Illness anxiety disorder: The all-consuming fear of death | Health | DW | 01.09.2018
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Illness anxiety disorder: The all-consuming fear of death

Cancer? Brain tumor? Or maybe multiple sclerosis? People with illness anxiety disorder, formerly called "hypochondriacs," think they are sick despite good physical health — until the fear becomes an illness of its own.

Lisa Midtun, an illness anxiety disorder patient of the Haraldsplass clinic in Bergen, Norway (DW/D. Hodali)

Lisa Midtun's path to healing has been long, but successful

"I was terrified of dying soon," says Lisa Midtun. The agonizing fear of being terminally ill, of having leukemia, preyed on her mind constantly. She could barely sleep. Her thoughts constantly revolved around her symptoms, her swollen lymph nodes: "It began when my son was one year old," she remembers.

The Norwegian woman was only 20 years old when the hypervigilance of her health began. She kept a constant eye on her body — any perceived change confirmed her worries. Falling seriously ill was no longer a possibility, it was a certainty. She sought confirmation from her family doctor.

The physician examined her from head to toe, sent her blood to the laboratory and certified the young mother's impeccable health. But she doubted this conclusion and her consuming fear of illness persisted.

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A few months, and many doctor's appointments later, her family doctor discovered what Lisa Midtun really suffered from — not leukemia, but illness anxiety disorder, also known as somatic symptom disorder. In the past, the disorder was called hypochondria, the fear of being seriously ill.

Labeling people who experience the disorder as "hypochondriacs" is avoided in medical circles these days because "it stigmatizes people like me," says Midtun. But regardless of the label, she urgently needed psychological help, which she was able to access in her hometown of Bergen. Norway's second-largest city is home to Europe's only specialist clinic for sufferers of illness anxiety disorder.

The impact of past experiences

The small clinic is located on the sixth floor of Haraldsplass Deaconess hospital perched on an idyllic hillside overlooking the city. When the sky is clear, the facility has a picturesque view on one side over the valley in which the city lies; from the other, a view up to the mountains.

Fear dominated Midtun's thoughts and everyday life until she began treatment with psychiatrist Dr. Ingvard Wilhelmsen here in 2003. Wilhelmsen, the founder of the clinic, got to the root of her fear.

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Inherited Stress

"At the beginning of the therapy I ask patients about their most incisive experiences," says Wilhelmsen. Midtun had experienced illness and loss at an early age. Her mother died when she was six years old. "A week after she being diagnosed with cancer, she was dead," she recalls. As the eldest daughter, Midtun helped raise her siblings and half-siblings with her father, a pilot who she describes as a "very masculine man." The first time his daughter saw him cry was when her mother died.

Midtun's fear of illness developed later on with the birth of her first son. At first, she was afraid her newborn might suddenly die. But then her anxiety focused on her own mortality: Sometimes it was headaches, sometimes bruising or fatigue. And her fears continued to grow. "I even bought a medical book," something which today Midtun recognizes as a mistake. Constantly looking up symptoms led her to believe that she was terminally ill. "I wasn't fixated on one disease, but I could always find one that matched my symptoms."

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The consequences of Trauma

A downward spiral

She began to spiral into an obsessive pattern of self-diagnoses: Leukemia, cancer of the lymph nodes, a brain tumor, later multiple sclerosis. "I felt like someone was holding a gun to my head and I was just waiting for them to pull the trigger." While most people experience a happy sense of relief when the doctor gives them the all-clear and finds no physical ailment, for Midtun this relief would only last a few hours: "I thought my doctor was the most incompetent doctor in the world."

Midtun's husband would try to put her at ease as well, but the effectiveness of his efforts was also only short-lasting. The young woman could not be convinced that nothing was wrong with her. "During the day, I could function. I was able to finish my training to become a teacher. But at night I cried because I thought that I would soon die and my son would be without a mother." Six months after her first visits to the doctor, she began cognitive behavioral therapy.

