Is It All In Your Head: True Stories of Imaginary Illness
US: Jan 2017
In Is It All In Your Head? True Stories of Imaginary Illness, neurologist Suzanne O’Sullivan utilizes patient histories to explain psychosomatic illness. Hers is a difficult task. Where writers like Oliver Sacks, Jerome Groopman and Atul Gawande have captured public interest with moving stories of unusual illness and suffering, O’Sullivan is writing about a disorder that tends evoke sneers rather than sympathy. Hers is a game effort.
At 27 years old, Pauline has been ill since age 15. Now unable to walk, she relies on narcotics to control debilitating joint pain. A series of bladder infections has led to insertion of an indwelling catheter. Pauline has seen countless doctors, taken numerous medications, undergone multiple surgeries. She remains undiagnosed. When a swollen leg brings her to the hospital emergency room, O’Sullivan can find nothing amiss. Pauline begins to convulse.
A specialist in seizure disorders, O’Sullivan became interested in psychosomatic illness when her work asked that she:
Investigate people with epilepsy who were not getting better with standard treatment. It transpired that approximately 70 percent of the people referred to me with poorly controlled seizures were not responding to epilepsy treatment because they did not have epilepsy. Their seizures were occurring for purely psychological reasons.
The differences between epileptic and dissociative seizures—that is, seizures without physiological basis—are easily discerned in a medical setting. Epileptic seizures are accompanied by literal brainstorms of electrical activity, unconsciousness, and cardiac arrhythmia. Dissociative seizures, while alarming to witness, cause none of this. The sufferer is in no physical danger.
Telling Pauline her seizures are dissociative rather than indicative of serious physiological illness is a delicate matter. O’Sullivan writes:
It is not necessarily the greatest suffering that receives the greatest consideration and sympathy. Illness is not scored that way. Deadly disease obviously scores higher than others. After that there is an unofficial ranking system for illness in which psychiatric disorders are the out-and-out losers. Psychiatric disorders manifesting as physical disease are at the very bottom of that pile.
Interestingly, it is Pauline’s boyfriend, the overly solicitous Mark, who is outraged by O’Sullivan’s diagnosis. Pauline herself agrees to consult a psychiatrist. As she leaves the clinic, her mother notes she hasn’t had a seizure since O’Sullivan’s diagnosis; the mysterious leg pain has vanished. Whether or not Pauline makes a full recovery is unknown.
A diagnosis of psychosomatic illness often meets disbelief. Shaun is a teacher with dissociative seizure disorder. Even as O’Sullivan repeatedly explains to him why he doesn’t have epilepsy, Shaun remains unconvinced, countering with various physical ailments. “I accept that my old seizures were not due to epilepsy, but I have a new sort of attack. I’m sure it’s epileptic,” he says.
Shaun agrees to visit a psychiatrist, who offers O’Sullivan a bit of information Shaun has withheld: falsely accused of assaulting a student, Shaun was placed on leave during the ensuing investigation. This humiliating experience ended after a fellow student reported the accused, who recanted. Shaun experienced his first dissociative seizure soon afterward.
Camilla, like Shaun, is blind to the cause of her dissociative seizure disorder, which has destroyed her law career. Now Camilla and her husband, Hugh, sit before O’Sullivan. The doctor asks whether Camilla sees any pattern to her seizures. She doesn’t. Had anything touched off the first attack? No. Finally, Hugh speaks up. The doctor learns Camilla and Hugh’s first child died in an accident. Camilla has never once mentioned the child. Why? “The loss was behind her.” Her body had other ideas.
Recovery from psychosomatic illness appear slim. Of the cases described in Is It All In Your Head?, only Matthew, initially certain he has Multiple Sclerosis, makes a full recovery. Matthew acknowledges the psychiatric component of his illness and seeks help. Critically, Matthew realizes he’ll always require support. Another patient, Yvonne, suffers false blindness related to an unhappy marriage. Her eldest daughter demands she get help. When we last hear from Yvonne, her situation is greatly improved.
