by Carolyn Thomas ♥ @HeartSisters
Kathy Kastan’s terrific book “From the Heart” was hot off the press when I survived a misdiagnosed heart attack in 2008. Hers was the first book I found that focused specifically on women and heart disease. Here’s how her own story was described on the book’s cover:
“After undergoing emergency coronary bypass surgery at age 42, Kathy Kastan found her world shifting in unexpected ways. Everything – her sense of well-being, relationships, daily routine, even her body image – seemed to change. Doctors helped her recover physically, but she had to find new methods to recover emotionally and create a happy, healthy life.”
While I read this back then, my own world was crazily shifting, too.
One of the things I remember most clearly from her book was her depiction of how the five classic stages of grief and loss* (plus her sixth bonus stage) can specifically affect freshly-diagnosed heart patients like me. Kathy, who is a psychotherapist in North Carolina, and former President Emerita of WomenHeart: The National Coalition for Women with Heart Disease, explained those stages like this:
DENIAL: This Can’t be Happening to Me
Kathy suggests that it’s pretty easy to tell when you’re in denial if you answer YES to questions like these: Do you ignore your symptoms? Do you put off going to the doctor? Do you ignore your doctor’s advice? She adds that denial may come naturally to women. And although denial is often a healthy early coping mechanism that helps us get through traumatic events, it cannot go on forever. “Gradually, those masked feelings will surface and you’ll proceed to other stages of grief.” (I spent two fateful weeks in denial after being misdiagnosed with acid reflux in mid-heart attack by an Emergency Department physician – embarrassed for making a fuss over “nothing”. And I wanted to believe him – because I’d rather have indigestion than heart disease, thank you very much!)
ANGER: Why is This Happening to Me?
Kathy reminds us that it’s not unusual for anger to creep in after the denial subsides. And while anger might be a useful emotion when expressed in a healthy way, it can be difficult for many women to express anger: “It’s important to know that anger is a normal part of grief and loss. You may be angry because of the losses you’ve experienced, the feeling that your body has let you down, the fact that your life has changed, the sheer fact that you got sick.” (See also: Choose Your Listeners Carefully)
She adds that it’s important to give yourself permission to be angry, but if anger increases, she recommends that you seek help from your doctor or a mental health specialist to get yourself back on track. (It took me a week or so after my own heart attack was finally correctly diagnosed to get really angry at that Emergency doc who had sent me home (despite my text book symptoms), and when I learned at my Mayo Clinic training months later that over 1/3 of our class of 45 women had also been misdiagnosed – I became really angry!)
GUILT: Did I Bring This On Myself? Did I Make My Family Suffer?
It turns out that it’s not uncommon to feel guilty about becoming a heart patient. We often feel responsible for our new condition – whether we could have prevented it or not. The first step in reducing guilt, Kathy suggests, is to forgive yourself: “Be patient and gentle with yourself. Look at it this way: you’ve been given a second chance to live a healthier lifestyle. When you start to change habits you feel guilty about, the guilt will start to subside.” See also: Heart Attack: Did You Bring This on Yourself?
In Chapter 6, Kathy addresses other common sources of guilt. For example: “We can also feel guilty about not being able to carry on household tasks or letting down our workplace colleagues. Mothers may be afraid they’ve passed heart disease on to their children, or may experience guilt related to grown children who have to take care of them.” (I can relate! Both of my grown kids flew home immediately to be with me while I recuperated from my own heart attack – I NEVER want to see those worried looks on their faces ever again!)
Kathy’s advice: “Go easy on yourself! And by getting past it, you move on to the next stage of grieving.”
FEAR & BARGAINING: Please Don’t Let Me Die.
Bargaining, Kathy explains, is a way that heart patients try to gain control in a seemingly uncontrollable situation. (I promise I’ll do better from now on! ) It’s also a way of dealing with your fears. Fear, she writes, is a natural response to what heart patients experience: “During the first year of recovery, once you get past denial, fear can rear its ugly head. It means you’re facing your illness head-on: What if I have another heart attack? What if I get worse? (Or even: What if I die?”)
