Not in Your Head

Y

ou’re a doctor. You have fifteen minutes with your patient, who cries as she ticks off a laundry list of vague symptoms. Depression is very common, you think, and it could explain all of those symptoms. Do you diagnose the patient with depression, noting it in her medical record, or do you begin an expensive, time-consuming investigation?

Now, replay the scenario from the patient’s perspective. You’re Elke Martinez, a veterinary technician, and you’ve developed muscle and joint pain, headaches, fatigue, and gastrointestinal problems. You go to your primary care doctor, part of the Kaiser Permanente healthcare system, and he attributes your symptoms to depression and anxiety. You know that’s not right, since you’re already being treated for those issues, and the treatment works. What do you do?

What Martinez did was humor her doctor. She attended Kaiser’s group cognitive behavioral therapy classes. The classes didn’t improve any of her symptoms, but they did consume a lot of her time and energy. Meanwhile, she saw more doctors to try to figure out what was actually wrong, but every Kaiser-affiliated doctor asked her about the psychiatric diagnosis already in her chart. “You can see on their face that they’re already checked out,” she says. These experiences undermined not only her trust in her doctors, but also in herself: “You get told this enough and you start to believe it and doubt yourself.”

Your odds of having an experience similar to Martinez’s are shockingly high. A 2017 meta-analysis published in The Lancet showed that for every 100 patients seen in primary care, 15 of them will receive a misdiagnosis of depression.

The problem takes a particular toll on patients who are chronically ill. A 2014 survey by the Autoimmune Association found that 51 percent of patients with autoimmune disease report that they had been told that “their disease was imagined or they were overly concerned.” And a 2019 survey of 4,835 patients with postural orthostatic tachycardia syndrome found that before getting a correct diagnosis, 77 percent of them had a physician suggest their symptoms were psychological or psychiatric.

In our culture, aspersions against patients with poorly understood chronic illness still run deep. Just a few months ago in OpenMind, we covered longstanding efforts to label as head cases and confabulators individuals with fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), persistent symptoms of Lyme disease, and long covid. You can read it here.

Patients affected by rare disorders (those with fewer than 200,000 sufferers in the United States) also suffer enormously from this type of dismissal. According to the National Organization for Rare Diseases, if you initially receive a false psychiatric diagnosis, it takes you 2.5 to 14 times as long to get diagnosed compared to those who were never misdiagnosed, and between 1.25 and 7 times as long as those who received a false non-psychiatric diagnosis.

Even when a patient is in fact depressed or anxious, that might not be the correct explanation for their physical symptoms. The causation may go in the other direction: The patient might have a physical illness that’s causing their psychological distress. Lyme disease patients, for example, are often misdiagnosed as having depression, bipolar disorder, and more. Yet as a 2021 study pointed out, these patients are often depressed precisely because they are ill. Systemic, whole-body or brain infection can cause impaired sleep, attention, memory, and performance, all of which contribute to depression. Targeting those psychological symptoms without effectively treating the underlying infection will never work.

Psychological diagnoses are often the easiest ones for doctors to make, and the hardest ones for patients to shake. Once a psychological diagnosis is entered into a patient’s medical records, it becomes the starting place for every subsequent doctor who reads it. Patients may not even know the diagnosis is there, since they often don’t see their records (although they have a right to — see Tools for Readers, below).

Martinez realized that the only way she was going to get a proper diagnosis of her physical symptoms was by leaving the Kaiser system, so that she could go to a new set of doctors who couldn’t see the psychiatric misdiagnosis in her chart. Thirteen years after her symptoms started, she finally got an explanation: She has Ehlers-Danlos Syndrome, a disorder of the connective tissue that can cause devastating symptoms throughout the body. By the time she received a proper diagnosis, she was disabled and had to give up the career she loved in veterinary work. And she was luckier than many. On average, with a psychiatric misdiagnosis, it typically takes patients 22 years to get diagnosed with Ehlers-Danlos syndrome.