Real or not, symptoms are perceived intensively

Midtun immediately felt comfortable with Dr. Wilhelmsen: "He listened to me and took my fears seriously." People with illness anxiety disorder are often considered to be hysterical and attention seekers, according to Wilhelmsen.

Almost everyone thinks they know a typical "hypochondriac" who panics at the slightest cough and rushes to the conclusion that they are seriously ill. But this stereotype is a diminishing cliche. The psychiatrist emphasizes how great the burden is for those affected and for those around them: "They are genuinely scared to death," he explains.

Some people with the disorder avoid visiting the doctor altogether so as to never receive official confirmation that they are ill, explains Wilhelmsen. This group of sufferers is particularly vulnerable.

People with illness anxiety disorder perceive body symptoms intensively and "pay a lot of attention to them," says Wilhelmsen. This in itself is a vicious circle, "because then adrenaline production increases, which means your heart begins to race and you sweat with fear." For those with these symptoms, the cycle of the anxiety is further triggered.

Ingvard Wilhelmsen of the Haraldsplass Clinic in Bergen, Norway (DW/D. Hodali)

"It is the attitude that must change," says illness anxiety disorder expert Ingvard Wilhelmsen

Patients are often creative people

Yet Midtun, who teaches English and history, has never been afraid of germs or infection: "I never minded working with children at school." The fear only took hold at the thought of serious disease.

There is still no clear answer as to why some people develop this disorder and others do not. "Most patients are very creative people," says Wilhelmsen. For the most part, they are persevering and try to keep things under control. "The worry becomes a form of control over something uncontrollable," explains the doctor.

Need to accept mortality

Since the age of 30, the psychiatrist himself has suffered from the autoimmune disease transverse myelitis, a rare neurological disorder that affects the central nervous system. Today, at 68, the doctor says: "You can't choose whether you're healthy or sick, but you can choose whether or not you believe you're healthy when you actually are. It is the attitude that must change."

"Patients must also accept their mortality," he underlines. Midtun, who recalls how Wilhelmsen told her: "Everyone has a project: Mine was to survive. But nobody lives forever. So my project was doomed to fail from the beginning. I understood that." After recounting to patients his own experience with illness, he says that  "Some [patients] start to laugh: 'Wilhelmsen, that sounds totally sick,' they'll say." But having this kind of conversation provides more than a moment of levity — it serves a therapeutic purpose. His patients quickly realize that many of their thoughts are irrational and that it is impossible to predict the future. "They must dispel this constant doubt which they can only do if they decide not to trust fear any longer."

Midtun praises Wilhelmsen's unique approach, saying that the doctor proved "he was so competent throughout the entire therapy."

Interpreting symptoms differently

The number of people who experience illness anxiety disorder is difficult to measure because many sufferers do not confide in a health professional out of shame.

According to various data, one percent of Norwegians suffer from the disorder. In Germany, one in ten is said to be affected. And the trend is rising. More and more people use the internet to pathologize symptoms of illness they may be experiencing. For many, this heightens their fear of disease — a phenomenon called "cyberchondria."

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Factors that boost life expectancy

Wilhelmsen treats about 100 patients per year in his clinic. Most get by with only five outpatient sessions. "Ten years later, many of them are still stable," he says. For the psychiatrist, it is crucial that Midtun and other patients have changed their attitude towards health and disease by the end of treatment.

Midtun took a sixth session of therapy after the birth of her second son in 2007. "Something came up again," she says. Since then she has learned not to grant so much meaning to her symptoms, and she threw away her medical book.

She also stopped searching the internet for diagnoses of her symptoms: "I have sought a new project in life. I concentrate on living now, on my family and on my friends," she says with a smile. "I accept that there are uncertainties in life."

For a long time, she didn't confide in her father about her anxieties and the therapy. She did not want to burden him, though Wilhelmsen encouraged her to talk openly about it. Today Midtun is 34 years old and has three sons — and through treatment, she says, she has her life back.

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