by Carolyn Thomas ♥ @HeartSisters
“You must go on. I can’t go on. I’ll go on!” These words are from Irish author Samuel Beckett’s 1953 novel, The Unnamable”. The late Nobel Prize winner was describing a reaction that many patients may find familiar, especially when facing the shock of a new medical diagnosis on top of your existing condition.
I wrote here about how overwhelmed I felt as a heart patient (“I can’t go on!”) with distressing new joint pain, and a diagnosis of osteoarthritis. It was too much! I simply couldn’t bear yet another painful diagnosis piled onto my already debilitating daily symptoms of a coronary microvascular disease diagnosis!
But an amazing thing happened.
First, my family doctor encouraged me (“You must go on!”) – suggesting I sign up for free online classes at our local Arthritis Society (hosted by people who know far more about this diagnosis than I’d ever been interested in learning until now). She also arranged an in-person consultation with an orthopedic surgeon, whose recommendation was NOT for surgery (which I’d been dreading) but first for what’s called an unloader knee brace to help improve my mobility and thus ease my symptoms.
Moving a painful body part may seem instinctively counter-intuitive. Couldn’t I just stretch out here on my red recliner with my pillows and blankies, my painful left knee propped up with ice packs? But what I learned is that “motion is lotion”. The surgeon, for example, urged: “Let’s see if a good brace can get you back to your walking group!” I was fitted for a skookum knee brace by his physiotherapist colleagues who specialize in fitting such stabilizing braces.
And, to my great relief and surprise, I was ultimately able to rejoin my walking group (“I’ll go on!”) The brace helped me do this safely and with far less discomfort as the muscles around my affected knee joint grew stronger. I may require knee surgery at some point, but I’ll cross that bridge later.
Every time a person already living with one or more chronic illnesses learns they have yet another medical diagnosis, it can feel far bigger than simply the new diagnosis itself. Researcher Dr. Kathy Charmaz calls this phenomenon the loss of self that can accompany a life-altering diagnosis – a loss experienced while we’re learning to adapt and adjust, as she describes:
“A fundamental form of suffering is 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.”
How we talk about this loss can have an impact on how we get through it, and how we get through it has likely been impacted long ago during our childhood.
Coping with loss or adversity in the past, and more importantly, how our own families coped when we were growing up can influence how we approach crisis and setbacks now. Behaviour scientists, like Dr. Sonja Lyubomirsky at the University of California Riverside, for example, assure us with these surprising findings:(1)
“Life’s turning points do not have to become major crises after all. In fact, our research has found that life events do not have much of an impact on optimism or happiness.
“And as crazy as this might seem, I recognize one true thing: the older we get (except maybe for extreme old age), the better the chances of being able to handle any given catastrophe, entirely due to all those years of experience in successfully handling all kinds of difficult problems, big and small.”
As one of my wise Heart Sisters blog readers reassured me after I wrote about how distressed I felt about my surprisingly debilitating new joint pain:
“I know you will put your efforts into figuring this out – just like you did with the cardiac issues!
She was right. I’ve been through more than one severe medical crisis before. More importantly, my own background and family narrative reinforced in me the idea that no matter what’s happening right now, we’ve been able to cope with far worse over the years.
Psychologists Drs. Marshall Duke and Robyn Fivush at Emory University summarize three common forms of this family story-telling(1):
- Ascending family narrative (things always got better for us)
- Descending family narrative (things always got worse for us)
- Oscillating family narrative (we’ve been up. We’ve been down. We’ve had terrible, painful times but we got through them. We’ve also enjoyed the best of times, but when they didn’t last, we survived no matter what. This third form of narrative is associated with “increased resilience, better adjustment, and improved chances of good clinical and educational outcomes.”)
Dr. Duke added:
“In our study of family stories at the Emory University Family Narratives Project, we found that family stories seem to be transferred by mothers and grandmothers more often than not, and that the information is typically passed during family dinners, holidays and celebrations.”
We know that hearing stories about our family’s past adversity can affect a child’s interpretation of what painful setbacks, disappointments or family crises mean.
For example, are these viewed as unfair tragedies that happen to others, but should never happen to us? Or are they seen as predictable facets of life that we will somehow find a way to adapt to?
