One of the most challenging issues for a doctor is when someone has a form of Somatic Symptom Disorder (SSD). These patients feel they are being blown off and told they are crazy or they believe they are misdiagnosed.
What I’m talking about is better known as psychosomatic issues or hypochondriasis. Understanding is important because these conditions are far more common than a lot of doctors and patients realize. There is also renewed interest with reclassification of SSD in the latest version of the psychologists’ “Bible,” the DSM-5.
My personal experience trying to persuade patients they have SSD has many times been the kiss of death to a comfortable doctor-patient relationship during my 40 plus years of family practice.
One example worth noting is a woman I saw recently at the free clinic where I volunteer. She has had intermittent chest pain for years.
Chest pains are always assumed to be a harbinger of some life-threating problem from the heart until proved otherwise. So, she got every heart test in the book.
As well as multiple blood tests and EKGs, she underwent a nuclear stress test. She also had a cardiac catheterization, which is the gold standard for checking for blockage in the coronary arteries, as well as a CT scan of her chest and a consultation with a gastroenterologist checking for other causes of chest pain.
Everything was completely normal, which you’d assume would be reassuring. But she still told me “I know I have something wrong. You just haven’t found it yet.”
It was at this point I began to suspect she had SSD.
Somatic Symptom Disorder is a potential diagnosis when a person has symptoms for which no organic cause can be found. Typically, symptoms are from the GI tract, like bloating, colic, diarrhea and constipation. They may also be neurological such as numbness, tingling, and weakness. And often they are sexual, like pain with sex, loss of sexual desire and painful periods.
Commonest of all, however, are reports of pain that can be of almost any kind and can occur anywhere in the body. A lot of people being treated for chronic pain disorders have some degree of SSD.
Developing SSD and accompanying physical symptoms is one way that people react to stress, whereas others may develop something like anxiety or depression. And people with SSD tend to have what psychologists call “catastrophic thinking.” That is, they misinterpret normal sensations from their bodily organs or very minor illnesses, and think it means there is something seriously wrong. They are good at convincing themselves of the worst-case scenario, so any tingling must be multiple sclerosis, any pain must be cancer and any headache surely means a brain tumor.
Not all sufferers have full-blown SSD, however. Some just have an exaggeration of symptoms coming from some physical problem. This reaction is often the case with people being treated for chronic pain. They have some cause for the pain like a pinched nerve, but they have a degree of pain and disability that is out of proportion to the underlying cause.
From the doctor’s point of view, such pain patients are not just suffering from pain, but are a pain, because there is no objective way for someone providing treatment to know how bad the pain is—you must rely on the patient’s subjective scoring, usually on a scale of 1 to 10.
And pain medicines are dangerous, addictive and can be sold for a lot of money, so a lot of patients are trying to get more. This risk must always be a consideration.
The reclassification of SSD in the Diagnostic and Statistical Manual, in its newest version, the DSM-5, published in 2013, has not been without some acrimony and dissent amongst the experts. But now included under SSD are hysteria, conversion disorders, psychosomatic diseases, hypochondriasis and other less known conditions.
Full-blown SSD usually starts in young adulthood and causes years of unhappiness and disability. Patients often go from one doctor to the next for years, during which they get all kinds of tests and are tried on all sorts of treatments—often finishing up in the hands of quacks or complementary and alternative therapists.
This situation may not be so bad, however. Because SSD has such a strong psychological component, if they find a therapist who provides some treatment, even if it is not medically valid, the person will often experience some relief (a sort of placebo effect) if they are convinced the therapy is helping.
An important point is that people with SSD are not faking it or seeking attention. They genuinely believe they are ill and their symptoms are very real to them. Also, it is much more common than people, and doctors, tend to think. A review in the American Family Physician* claims that 50 percent of patients treated by primary care doctors present with “physical symptoms which cannot be explained by a general medical condition.”
Patients are so resistant to being diagnosed with SSD because, with our societal prejudices, these kinds of illnesses have always been considered a slur or a sign of weakness.
As noted, hysteria is a form of SSD. This diagnosis was popular in Victorian times. Nowadays, this term is rarely used; we call it conversion disorder instead. But, like hysteria, it can cause profound and debilitating problems like seizures, paralysis, blindness and an inability to speak.
Hysteria was first diagnosed by Hippocrates, and only in women (hysteria being derived from the Greek word hysterikos meaning “of the womb”). When it was accepted men could get it, sexism changed to nationalism. The Germans claimed they didn’t get it; it was the French who did.
Then in World War I, people were diagnosed with shell shock, which is a form of SSD. But it was often thought of as malingering rather than illness and some of the unsympathetic top brass in the British army thought victims should be shot.
Can’t Be Reassured
So, suggesting to a patient they have some form of SSD can be controversial and requires extreme tact and explanation on the part of the doctor. And such patients, because of their hypochondriac tendencies, tend to be very skeptical.
I have had patients continue seeking answers for years, undergoing test after test, never satisfied they don’t have some rare, undiagnosed disease.
From the doctor’s point of view, SSD should be a “diagnosis of exclusion,” given only after ruling out all other possibilities. But what also makes it challenging is that tests are not infallible, so deciding when to say “enough” when it comes to testing is difficult.
Unnerving is that there have been many famous cases of people thought to have a psychosomatic disease that turned out to be something “real.” And experts warn that someone in the early stages of multiple sclerosis, Lyme disease, lupus or fibromyalgia may present with symptoms that appear to be SSD.
Also, a diagnosis of exclusion does not sit well with most patients. People want to be given a definite diagnosis. The woman with the chest pain told me “I’d rather be told I have something bad than not know what is wrong.” People fear the unknown.
It can tempt the doctor to take a very emphatic line and tell the patient “you definitely have such-and-such” when he or she really doesn’t know for sure.
Because it is primarily a psychological disorder, treating SSD generally involves psychotherapy and sometimes antidepressant or antianxiety medicines from a doctor or a psychiatrist. But if the patient doesn’t accept he or she has a degree of SSD, it’s very hard to make the case for these kinds of treatments.
Often, as a primary care doctor, you perform a kind of informal psychotherapy during which you reassure the patient they don’t have some awful disease. This approach is referred to by the wags in the profession as “a dose of the doctor.”
But many patients spend years doing the rounds, from one doctor to the next, moving on because the doctor won’t go along with their demands to have more tests or to be referred to more specialists.
They never accept that they have SSD or some kind of psychological issue that is causing or aggravating their symptoms. And even after years and many tests, they still think all the doctors are just too lame to figure out the correct diagnosis.
It’s a very thorny issue.
* Am Fam Physician. 2007 Nov 1;76(9):1333-1338
Patrick Neustatter, MD, is a British-born, board-certified family physician who currently lives and practices in Virginia. He’s the author of “Managing Your Doctor: The Smart Patient’s Guide to Getting Effective, Affordable Healthcare,” a book aimed at providing the information people need to take charge of their own health. After retiring from full-time practice in 2010, Dr. Neustatter became the volunteer medical director of the Lloyd Free Moss Clinic in Fredericksburg, Va. When not seeing patients, he writes a monthly health column for two local newspapers.