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.
- Living with the “burden of treatment”
- Study: “91% discharged from hospital without a care plan”
- Convalescence: the forgotten phase of illness recovery
- When are cardiologists going to start talking about depression?
- Top 25 treatments for anxiety
- Where’s the “survivorship” model for heart patients?
- Why hearing the diagnosis can hurt worse than the heart attack
- Is it post-heart attack depression – or just feeling sad?
- The new country called Heart Disease
- When grief morphs into depression: five tips for coping with heart disease
Q: Did you feel lucky after surviving a serious diagnosis?