When survivors feel depressed instead of lucky

~ Carolyn Thomas

www.myheartsisters.org

by Carolyn Thomas  ♥ @HeartSisters

I was recently reminded of the perverse nature of expectations (like expecting to feel happy and grateful after surviving a heart attack or other life-threatening diagnosis) when I read the following by Dr. Peter Kramer, who wrote this for The New York Times: 

“Depression is not universal, even in terrible times.

“Though prone to mood disorder, the great Italian writer Primo Levi was not depressed in his time at Auschwitz. I have treated a handful of patients who survived horrors arising from war or political repression. They came to depression years after enduring extreme privation.

“Typically, such a person will say: ‘I don’t understand it. I went through ____, and in all those months, I never felt this.’  

“This refers to the relentless bleakness of depression, the self as hollow shell.”

In their book The Cancer Survivor’s Companion, Dr. Frances Goodhart and Lucy Atkins explained that, for many patients, distressing symptoms of depression may kick in almost as soon as treatment ends, but they might also hit months or even years later.  Why is this?

“There are many reasons why your mood might plummet after treatment, but the basic summary is simple: you have been through a very tough experience, physically and emotionally, and it takes time to recover.

“You are not mentally ill, you are not ungrateful or a wimp, and you do not automatically require professional help (though you may find this useful). “

In my experience, I felt that, having dodged a bullet by surviving what doctors call the “widow maker” heart attack (after initially being misdiagnosed with acid reflux and sent home from Emergency), I should be feeling lucky. Hadn’t I, after all, just survived what many do not?

So why wasn’t I feeling lucky?

According to Goodhart and Atkins, this unspoken expectation can – and often does – backfire. It can feel overwhelming, and can leave survivors feeling confused, lost and low. There can be guilt and gloom right alongside the gratitude we feel for still being alive.

I wrote about this after my doctor mentioned one day that living with heart disease can feel like a stressful move to a far away country.  (More on this at The New Country Called Heart Disease).

Experiencing any life-threatening diagnosis or chronic illness can bring a long-lasting emotional impact, G&A explain, especially if the illness has caused ongoing medical issues. For example:

  • Your life is put on hold for the weeks or months it may take you to convalesce.
  • Missing out on work, school, hobbies and social events can make you feel miserable.
  • You may feel depressed and anxious because of chronic pain, inactivity, or your sudden dependence on others to look after you.
  • The realization that you are mortal can make you brood about your own death or the death of loved ones.
  • You may experience phobic reactions – for example, you may be afraid of going in or even near the hospital where you were treated.
  • Anything that reminds you of your own diagnosis/treatment may make you feel afraid, depressed or anxious.
  • Lifelong medical problems caused by illness, injury or surgery can negatively impact on you, both physically and emotionally, for years to come.

The type of depression that occurs so frequently after a serious health crisis like a heart attack is known as “situational depression” or “stress response syndrome”. It’s what mental health professionals call an adjustment disorder that can strike within weeks following a traumatic life event as we struggle to make sense of something that makes no sense. The good news is that, unlike clinical depression, it typically tends to run its course over about a six-month period, often eventually fading even without treatment.

Goodhart and Atkins also remind us of a long-lost concept popular in Victorian times called convalescence, defined as the period in which the body recovers from a serious illness, injury or surgery.   See also: Convalescence: the Forgotten Phase of Illness Recovery

This convalescence often took place in a separate convalescent facility before returning home – if you were well-off, it might be in Switzerland or another European spa destination.

Victorians recognized that after a major illness, it takes time to recover and regain one’s strength – both physically and emotionally.

Even in the 20th century, it was not uncommon in North America for pregnant women to spend time in special homes during and after their pregnancies. Today’s convalescent homes are generally reserved for patients with longterm medical needs or those who need longer recovery times following surgery.

But over the years – maybe because of the amazing advances in medical treatments – we’ve somehow lost this valuable notion of convalescence.