Denial, for example, is a known and predictable response to bad news. We are overwhelmed. We can’t believe what’s happening. And we don’t want this to be happening. Denial of a scary new diagnosis in the earliest days may even be considered self-protective, according to Mayo Clinic experts:
“After a traumatic event has occurred, you might need several days or weeks to fully process what has happened and come to grips with the challenges ahead.
“This type of denial can be a helpful response to stressful information. You initially deny the distressing problem. As your mind absorbs it, however, you can come to approach it more rationally over time.”
It’s apparently when we first hear the diagnosis that patients like me are likely to experience the most disruptive emotional upheaval.
The late Dr. Hans Selye was a Canadian physiologist whose studies on stress have guided the modern era of stress research. He suggested that this stage of disruption follows the first profound shock of uncertainty as we try to get our brains wrapped around what’s just happened to us.(2) His explanation of this second stage:
“Now the person is on high gain, accustomed to the increased flow of adrenaline, consciously appraising what has previously been grasped automatically. For example, at this point the person knows that something bad has happened, although the person may also be thinking: ‘This can’t be happening to me!’ There is loss. There is pain. And then reality sinks in, and eventually, there is a return to some equilibrium in the body, the mind and the community.”
1. S. Lyubomirsky, “The Science of Happiness,” lecture at Pepperdine University, Seaver College, W. David Baird Distinguished Lecture Series, Malibu, California, September 25, 2014.
2. H Selye, “The General Adaptation Syndrome and the Diseases of Adaptation”. The Journal of Clinical Endocrinology & Metabolism, Volume 6, Issue 2, 1 February 1946, Pages 117–230.
Image: Arayro, Pixabay
Q: Have you experienced a new medical diagnosis you did NOT see coming?
♥
NOTE FROM CAROLYN: I wrote about the experience of becoming a patient (sometimes more than once!) in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local library or favourite bookshop, 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 
Hello Carolyn, I was that smoker – enjoyed every minute of it. Miss it everyday. Been 3 yrs since my last cigarette. Two yrs since my triple bypass at age 58.
My sister in-law’s sister just passed away from a heart attack at 64. She had some kind of pain in her chest, but thought if she laid down she would feel better.
Reading the comments here and talking to other heart patients, I wonder when the ball is going to drop for me, when I may have that heart attack that I never had, or something else.
I feel really good, my blood work is finally looking good and I have lost a good amount of weight. My heart doctor is really pleased with how well I am doing. But it’s still there “What if”.
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Hello Susan – that’s so sad about your sister-in-law’s sister. Researchers tell us that women are especially prone to minimizing even severe cardiac symptoms, because they don’t want to make a fuss, or because they might be embarrassed to waste a doctor’s time in case it’s nothing, or because they’re too busy taking care of everybody else.
Instead, I urge women to imagine what they’d do if it were their daughter or Mum or sister experiencing cardiac symptoms. Most of us would be screaming blue murder, demanding immediate medical help for people we love – and we need to do the same when WE are the ones needing that help.
The important difference between surviving or not surviving a heart attack is often how quickly we respond to symptoms that just don’t feel right. Congratulations on what you’ve accomplished so far: quitting smoking, losing weight, having good blood work results and making your heart doctor happy!
Every little thing you are doing to improve your heart health is a good thing! Try not to focus on the “what ifs” – I always say that although statistically I’m probably at higher risk now for another heart attack some day – I could get hit by a bus tomorrow and surprise everybody!
Instead of worrying about when that ball is going to drop, pat yourself on the back and thank your precious little heart for surviving open heart surgery and feeling so much better now! Keep up the great work. . . ❤️
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Great article once again.
I do think of my dad who always said, “I’d rather wear out than rust out.” He also insisted he’d never give up smoking because life wasn’t worth living without this pleasure. He did give up his Camels when he was faced with quitting or possible amputation due to poor circulation. Mom lived to be 98, tenacious and quite an Eeyore so longevity not impacted by depression.
Last year in the face of a second breast cancer diagnosis, I went home, picked out a movie, made popcorn and opened a beer. Shattered a crown leading to a very expensive dental bill and getting rid of my popcorn popper.
The next crummy diagnosis led me to the donut shop for a chocolate filled chocolate frosted chocolate donut. Cursing and crying all the way to the donut shop. Didn’t change the diagnosis.
This year I’m celebrating a steady heart rhythm after ablation surgery and no new crummy diagnosis so far.
