attack. See also: “When are cardiologists going to start talking about depression?”
But during that recuperation, you may feel like you’re on a tortuous logging road of emotions ranging from feeling terrific sometimes to feeling terrible at other times – especially 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 in older adults.
- Get out and walk daily. Daily activity will help you have a healthy mind and body. Just do something. Move something.
- Resume hobbies and social activities you enjoy.
- Share what you’re feeling with your family, a 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 chat with and learn from).
- Get a good night’s sleep. And try taking a brief afternoon nap – but not too long, so that you will be better able to sleep at 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. If your cardiologist has not yet referred you to cardiac rehab program, ask for a referral. If your cardiologist tell you that you don’t need it, take Dr. Sharonne Hayes’ advice to “Find a new cardiologist!“
NOTE FROM CAROLYN: I wrote much more about the slow progress along this bumpy road from diagnosis to getting 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 (PHE model): a psychosocial theory to understand people’s meaningful engagement in their own health care.” Patient Preference & Adherence, 2018 July 19; 12:1261-1271.