The bumpy road between diagnosis and getting better

23 Sep

by Carolyn Thomas    @HeartSisters    September 23, 2018

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 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:

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 38,000 members – all women 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!

I’ve written a lot about how we adjust to a cardiac diagnosis over the years, including in my book “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University Press, 2017).

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.

See also:

 

15 Responses to “The bumpy road between diagnosis and getting better”

  1. Maggie September 24, 2018 at 9:26 am #

    Thank you so much for this blog. I’ve read several of your entries as well as the comments left by other women. They have been really informative.

    I have not been diagnosed yet and I’m quite terrified. I have hyperthyroidism, I developed tachycardia at the beginning and each episode made me feel like I was dying. My thyroid is under control now but I still get tachycardia. I am only taking my thyroid medication (a low dose) and propranolol for the palpitations. It’s been two weeks since my last appointment with the cardiologist and today they’ve put the Holter monitor on me.

    Unfortunately tachycardia is not my only symptom anymore. I get a horrible backache which I thought was my posture but I’m not sure anymore, it’s usually on my left shoulder blade and my neck also gets some pain. My legs have started hurting and so do my upper arms, my elbows and hands (this has been going on for the last 4 days) The most unusual symptom is that I get a dull pain in my chest (closer to my collar bone) and at the same I get this incredibly awful feeling in my whole chest, an awful overwhelming fear that something is wrong and it makes me panic but it goes away very quickly, like in a minute. I suffer from anxiety so I tried to tell myself I’m just over reacting to the pain but it’s just hard when it feels like the pain is accompanied by that awful feeling in the chest simultaneously.

    I have been to the ER many times before, they always tell me it’s my anxiety. They only run an EKG and the blood enzymes (sometimes) and send me home. My cardiologist had told me my heart was perfectly fine two months ago and that my tachycardia was caused by my thyroid only. He did an EKG, Holter monitor, heart ultrasound and a stress test.

    I felt quite relieved then but now that my thyroid is “normal” I feel quite hopeless at this point. I’m not asking to be diagnosed here but did anyone have those impending doom feelings accompanied with pain but that lasted very little? I think I’m going crazy. I’m 28 years old?, my grandpa died very young (40) of a massive heart attack and my grandma had angina.

    Like

    • Prunie22 September 24, 2018 at 12:42 pm #

      Hi Maggie: When I experienced my atypical sign of something wrong at 3:30 am 4 years ago, I too, had an unusual different fear (like a deer seeing the headlights of a car), I popped up and sat up frozen in the bed. The pain was piercing in my upper left back. Didn’t know what to do, so I got up gently and took a baby aspirin and a gas pill, and prayed for the best.

      The next day began my job of figuring out what was wrong….knowing my family history of heart disease and massive heart attacks, my testings started. Of course, it was the catheterization that told the doctor I had 3 way blockage. I successfully had the triple bypass and by the grace of God, I’m sill here.

      Liked by 1 person

      • Carolyn Thomas September 24, 2018 at 1:11 pm #

        Prunie, that’s a good “deer in the headlights” description of your sense of impending doom symptom. As I said to Maggie (below), that does turn out to be a very common symptom among heart patients, but it’s also a common feeling among those living with an anxiety diagnosis, so that symptom in itself doesn’t necessarily say “heart attack”. Doctors will look at both symptoms (all symptoms) and diagnostic test results to solve the mystery…

        Like

        • Prunie22 September 24, 2018 at 1:20 pm #

          Thanks Carolyn: I failed to mention that I am a PTSD survivor and I have chronic depression and anxiety which I am being treated for, for at least 18 years. God Bless you and this site!

          Liked by 1 person

          • Carolyn Thomas September 24, 2018 at 5:06 pm #

            You are the double-whammy winner in the Sweepstakes of Yucky Diagnoses, Prunie! 😉 A number of studies on veterans with PTSD have found that heart disease is more than twice as common among those previously diagnosed with PTSD.

            Like

    • Carolyn Thomas September 24, 2018 at 1:03 pm #

      Hello Maggie – I’m not a physician so cannot comment on your specific situation, except to offer some very general observations. First, having scary symptoms can make anybody feel very anxious, and if you already have a diagnosis of anxiety, those symptoms can feel even worse than they are.

      Right now, you just don’t know if the symptoms you list are heart-related or not.

      As you know, a rapid heart rate (tachycardia) is one of the most common signs of hyperthyroidism. And some studies suggest that, while low-dose propranolol improves tachycardia, higher doses of the same drug do not, and in fact may worsen symptoms. You might want to ask your thyroid doc for a complete medication review.

      I wanted to address this impending feeling of doom you mention. This is in fact a common symptom experienced by women during a heart attack, sometimes a brief sensation but more often overwhelming and long-lasting, yet I’m guessing that this feeling is also common if you are living with anxiety. It may be that whatever you’re taking for anxiety also needs to be reviewed. You are NOT going crazy, even though you probably feel like you are at this moment!