Unfortunately, other cases discussed in Is It All In Your Head?, aren’t as conclusive. We never learn what becomes of Alice, a cancer patient, for in the midst of discussing her, O’Sullivan veers off to another patient named Mary, who has amnesia. During a discussion of Rachel, who has Chronic Fatigue Syndrome, O’Sullivan brings up Daniel, a hypochondriac. We never learn whether these patients continue as they are or improve. This uncertain note is the book’s greatest weakness. While O’Sullivan can hardly be faulted for patient illness, closure—even of the unhappy variety—is critical in a book addressing such a difficult topic.
It must also be said that Western culture teaches us to suffer in silence. Such stoicism is considered admirable, meriting sympathy in others. Anything less—complaining, admitting to pain, refusing treatment—merits disgust or dismissal. These ingrained attitudes must be confronted head-on while reading Is It All In Your Head?, lest they undermine O’Sullivan’s message. As a reader with an epileptic sibling, I struggled at times. Here were patients whose seizure disorders were curable, yet they refused treatment. It took some thinking for me to realize that refusal was actually inability, and that inability was the illness.
Doctors and lay persons must guard against negatively judging the ill. O’Sullivan describes a patient named Fatima, whose floridly annoying behaviors make her extremely unpleasant to be around. Her complaints of headache and weakness are easily dismissed, especially in light of her medical history: vague pains, heart trouble, fatigue. Fatima demands a scan. On the day of her appointment, she lays across three chairs instead of sitting upright in one. The reader—this one, at least—
longs to smack her. Then the radiologist pulls O’Sullivan into the office and points at the x-ray: Fatima has a brain tumor.
“I have thought of Fatima often since that day. We expect people to complain only in proportion to our idea of their illness,” writes O’Sullivan. O’Sullivan treads carefully when discussing chronic fatigue syndrome (CFS), writing:
It is tempting to be obtuse at this point, to hide my opinion on the matter among the opinions of others. This is a very contentious issue whatever stance one takes… I will not be obtuse. I believe that psychological factors and behavioral issues, if they are not the entire cause at the very least contribute in a significant way to prolonging the disability that occurs in chronic fatigue syndrome.
Rachel was a promising dance student before chronic fatigue syndrome put her in a wheelchair. Rejecting a diagnosis of chronic fatigue syndrome (CFS), Rachel angrily insists she has “myalgic encephalomyelitis”. To that end, she demands a prescription for interferon, which O’Sullivan cannot administer; it is illegal. Rachel departs, having refused any other treatment.
Is ME/CFS “real”? As O’Sullivan points out, there are 250,000 CFS sufferers in the UK alone. Their lives have been destroyed by illness. Dithering over the whys and wherefores of CFS is ridiculous when so many are in need of our help, and our compassion.
O’Sullivan takes care in discussing the demographics impacted by psychosomatic illness, but sufferers are largely female. “I do believe that male dominance in medicine has played its part in molding hysterical illness, but I also realize I am being disingenuous, ” she writes, “Even when one removes the male doctor one is still left with mostly female patients. The reason is very difficult to determine.”
Nevertheless, O’Sullivan cites a few, noting women are more vulnerable to assault and abuse. It’s more socially acceptable for women to express emotion, even inappropriate levels of emotion. Women are less prone to aggressive outbursts and are less likely to self-medicate with alcohol. In other words, “women turn their distress inward and men turn their distress outward.”
If hope is to be found, it lies partly in books like this, which help sufferers by enlightening those around them. Is It All In Your Head? isn’t light or easy reading. There are moments when the writing is unwieldy, the going tough. Yet O’Sullivan is a deeply compassionate physician whose feeling for her patients is admirable. Is It All In Your Head? may challenge some of your most deeply-held beliefs about illness and behavior. Whether you think it’s all in their heads or not, you’ll realize it doesn’t matter.
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