Hospitals now pride themselves on having the lowest length of stay rates ever.  For example, The Archives of Internal Medicine has reported that the length of hospital stay for patients like me who had survived an acute myocardial infarction has evolved from prolonged bed rest and rehabilitation of more than six weeks in the 1950s to hospital stays of 3-5 days today – a bit longer if you’ve undergone open heart surgery.

This means a revolving door of incoming patients being admitted who replace those being booted out the door as quickly as possible.

Don’t get me wrong. With today’s concerns about the very real problem of hospital-acquired infections like MRSA or c-difficile, staying even overnight in a hospital bed can seem like a creepy option for most of us.

But in a report called “Snapshot of People’s Engagement in Their Health Care“ published by The Center For Advancing Health, we learned that 91 percent of chronically ill patients did not receive a written plan of care when they were discharged from the hospital.

So length of stay numbers are going down, and we’re being sent home from hospital without a comprehensive care plan. A recipe for disaster. (And healthcare policy wonks wonder why hospital re-admission rates are so dismal?)

The unrealistic expectation these days, warn Goodhart and Atkins, is that you should be raring to go the moment you are discharged  from hospital (or as soon as the time between follow-up medical appointments is lengthened).

Given the reality of modern medicine, however, what can the average patient do? 

Sadly, you may not be able to pack yourself off to a Victorian convalescence clinic in the Swiss Alps, but as Goodhart and Atkins suggest, instead of telling yourself you shouldn’t feel low, allow yourself time to feel this way.

Try to work out how to look after yourself while you ‘convalesce’.  If you experience ongoing and relentless symptoms of depression or anxiety once you return home, please make an appointment to talk to a mental health professional. 

And meanwhile, here are 10 non-drug ways to manage feelings of depression.

See also:

Published by Carolyn Thomas

16 thoughts on “When survivors feel depressed instead of lucky”

  1. I’m so glad I found this! I just had my second valve surgery in 10 years and I have been feeling everything you wrote and researched to a tee.

    I especially have been “feeling” my mortality this time after losing a friend unexpectedly a week after my surgery. It’s unfortunate that there is still a stigma about depression, and even my cardiologist refuses to accept the heart disease-depression connection. He even told me not to take an antidepressant because it will “make [me] fat.” Seriously. I’m 40 and this surgery recovery has been a lot harder than the one I had at 30. So glad to have found your site!

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    1. No wonder you are “feeling” your mortality. Not only are you recuperating from heart surgery, but you are grieving the sudden death of your friend. My condolences to you… Read my post about Sandra Pawula’s interesting essay on sadness vs. depression for a slightly different perspective.

      Antidepressants can be helpful in moderate-severe clinical depression but there’s also lots of evidence that mild depression (or what we call “situational depression” such as what we experience after a significant life event) is naturally self-limiting, and generally improves over time with or without the pharmaceutical assistance of antidepressants (and the choice to take them or not should never have anything to do with “making you fat”. Sheeeesh… This type of depression is indeed common in heart patients and, despite your cardiologist’s uninformed opinion, it can critically impact recovery because depressed heart patients are less likely to follow his advice, take their meds, exercise, eat well, etc. etc. Best of luck to you…

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  2. A fascinating post, this idea of convalescence is so important and often, unfortunately, neglected.

    In cases like cancer with its lengthy treatment, when the patient finally finishes and is sent home to return to normal – well that’s just entirely unrealistic. Healing is required, time is required, and now I think a return to understanding that transition is also required.

    But I do see change in that area for those post-treatment, at least for cancer, in our online community. At least here we can talk and share and find understanding, which is certain to ripple out into the ‘real world’.

    ~Catherine

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    1. Hi Catherine – that concept of ‘transition’ is indeed important, and so overlooked and under-appreciated among many of our health care providers. For some of us, however, that transition isn’t between treatment and ‘return to normal’ – because living with a chronic disease sure doesn’t feel like any kind of ‘normal’ we ever imagined. It can just feel like one long transition…

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  3. Carolyn, this is an excellent post on a very important topic. In my case, my extensive treatments for breast cancer have taken a psychological, not to mention physical, toll on me.