      It’s important not to automatically attribute a cardiac cause to a symptom that’s also shared by several other conditions. Your leg pain, for example, would be a very unusual symptom among heart patients, but may be a sign of an entirely different issue. Something is causing it – you just don’t know what yet.

      Try keeping a Symptom Journal (date, time of day, what you were doing/eating/feeling in the couple hours immediately leading up to the symptom). Many of my blog readers have told me that this kind of Journal can often reveal a pattern that helps you and your doctor arrive at a diagnosis. And in between symptoms, remember to go outside to take breaks from thinking about symptoms.

      Finally, it turns out that your grandparents’ heart disease history, while shocking because they were so young, does not impact your own cardiac risk (evidence shows us that only parents or siblings who have experienced heart disease at a young age represent any type of cardiac risk factor for you). So focusing on this cardiac history of your grandparents does not help, and it most likely just makes you feel worse, even though their experience is likely not relevant at all to your own situation.

      So much of medicine is simply figuring out what the problem is NOT, especially for a person your age. I’m glad that you’re getting all the appropriate diagnostic tests I would expect, and especially glad that you’re getting your Holter monitor today because that may provide some clues to this medical mystery. Best of luck to you…

      Like

  2. Stephanie September 23, 2018 at 11:29 am #

    I am very thankful for your blog and book as well. It is a huge source of comfort to me as I feel isolated in this new diagnosis.

    I am 48, married with five kids and my world turned on its head 4 months ago with a heart attack from coronary artery spasms.

    After months of not getting better and med changes and additions the thought is microvascular spasms. I not overweight, never smoked, excellent cholesterol, exercised regularly but will admit high stress levels with jobs and kids etc. Felt strange for a few years but thought stressed, tired etc… It has been a long series of emotions, uncomfortable and scary symptoms, and wondering when I will feel normal again?

    Being in a rural area I crave being able to share with others in the same boat and get advice, tips and hear others progress and quality of life with this condition. I have been able to take part in cardiac exercise rehab, that has helped build some strength but more of the emotional rehab is what I need.

    Thank you for the words in your book I can relate so well to many the chapters helping to make me feel somewhat normal in this world of heart conditions. Would love to connect with other women experiencing same issues.

    Liked by 1 person

    • Carolyn Thomas September 23, 2018 at 2:58 pm #

      Hello Stephanie and thanks for sharing your unique perspective here. You have sure been through a lot at your young age. I agree with you: Emotional rehab is exactly what you need! Being in a rural area (and with five kids to take care of!) means you’ll have to be creative in getting the kind of emotional support you need at a time like this.

      You might want to check out Annette Pompa’s Non-Obstructive Coronary Artery Facebook group of over 500 patients. FYI -she wrote this guest post for me a while ago. Also, the WomenHeart online support group is much larger and covers all kinds of heart conditions (by categories) and is also worth checking out; they have a whole section devoted to emotional and psychological health topics. Good luck to you…

      Like

  3. LuAnn May September 23, 2018 at 5:33 am #

    First, thank you for Heart Sisters post every Sunday. I finally got your book. Enjoying the hope with every page. It has taken me 2 years to feel like a person again. Totally a different person, but I am living life again.

    Thank you Carolyn for walking it with me.

    Liked by 1 person

    • Carolyn Thomas September 23, 2018 at 7:56 am #

      Oh, LuAnn… Your comment made my day! So glad you are enjoying my book. In my preface, I described it as the book I was looking for – but couldn’t find – as a new heart patient. Back then, I wasn’t interested in reading about cholesterol or drugs or heart-healthy recipes. So I just wrote what I wish I’d been able to read as an overwhelmed patient myself.

      It took you two long years, but I’m very glad to hear that you’re “living life again!”

      Like

  4. Joan Johnson September 23, 2018 at 5:01 am #

    One of the things that really bothered me was having to take medications Before, I rarely took even an aspirin I found myself obsessing over whether it was time for this or that pill, whether I had already taken it, etc A dear friend suggested getting one of those weekly pill boxes I load it up every Sat and I can see instantly whether I’ve taken a pill or not. The rest of the time, I can forget about it A small thing, but it helped me get out of the patient mindset.

    Liked by 1 person

    • Carolyn Thomas September 23, 2018 at 5:25 am #

      That’s a good point, Joan. Going from ‘zero to 60’ after a lifetime of not taking pills takes some adjusting. Those weekly pill boxes are a terrific help. Pharmacies can also prepare weekly bubble packs of pre-sorted meds – very handy for those who are taking their pills a few times every day.

      Like

      • Jenn September 23, 2018 at 2:58 pm #

        I now take nearly 30 pills per day but the pharmacy would charge an extra $50/month for individual packaging for me. Once a week I fill up my 4 daily boxes for breakfast, lunch, supper and bedtime.

        Liked by 1 person

        • Carolyn Thomas September 23, 2018 at 3:56 pm #

          Thanks Jenn – I forgot to mention that extra charge, which can add up!

          Like

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