Kathy suggests that simply knowing that fear is a normal and expected part of the heart patient’s grieving process can give us permission to work through and talk about it. “Recognize that these are normal feelings. Addressing them will help you move forward in your recovery. But if you feel stuck in this stage, seek counseling.” See also: Do You Think Too Much? How Ruminating Hurts Your Heart
I’m glad that Kathy added this additional suggestion to get through fear: “Gather all the information you can about whatever it is that’s frightening you. Ask your doctor to recommend some credible resources.” Kathy recommends the helpful WomenHeart website as a good resource. I also like the Mayo Clinic site for solid patient-friendly medical information. (I often say that after my heart attack, I was determined to become the world expert on my diagnosis. The more I knew, the less fearful I felt. Nobody else will ever care as much as I do about what’s happening to my own body. And as one of my Heart Sisters readers replied to her doctor after he mocked her with a flippant: “I didn’t know you were a researcher!” smirk, responded with this bold retort: “It’s your career – but it’s my life!”)
SADNESS: I’m Not the Same Person Anymore
This is the part of Kathy’s book that really grabbed me. She writes: “As you move through the stages of grief, you begin to adapt to a new reality. When you reach the stage where you consciously accept the fact that you have heart disease, that you will be a heart patients for the rest of your life, and that you are now a different person, you may experience sadness.
“You have lost your old images of yourself, and must now formulate some new images. Sadness actually means that you’re beginning to emerge from your grief, and that you are turning an important corner. You begin to recognize that things have changed for you physically and emotionally. This can be the first true step toward acceptance: You’re doing the difficult emotional work that’s necessary to get you where you need to be.You’re truly mourning what you have lost. It’s important to face and experience this sadness. Don’t try to escape or ignore the feelings. Talk to someone, write in your journal, or just lie down and let the sadness seep over you.”
(As Kathy found too, it took time for my own feelings of sadness and despair to ease up. I like how cardiac psychologist Dr. Stephen Parker described his own experience of post-heart attack depression (what psychologists often call situational depression or stress response syndrome. “I think the depression and anxiety following a heart attack are a bit different than the depression and anxiety that most therapists encounter, and are more resistant to treat because there are damned good reasons to feel anxious and depressed. A heart attack is a deeply wounding event, and it is wound that takes a long time to recover from, whatever the treatment.”).
But Kathy Kastan reminds us: “Even during the most intense phase, sadness won’t be with you every moment of every day. But if you find you do have prolonged and unrelenting sadness, see a counselor or mental health professional.”
MOBILIZATION, HOPE & ACCEPTANCE: I Am Ready To Move On
Many of us simply could not believe, in those overwhelming early weeks and months, that we would ever get to this stage of recovery. Kathy sums it up: “Working through all these stages takes energy, time and patience. Mobilizing yourself, having hope, and accepting your illness is the next stage – and it is empowering. You begin to think of yourself as a survivor, and no longer feel beaten by your disease. At this point, some women consider helping other heart patients. You become less self-concerned, and more comfortable reaching out to others.”
She acknowledges that while every woman’s experience is very different, many do report a sense of peace, hopefulness, and relief with time. (That one-year “Heartiversary”, as I like to call it, can represent a real milestone for us. I could never have imagined in those overwhelming early weeks and months that I wouldn’t feel this bad forever.) See also: You’re Not Always Going to Feel this Way
*Dr. Elisabeth Kübler-Ross,was a Swiss-American psychiatrist who in 1969 wrote a book called “On Death and Dying” In it, she outlined her theory of the five stages of grief and loss. Most of us have found that we tend to typically move back and forth between stages when trying to deal with grief and loss.
Kathy Kastan reminds us that grieving after a cardiac event is TOTALLY NORMAL: “Grieving is a fluid – not a stagnant – process. You may find that after you have worked through one stage, you can somehow end up there again – another health problem, a milestone, or someone else’s illness can trigger a feeling that you’re moving backwards. You’ve lost something for a time at least: your sense of invincibility, your way of living, and your old self.” Check out her useful book for yourself.
See also: The “Loss of Self” in Chronic Illness is What Really Hurts
‘From The Heart‘ excerpts: ©2007 Kathy Kastan; Kathy’s image: Blūm Wellness; Question mark image: Pete Linforth, Pixabay
♥
NOTE FROM CAROLYN: I wrote more about predictable post-cardiac depression and other psychological after-effects in my book, A Woman’s Guide to Living with Heart Disease. You can ask for it at your local library or favourite bookshop (please support your independent neighbourhood booksellers) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
Heart Sisters 
Hi Carolyn,
Once again there is disease overlap here.
These stages certainly apply to the cancer experience too.