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Hi Sara,
Oh dear. I hate it when a donut fails to change a diagnosis, or when an expensive crown replacement makes you trash your popcorn popper! 😉 I mean, really: what else could possibly go wrong on days like that!?!? At least you had that beer to help drown your sorrows. . .
My Mum was a lifelong smoker, too – a ‘secret’ smoker who spent decades trying to hide this habit from my Dad by smoking in the bathroom and then spraying half a can of air freshener to kill the smoke smell – as if he couldn’t tell!
She’d regularly send one of us five kids to the corner store with a list of unnecessary shopping items, like a box of salt, a ballpoint pen – and then (whispered): “Oh yeah… a pack of cigarettes! But don’t tell Dad!!”) Most heavy smokers I know REALLY MISS smoking after they quit. Like your Dad, they find a unique pleasure in the act of smoking (first one in the morning with coffee, chatting outside with their smoking workmates, last one in the back yard on a summer evening). I’ve never smoked but I can completely understand that kind of daily pleasure! I am glad however that your Dad quit before facing amputation!
My own Dad was a militant anti-smoker during an era when virtually all other adults smoked. His friends asked him: “Are you sick??!” because it wasn’t manly NOT to smoke back then. Ironically, he died of lung cancer at 62 – one of a minority of never-smokers to die that young.
Congrats on a year with no new crummy diagnosis!! I sure hope this lasts!! Take care, thanks for your wonderful comment! ❤️
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I had my first heart attack when I was 58. Got 4 stents. Discovered this site then.
Had many electrical problems over the years and an ablation seemed to calm it down. My intolerance of most medicines led me to a Food Is Medicine lifestyle, thinking I was fixing things myself though I am crippled with fibromyalgia, chronic gout and haven’t had a day free of pain .
I am now 72 and just had a 2nd heart attack, diagnosed with heart failure, and am currently loaded up with so many meds, 5 new stents and my head spins.
But I am told heart failure is a lifelong progressive syndrome and I must drink the koolaid -and I am reading 50% of patients with my profile die within 3.5 to 5 years if we don’t take the meds.
I just read there are some meds that have very good results for remission or for reducing re-hospitalization, but it is exhausting trying to make sure my HMO is not cutting corners because these meds are $$$.
My other challenge besides walking thru the pain and side effects is finding heart support groups…to just get reassurance from like minded patients. I live in the San Francisco Bay area and it is surprisingly difficult, though free information from some of the best cardiologists in the world is generous. I am a research junkie – though it is a slow and burdensome journey. Not sure my point here, maybe just unloading.
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Hello Suzie – unload as much as you like here! You have sure been through more than your recommended lifetime quota of serious diagnoses!! No wonder your poor head is spinning. As I was reading your comment, a couple of things struck me:
1. Like you, I’m a research junkie too. If you haven’t yet discovered the Heart Life Foundation online site for patients living with heart failure check it out here. They also have a number of Heart Life Academy free workshops for patients too, plus many helpful resources including an online Facebook support group. COVID basically shut down most/all in-person heart patient support groups everywhere, but online groups seem to have stepped into the fray to help.
2. Speaking of groups, these might also be a good source for asking questions to others who have already been there about managing your HMO coverage.
Good luck to you – please take care! ❤️
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I am really grateful for this article.
I’ve had two stents plus an aortic valve replaced as well as microvascular heart disease. Then I got “a simple skin cancer on my arm” And rather than just healing, the incision and my arm became infected, causing pain and the need for antibiotics. Followed by a case of MRSA, followed by a wicked case of Covid but then to top it all off – I tore my gluteus minimus and medius (tendons in the hip) and was told through this unimaginable pain that there is nothing that they could sew together because the tendons were all shredded.
Maybe physical therapy will help but there’s no assurance. At the same time, my orthopedist told me that I have arthritis in my knee, which is causing my knee pain along with two bone spurs. Talk about a run of awful luck.
I really fall into the category that Carolyn mentioned about just wanting to sit on the couch and binge watch TV and not be concerned or interested in going out or being with friends or family and just came to the reality that the person who I used to be, I am not any longer.
That is a very hard piece of reality to deal with. I used to climb 10 foot ladders and hang wallpaper in my own home, go on the floor to scrub it when it looked dirty, and polish the tile. I can no longer do any of these things and even grocery shopping and climbing a simple group of steps has become part of the things in life that I no longer do. It is as if each time I accept what has happened, another shoe drops and it is very, very depressing.
