“After The Diagnosis”: two books, same title, one hope

by Carolyn Thomas    ♥  @HeartSisters

A never-married Catholic priest offers marriage counselling to couples. A childless shrink spouts advice on how to raise toddlers. Oprah Winfrey talks about money problems. “You have no clue!” – I want to scream at them. As a heart attack survivor, I now tend to gravitate towards those who are able to practice what they preach based on actual personal experience – not what they have learned at arm’s length. Clinical psychologist Dr. Elvira Aletta, for example, has been diagnosed with not one but two chronic diseases. Dr. Stephen Parker is a cardiac psychologist who is also a heart attack survivor.

And recently, I’ve come across two authors of books on coping with chronic illness that, ironically, share the same main title, After The Diagnosis:

• Kidney specialist and Harvard prof Dr. Julian Seifter was diagnosed with Type 1 diabetes when he was a young medical intern.
• Dr. JoAnn Le Maistre received her PhD in clinical psychology, delivered a baby daughter, and learned she had multiple sclerosis  – all within a few months.

What these authors have to share with heart attack survivors and others diagnosed with a chronic illness is quite profound. Here’s why:

Dr. Julian Seifter, in his book, After The Diagnosis: Transcending Chronic Illness, co-authored with his wife Dr. Betsy Seifter, explains that when he was first diagnosed, he suddenly had to learn to accept his new self as a person with a lifelong chronic illness, often at odds with his own perception as a hard-charging achiever.  Speaking as both patient and physician, he acknowledges the difficulty of such a life-changing transformation:

“It’s hard to live in a body that doesn’t work right, and to still hold on to hope when the future’s uncertain.”

More than most physicians, he understands the difficulty of managing a chronic condition in our health-obsessed, take-life-by-the-horns, live-forever world. When he first found out he had diabetes, he thought he could run away from his diagnosis. Good health was part of his self-image, and acknowledging that he needed treatment seemed like a kind of failure. His book now offers strategies in managing chronic challenges on a day-to-day basis. His maxims seem deceptively simple:

• “Be Yourself” – emphasizes that the disease does not define the Self.
• “Know Yourself” – addresses the balance needed between denial and preoccupation.
• “Transcend Yourself” – stresses the spiritual dimension of a chronic illness diagnosis.
• “Forget Yourself” – means to uncouple from obsession.
• “Forgive Yourself” – by letting go of guilt and holy hindsight.
• “Grow” – via positive change.
• “Share” – by allowing dependency on others.

Dr. JoAnn Le Maistre in her book, After The Diagnosis: From Crisis To Personal Renewal For Patients With Chronic Illness, explains that the experience of serious illness has traditionally been approached in two ways:

• 1.  a gloomy perspective of resignation, self-denial, and helplessness
• 2.  a Pollyanna approach that denies altogether that there has been a real trauma

But she insists that both of these perspectives can distort and disguise the reality of chronic illness.

The first perspective of resignation views the chronically ill person as a failure. This is the patient who does not respond to the “miracle” of modern medicine, and somehow the lack of recovery is often perceived as the patient’s fault. This attitude of blame, she believes, accounts for some of the worst psychological abuses of patients by health practitioners and caretakers, an attitude typified by the too-frequently implied:

“Stop complaining. You simply must adjust.”

Or, in the words of my own physician:

“You know, things could be MUCH worse!”

The second Pollyanna perspecitve is typified by – and fueled by – personal stories or testimonials of complete recovery from extreme illness or disabling conditions. These stories tug at the heartstrings and catch the fancy of all who read them. But besides creating false hope by overplaying the likelihood of complete recovery, these stories consistently underplay the sadness and feelings of worthlessness that are part of the legacy of any physical or emotional trauma. Dr. LeMaistre explains:

“The resignation viewpoint holds little hope; the Pollyanna viewpoint holds little reality.”

In the face of chronic illness diagnosis, to experience fear, anger, depression, and anxiety is normal, she says.

“It would be abnormal to deny that your health and your life had changed for the worse. Serious emotional difficulties are more often the lot of people who do not acknowledge the emotional stress they feel, and thereby bottle up depression or anxiety until these feelings are so powerful they break through their defenses. By the time an emotion becomes this powerful, it is much more difficult to survive its impact without severe scarring.”

But is there anything that can help overcome the displacement and depression caused by chronic illness and its subsequent impact on our goals and dreams?

Yes, indeed, say both authors.

Dr. Julian Seifter writes:

“Optimism and emotional resilience—both of which can be cultivated and nourished by your doctor—may contribute to what medicine calls ‘luck’. In short: you are not your disease. You are you. Paradoxically, rather than destroy your identity, the experience of sickness can deepen your sense of who you are and what you can become.”

And Dr. JoAnn Le Maistre writes:

“Goal-oriented striving, any experience of mastery, any outside acknowledgment of competence, a well-tuned sense of humor, any experience of joy, and the constant striving toward an inner state of tranquility are the aids that help overcome the displacement and depression of chronic physical illness.”

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NOTE FROM CAROLYN: I wrote much more about what can happen to women after a serious diagnosis in my book “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press, 2017). You can ask for this book at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (use their code HTWN to save 30% off the list price when you order).