I don’t necessarily view these as stages but rather as categories or even just normal emotional responses or reactions that we weave in and out of. And there isn’t necessarily an end date for any.
Even 12 years post diagnosis, I still find myself experiencing them all from time to time. I prefer to describe the acceptance stage as moving forward. That’s very different than moving on. To me anyway.
You might remember that I wrote about that in “Emerging”. I’m not sure which affected me most during recovery. Depended on the day I guess. Still does.
Thanks for yet another helpful piece. x
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Hi again Nancy – yes, that’s an astute perspective: MOVING FORWARD vs. MOVING ON. I like it!
“Moving ON” somehow seems like you’re done with that stage and are leaving it behind, while “Moving FORWARD” seems more like a fluid situation. And as you say there is no timetable or schedule or calendar that determines how we interpret each “category”. This path is so different for everybody, and there’s no right or wrong way to go. But this list of what may or may not happen next, or what others have experienced, serves to make us feel less alone when each one occurs.
I was thinking the other day about sadness (or what Kathy Kastan described as “I’m not the same person anymore”. This shocking reality made me feel very very sad in the early days and months post-diagnosis. I loved my ‘old’ life and really missed it. I was definitely grieving the loss of my former self – the self I had always been (as I wrote about here on the “loss of self“).
But now, 15 years away from my initial cardiac crisis, I know that I’m not the same person anymore, but I no longer feel sad about that reality. I’m not really sure when or how all that sadness gradually went away (could it be that my GRANDBABIES filled me with so much joy that there wasn’t much room for being sad anymore!?!) 🙂 This doesn’t in any way minimize how awful that long-ago sadness was – but life changed, and I changed with it somehow.
Always something to learn, right? Take care, Nancy – stay safe out there! ♥
(NOTE TO READERS: Nancy’s latest book “Emerging: Stories From the Other Side of a Cancer Diagnosis, Loss and a Pandemic” has just been published.
I love this book! Although Nancy writes about breast cancer and I write about heart disease, we have often compared notes over the years and been astonished that so much of what either one of us writes about living with our own diagnosis seems to be SO TRUE for the other, too. I suspect that’s because “becoming a patient” is so overwhelming when facing any life-altering condition that we all have far more in common than you could imagine – which is why her book is so wonderful. ♥
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As I look back, I’m still angry. I’m especially angry at some of the attitudes of the medical professionals I dealt with after my first heart attack. The doctors were great – compassionate, understanding… but some of the nurses were unbelievably cold and uncaring and presumptuous in their attitudes.
I was newly widowed with two kids under 13 when I had my first heart attack, no family in town, no one at home to provide care, and they wanted to discharge me 8 hours after having a 90% blockage widow maker and a stent put in. They had the nerve to tell me I could go back to work 3 days after this ordeal. (I did, stupid me, and regretted it for years.)
When I went back in a year later for a second stent in the same spot and they pulled the same crap on me, I filed a formal complaint with the patient’s advocate.
Seven years on and I’m still pissed off.
I’ve had multiple other health issues since, but at least I’ve found strength to speak up and fight back. After a recent non-cardiac surgical procedure I fought to get two weeks leave for recovery, because I know my body.
Thing is, I shouldn’t have to fight back, should I?
My mother died at 62 of heart disease. I’m staring at age 60 in a few months and I’m scared that will be my fate, despite the excellent care I’m getting and the support of my new husband.
The fear is with me every morning as I rise, every time I’m breathless, every time I have a twinge of chest pain.
Thanks for your articles Carolyn. . . They’ve helped keep me sane through it all.
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Hello Jacqueline – ARRRRGH! I cringe when I learn about stories like yours.
Hospital discharge practices are very concerning – they seem to be far more about bed control than care (“You have a bed, we need that bed!”)
I remember helping a friend years ago who had been sent home the day after her double mastectomy (!!) – with bloody weeping drainage tubes still attached. I was completely unprepared, and ignorant of any post-op care I should be doing.
Jacqueline, it seems that your toughest task right now will be to protect and support your own emotional health. It takes a lot of precious energy to manage fear and anger for seven years – energy that you deserve to focus on yourself and your own well-being, not on what those nurses did or didn’t say or do years ago (which is something you can never change). And anger is so toxic – like the old saying “drinking poison while expecting the other person to die.”