In reading this blog from Carolyn, at least I do not feel like I’m going crazy. Others experience the same feelings and I am not alone. Thank you for writing about it . I have read your book several times and pick up new pieces of information each time. Good luck to you all.
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Oh Laura! What a roller-coaster series of catastrophic things to happen to one person! It’s heartbreaking that something like a simple wound on your arm that would normally be expected to heal uneventfully could be the start of an avalanche of other awful diagnoses.
What you’re describing is what researcher Dr. Kathy Charmaz has spent her academic career studying: this shocking “loss of self“ that so often accompanies scary diagnoses. It’s almost as if we become a person we don’t even recognize as ourselves! I wrote more on what behaviour scientists call the “I usta syndrome“:
“I usta be a runner…”
“I usta entertain friends and family…”
“I usta garden…”
It seems we need to grieve this loss, just like any other major loss is grieved. “WALLOW WITH GUSTO!” as I once heard somebody advise. Don’t pretend it doesn’t hurt. And then be open to one day looking around to see what you CAN do now. You may not be up on a tall ladder hanging wallpaper anymore – but I’m betting you’ll find something a bit closer to the ground that might capture your creative imagination. Maybe not today, or next week. But some day. Meanwhile, try to be kind and patient with your precious self.
And you are definitely NOT going crazy – even though it may feel like you’re in a crazy-making bubble right now. And you are NOT alone! I often think that if only healthcare professionals would simply warn us before hospital discharge that situational anxiety and depression after an overwhelming diagnosis is common, predictable, treatable and usually temporary, we wouldn’t feel like we’re THE ONLY ONE losing our mind when it does happen.
Hang in there, Laura and take care. . . and good luck to you, too! ❤️
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Very interesting blog. I’ve often thought exactly what you write about.
I was diagnosed with Type 1 diabetes at age 19, and skeletal Non-Hodgkins Lymphoma at age 56. Upon examining what I thought was a broken arm, the ER doc told me it was a bone tumor and I should “go home and and enjoy my last Christmas.” That was 2010.
In 2014, I had a heart attack and stent, and in 2019, was diagnosed with Chronic Heart Failure. In 2022, I fell and broke both arms, followed by a stroke later that fall. Luckily, I was able to summon help from the tree trimmers on our property. I think the reason I’ve been able to move on and appear normal is that my family faced several tragedies when I was a kid: oldest sibling diagnosed with polio in 1953 at age 4, Dad with diverticulitis surgery and then a near fatal heart attack in 1964, followed by our oldest sibling diagnosed with diabetes in 1959 and ultimately, dying from septicemia after a car accident in 1968.
My parents were true stalwarts who had each lost a parent as they came of age during the Great Depression. Nothing stopped them and they have surely passed that on to us kids. I feel fortunate.
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Hello danechick – WOW! Your story and the stories of your immediate family are remarkable. And the fact that you can still say you feel “fortunate” reveals a lot about your perspective on being diagnosed with what I counted as six catastrophic diagnoses (not including those broken arms). Thank goodness for those tree-trimmers!!
You are indeed a true stalwart like your parents. As the researchers mentioned in this post reported, your perspective has likely been heavily impacted by how you observed your family members coping with adversity.
“Go home and enjoy your last Christmas!!?!” Clearly, the doctor who broke the news to you by saying that was quite wrong, since here you are, still! You must have “moving on and appearing ‘normal’ down to a science by now. My own parents were also children of the Depression. I suspect that growing up in that era (1929-41) meant a hard life for many families. But back in 1929 – even before the Depression officially began, life expectancy was only 57 on a good day! Throw in a couple of serious recessions and a World War – (two of my Mum’s younger brothers were killed overseas in WW2) – and yes, life everywhere was hard then. When you grow up in the shadow of relentless hard times and grief, it seems that, just as you describe your parents, it was likely more common to be “true stalwarts”.
Your sibling diagnosed with polio reminded me that the polio vaccine was not yet widely available until the mid-1950s. My friend Kit was diagnosed as a 3-year old back then, just missing the vaccine rollout here in Canada; she was later diagnosed with post-polio syndrome as an adult – which ended her career as a physiotherapist.
Take care – and stay healthy! ❤️
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Thank you. I had quadruple bypass surgery in 1998, followed by 11 stents over the next 8 years. Then I was diagnosed with breast cancer and thankfully was declared a “survivor” 2 years ago.