    I’m lucky to have survived, but frankly, I do find myself depressed, partly because so many others I’ve known have died from the disease. Not only do I have survivor’s guilt, but the experience alone has been enough to rattle me quite thoroughly.

    Thanks for writing on this.

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    1. Thanks so much for your perspective here, Beth. You’re describing such a common reaction from those living with life-altering diagnoses like cancer (or heart disease). That’s the unique difference between acute medicine and ours: when I had a ruptured appendix and peritonitis and spent a month very very sick in hospital, once I was discharged, it was OVER. Not a moment’s thought to that appendix (or lack thereof) ever again. Never. That’s acute medicine.

      But those of us living with heart disease know that ours is a chronic and progressive disease – our docs can stent us or bypass us or zap our wonky electrical problems, but nothing they do will “cure” what caused our cardiac condition in the first place, often decades earlier. As we say, before heart attack, every chest pain means indigestion. Afterwards, every pain means another heart attack. No wonder we feel “rattled”.

      Love your blog, by the way. ♡

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  4. Pingback: Journeying Beyond Breast Cancer

  5. My best friend just suffered his second heart attack after 2 years from his first one. We are both angry, because he is fit, works out, does not smoke or drink, works hard for his community as a volunteer and is an expert in his field at his job. Why did this happen?

    He and I both are depressed and upset about it. I know a lady that is in her 90’s and she drinks, smokes, eats what she wants and finds life absolutely amusing and fascinating. She laughs out loud more than 3 times a day. Anything that comes her way that is not up to her standards, she “shows it the hand” and goes on her merry way. Genetics play a big role and sometimes these things are simply out of hands and in God’s.

    But, the more we reject negative and accept positive, the better off we will be.

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    1. I’m so sorry about your friend, Rachel. We know, however, that the #1 risk factor for having a heart attack is already having had one, so he was already living with that big risk.

      Sounds like he’s doing everything he can do to minimize the likelihood of a third cardiac event – good luck to him. As for your 90-year old smoker/drinker, as we used to say when I worked in hospice palliative care, “There is no ‘fair fairy’! “

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  6. I had anti depressants for 6 months after I finished my cancer treatment. Fell in a heap at the end of it all!!

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    1. And no wonder you did! As Goodhart & Atkins’ book correctly says: “You have been through a very tough experience, physically and emotionally, and it takes time to recover.”

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  7. I went through an illness which ended in Kidney Failure. My brother donated his kidney, allowing me a second chance at life. After transplant, I was extremely grateful- I mean how could I not be?

    But, years later, suffering daily symptoms from an autoimmune disease (joint pain, fatigue, fevers, and so on) I struggled with finding that gratitude for a short time. Part of me felt guilty and left me wondering why. It was then that everything hit me. The realization of everything I went through and that these daily symptoms are my “new life”. Once I accepted it, the gratitude started to come back.

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    1. Thanks so much for that valuable perspective, Mandy. Many chronically ill patients tell me they hate the phrase “new normal” – but I suspect you are right. Once you embrace reality, you can move forward (with little downward slides, as required!)

      Love your blog, by the way!

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      1. I agree, I too hated the term “new normal” or “new life”. I mourned my “old life” for so long (12 years) that I missed out on many great things. And yes, accepting reality did provide me to move forward!

        Love your blog as well!

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  8. So, maybe, the occasional depression I have is normal? I get depressed (sad) for no particular reason. This state of mind lasts for one to three days and goes away by itself. If it lasts a week, I’ll see a professional about it and even take medication, seventy-two hours of it isn’t too much to endure.

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    1. I like your strategy, Julia. When it persists, look into it. Otherwise, I believe that life is indeed a natural cycle of ups, then downs, then ups, etc etc. It’s when depression symptoms become unrelenting or “normalized” that we really need intervention. You might enjoy Sandra Pawula’s wise thoughts from “Why Sadness is the Key to True Happiness“ – in this article.

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