I’m also worried for you because of the focus on your mother’s death date at age 62 as being somehow a predictor of your own death, leaving you with the impossible prospect of counting down the months to a tragic date that will likely not even happen – given your excellent current care and that supportive new husband of yours. Both of those are gifts you have been given (perhaps in some kind of karmic atonement for what you had to suffer so long ago when you were alone and scared).
I truly hope you will find a kind listening ear to help you move through this anger for the sake of your own happiness (e.g. a counseling professional, a trained peer support person, a pastor, an empathetic friend. etc). Meanwhile, you might find this book as helpful as I did: “The Cow in the Parking Lot: A Zen Approach to Overcoming Anger”) – this book really made a difference to me.
Take care, best of luck to you. . . ♥
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The emotional residue is still with me after 2 years. It’s taken this long to reach a plateau in recovery. The hardest part is not being able to return to our former lifestyle and not enough resources to help people adjust to that.
I was not able to advocate for myself during the height of my crisis and now feel over-sensitive about interpreting any medical input.
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Hello Sandy – thank you for sharing your perspective. It’s important for our medical professionals to know that post-diagnosis suffering is real, and that it can affect every aspect of life. A person who is suffering is far less able to self-advocate in the same way they could when they were strong and healthy.
As California researcher Dr. Kathy Charmaz describes this as “the loss of self in chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally valued new ones. . . More on her important work here.
Sometimes, even a plateau can be a small sign of progress. I hope you have many more good days, and good moments during a bad day.
Take care, stay safe. . . ♥
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Another great article Carolyn, I relate with Lisa H (below) – I too am going to check out the support group you suggested.
I am 14 months in, I had my Heartiversary in January and celebrated it by myself.
I suffered with guilt the most. My son was away at school in his last semester, and he had to come home to take care of his father while I was in the hospital. Then when I came home, we had one snow storm after another, and I did not want my son to travel in the snow.
I hated when I came home that he came to help his dad with me. That did not work in my household. Guilt that I could not take care of my family. I feel good 14 months out, but I deal with sadness and worry because I never asked any questions of any of the doctors. Just get it done so I can get on with life. And my family was just too shocked to ask questions. I now have a book of questions for my cardiologist who I see in April.
I kinda like the man, but I don’t think he is going to give me the answers I need. I remember he told my husband” “You just need to get on with your life, we all are going to die sometime!” Not sure how to take that. And that was our first visit…
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Hello Susan – I believe that what you’re describing about those early days and weeks is very common. It’s not like we’re used to suddenly becoming a heart patient! It’s such an unfamiliar and frightening experience – no wonder you and your family had no questions to ask your doctors. Everything was overwhelming and scary in so many ways.
And Mums are definitely not used to having their big kids turn into the family caregivers (that felt very strange in my home too – although now I look back with gratitude on how both of my kids rushed home to support me – and also a sense that families help each other, that’s what family is all about).
I’m not sure what your cardiologist meant by his remarks to your husband (“We’re all going to die sometime!?!?”) That does not sound like a compassionate or professional comment to come from a doctor. When you see him next month, make sure you organize your questions (in writing ahead of time) so they are clear, and do not leave his office until you have those questions answered. You might want to bring a friend or family member with you just to help recall what was said.
Good luck – take care! ♥
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I am happy now my son was home with me, he keeps me in stitches about the things I said in recovery. You got to love them!!!!!
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Oh, that’s so wonderful!
My son Ben kept me laughing too when he flew home to be with me right after I was discharged from the hospital. While his sister reorganized my entire kitchen during her week here (sorting and tossing out anything that was too salty or otherwise unsuitable for a newly diagnosed heart patient, and then shopping and cooking up beautiful heart-healthy meals for the freezer), her big brother spent most of his week here picking out good movies he thought I’d enjoy. We watched LOTS of movies, went out for (slow) walks, and had fun together! 🙂
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This should be required reading for all people who have experienced a cardiac event. I give your book to each such person (and cardiologist) I meet.
Thank you, Carolyn.
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Thank you so much, Dr. Anne. I wish all women with heart disease had access to a physician living with heart disease just like you. Being a heart patient AND a physician is an invaluable advantage to empathetic and compassionate doctoring!
(Not that I’d wish heart disease on every med student, but it sure would make them better doctors, listeners, helpers and advocates one day).
Take care, stay safe and HEALTHY!