Two weeks ago, my cardiologist announced I have atrial fibrillation. He said it’s because I am old. I adjusted to my other issues including arthritis and sciatica – but I am having difficulty adjusting to this newest diagnosis. Your article helped me understand that this happens.
I think part of the problem stems from the doctor announcing it’s because you are OLD!”
At 78, I have always said I am not old. . .just very mature. I enjoy spending time with my grandkids, mentoring high school students etc to remain active and young at heart.
But the new diagnosis and his pronouncement that I am old has me a bit depressed. Going to keep this article to remind myself to keep going. Not even sure how Afib affects life. I need to learn more.
But thank you for your timely article.
PS: Ordered your book too.
Pam
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Hello Pam – I love your original opinion – that you’re not old, just very mature! Sometimes, healthcare professionals can casually make flippant comments they may believe are meant to be funny. But when you’re reeling from hearing a new diagnosis you don’t know much about – it’s just not appropriate. Nor is it even particularly accurate!
One of the things you will learn about AFib (your only job now, as I like to advise, is to become the world expert on this new diagnosis! Knowledge is power, so the more you know, the better you can manage!) – is that although most AFib diagnoses happen over the age of 60, more and more young people (even teenagers and 20-somethings!) are diagnosed too!
Your doctor’s unfortunate throw-away comment can also make people feel like the despair floodgates are about to open wide, since every one of us is getting older by the day! It can stop us in our tracks, as we assume: “It’s bad now, and it’s only going to get WORSE tomorrow!” I just celebrated my 74th birthday on Thursday, and like you – there are so many wonderful things that keep me feeling younger than the calendar says I am (like my precious grandbabies!!), my walking groups, my friends and family, my crafting hobbies – and writing these blog posts!
On your way to becoming the world AFib expert, you might like to check out the Stop AFib website. There’s also a patient Forum there where you can ask about (or answer) specific questions or concerns from lots of others with the same diagnosis. Very helpful!
Best of luck to you! ❤️
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A year ago in May, I had surgery for removal of hardware from a fusion due to osteomyelitis in my lumbar spine.
The incision has to heal from the inside out. A small area still not healed after a year. That means a year of antibiotics, cauterizing area and dressing changes at the Wound Clinic in addition to me having to change dressings.
I was somewhat tolerant of living with a recent diagnosis of heart failure, but at times have felt overwhelmed with treatment and living with another chronic health issue. I definitely did not see this coming. This is my story of aging. I journal and take life 1 day at a time.
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Hello Sandy – you have had quite the year of living with your post-surgical back issues. Add to that your heart failure diagnosis – and no wonder you are sometimes feeling overwhelmed. Dr. Victor Montori at Mayo Clinic calls this kind of diagnostic combo “the burden of treatment”.
I like your wise coping choice to journal and “take life one day at a time”.
Take care – I hope your incision healing speeds up soon!❤️
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I was just reflecting on this topic from your book. Treatment adds to stress of illness.
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It does! Treatments are meant to help, of course, but many healthcare professionals don’t quite appreciate this “burden“, especially when patients are being treated by more than one physician, each of who has something to add to that burden list. As Dr. Montori explains so well: “Right now, doctors have no way of assessing a patient’s burden of treatment. There’s no measurement, no way of knowing except through conversation. No real way of becoming aware of how difficult it is for some patients to implement everything that every health care provider has asked them to do.”
❤️
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Thank you for writing this. I will be alive ten years on May 19.
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Ten years is a wonderful milestone to celebrate, Roslyn!
Take care. . .❤️
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Wow! What TIMING!
I recently had a breast biopsy. The day after, while waiting for results I really sank into a depression.
It very much surprised me. I did not want another issue on top of my heart problems, thyroid problems, type 2 diabetes, and the many surgeries I have had over the years.
Enough was enough. I was in a funk for several days. Then I got the great news that it was benign and now I have this spectacular bruise that I cannot show anyone.
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Hi Jennifer – I had to laugh out loud imagining that “spectacular bruise you can’t show anyone!” What’s the use of having a spectacular – but hidden – bruise, right? 🙂 It’s not surprising that waiting and worrying about your biopsy results pushed you into that funk. What a relief!
Great news like your biopsy results can somehow make the sun shine brighter, can’t it?
Take care . . .❤️
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