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Thank you for this blog. I’m so happy to read this. I’m 13 months out and had my heartiversary. Sadly not one women’s support group in my area so being able to read this gives me the ok I’m normal in my stages of becoming the new normal life.
I am reading your book and can so relate, so again thank you! I am learning to not look at myself as a broken, put out to pasture work horse and look at myself as a survivor.
For me that is tough, because I had always identified myself as a strong woman who could take on any challenge. This challenge gut-punched me more than anything I had lived through, and I have had a few curves thrown at me health-wise.
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Hello Lisa – Happy Heartiversary! I’m so glad you found my book and this blog – and any other evidence to convince you that you are definitely NOT a ‘broken put out to pasture work horse!” You just need to believe that now! 🙂
I too was one of those hair-on-fire strong women who would say YES to anything, all my life – a trait I inherited from my hair-on-fire strong Mum!
I suspect that women who have always seen themselves as you and I did might have a harder time adjusting to such an abrupt change (post-diagnosis) in our activity and energy level.
If you haven’t already, you might be interested in checking out the WomenHeart Connect online support group (it’s free to join, open 24/7 and has over 64,000 women living with heart disease participating – and many different discussion topic groups. This group was a lifesaver for me.
Please take care, and stay safe. . . ♥
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Thank you. I will check out the group you recommend.
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Thank you for these articles. I’m wondering if you wrote in the past on the use of Statins? I’ve read a few researched-based books on Statin use. I have many questions, and hopefully have not ruined the relationship with my GP, as I asked a few questions.
I had a 4th stent put in, in October and I am taking a statin but don’t really want to take it long term. Still with questions.
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Hello Claudia – yes, I did write about statins for women here.
I am NOT a physician so rarely delve into medical issues like drugs (which I consider to be a matter only between a patient and her doctor based on “shared decision-making” – which is a newish concept that’s endorsed by every medical association out there.
I can refer you however to two credible tools used by doctors and their patients to decide whether statins are appropriate:
1. Mayo Clinic’s Statin Choice Decision Aid
2. The Therapeutic Education Collaboration’s Cardiovascular Disease Risk/Benefit Calculator
There is a known difference between prescribing statins for healthy people with low risk of heart disease (that’s called primary prevention) and those who already do have heart disease.
If your GP is like most doctors, statins would be the go-to treatment for almost all patients in that latter group – whether they have high cholesterol or not. That’s called secondary prevention. Many studies have supported this conclusion.
To my knowledge, there are few if any studies (especially in women, who are notoriously under-represented in cardiac trials) on the longterm safety and efficacy of statins (and many other drugs). This is an important question to ask your doctor, because most heart patients are told they will be taking statins for life.
I sure hope that simply asking questions of your GP about your medications is not going to “ruin” your doctor-patient relationship! If it were, it might be time to consider changing doctors!
Take care, stay safe. . . .♥
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Really helpful article–thanks again.
I certainly experienced fear of dying and sadness at the loss of the old “lace up your boots and get going” self that no longer fits.
I’m happy to report that I rather accidentally found a provider that I can work with after calling to get in to see my cardiologist in mid-March and being told the first available was late July. The scheduler asked if I’d like to see a physician’s assistant and I got in that week.
New to this cardiology clinic, the young woman PA had studied my history and tests, listened carefully, had a sound plan going forward, made some referrals without my having to argue for them, and set a timeline for checking in.
Whew!
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Hi Sara – I love that “lace up your boots and get going” description.
That used to be me, too! The difference between that person and the person I had become seemed so big that I just couldn’t figure out why I was no longer able to just get back to my old self.
Congrats on accidentally finding that PA. What great news!
Take care, stay safe. . . .♥
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Thank you for this.
After two years with still no firm diagnosis on the cause of my MINOCA (Myocardial Infarction with non-obstructive coronary arteries), I seem to be on a very fast merry-go-round, going through these stages over and over with no resolution in sight.
I am hopeful, but it gets more and more difficult as time goes by.
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Hello Dima – a ‘very fast merry-go-round’ is an accurate description of how we can feel without a firm diagnosis. It’s exhausting. Yet as you’ve been observing, unfortunately there isn’t always a “firm diagnosis” that’s readily available. I recall from previous comments that you had been waiting for physio and other referrals (neurosurgeon? rheumatologist?)
I’m sorry you are going through so much.
And I hope you are able to seek help from a counselor, a pastor or a close friend about this.
Take care, stay safe. . . ♥
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