Incorrect psychiatric diagnoses in medical records can cause long-lasting havoc. When one U.S.-based patient I interviewed, who requested anonymity, was erroneously diagnosed with Munchausen’s syndrome — meaning that she was accused of fabricating her illness — she became unable to get medication for her severe pain for several months, while her therapist worked to persuade the psychologist who diagnosed her to remove it from her chart. In the meantime, she resorted to taking large doses of Ibuprofen, which resulted in a stomach ulcer.

Another patient that I interviewed, also in the U.S., told me that her exhaustion led to a diagnosis of depression while she was a medical resident, even though her low energy was sufficiently explained by her autoimmune disease. When she received her medical license, it came with conditions. Due to her diagnosis of mental illness, she was required to receive a high level of supervision, making it impossible for her to practice.

Yet another patient I spoke with lost the ability to digest food, weighing in at 85 pounds at 5’7”, but the local hospital wouldn’t admit her to the emergency room because her medical records diagnosed her problem as psychiatric. Since she lives in a remote area and is too ill to travel, she hasn’t been able to access medical care at all; last I heard, she had not gotten to the bottom of her digestive woes.

The problem of misdiagnosing physiological illness as psychological is particularly pernicious because it evokes the loaded and sexist aura of the old, discarded term "hysteria." Sigmund Freud claimed, without evidence, that unconscious traumatic memories can be converted into symbolically relevant physical symptoms. In so doing, he gave doctors permission to think of literally any symptom as having a psychological origin, even in the absence of psychological symptoms. This led to the term “conversion disorder,” which has multiplied into endless euphemisms designed to cover over its sexist origins, including somatization disorder, functional disorder, and bodily distress disorder. Specialists sometimes argue over fine distinctions between the terms, but fundamentally, they all imply that looking for physical causes for your symptoms will be fruitless and that you should instead address them psycho-behaviorally.

Even today, doctors routinely use the term “medically unexplained symptom” to imply a psychological origin for a patient’s physiological reports. In UpToDate, a highly respected online guide for evidence-based treatment, a search for “medically unexplained symptoms” reroutes to an entry on somatization in psychiatry. Both the language and the culture of modern medicine systematically nudge some doctors toward the assumption that ambiguous symptoms are psychosomatic; it is a culture we need to change. “As a matter of peculiar pro­fessional fact, there is no term that names diagnostic uncertainty without also naming psychological diagnosis,” bioethicist Diane O’Leary and health psychologist Keith Geraghty state in the Oxford Handbook of Psychotherapy Ethics.

Writing in The American Journal of Bioethics, philosopher Abraham Schwab at Clarkson University notes that psychological diagnoses may be incorrect either because the doctor doesn’t have the knowledge to come to the proper biomedical diagnosis or because the patient has a biological condition that is not yet understood by medical science. “As a result,” he says, “psychogenic diagnoses should carry with them low levels of confidence.”

In practice, though, a psychological diagnosis tends to override other interpretations, making it difficult for doctors to discover a medical explanation for the patient’s symptoms. That’s partly by design: Investigating undiagnosed medical conditions is expensive, and it often doesn’t lead to treatment that relieves the patient's symptoms. The widely used MacLeod’s Clinical Investigation Handbook cautions that “if [patients with medically unexplained symptoms] are not managed effectively, fruitless investigations and harm from unnecessary drugs and procedures may result.” Furthermore, a patient’s very determination to find a medical explanation can be dismissed as “doctor-shopping” and viewed as an indication of somatization.

Patients with erroneous psychological records face enormous obstacles since their doctors are discouraged from seeking out the physiological cause of their suffering and further complaints may be met with further suspicion. But there are ways to push back against these challenges, and the place to start is by accessing medical records — and then pushing to get errors fixed.

Mental health professionals have historically resisted making records available to their patients. Common justifications are that patients suffering delusions will become hostile if told in records that their beliefs aren’t correct, or that clinicians will hold back in their note-taking because they’re worried about the reaction of the patient. But some other professionals have argued for encouraging patients to review records, writing in the Journal of the American Medical Association: “The clinician who actively solicits open and ongoing dialogue, including a patient’s opinion about a note’s accuracy, may enhance both clinical precision and the treatment relationship.”

Since 1996 the Health Insurance Portability and Accountability Act (HIPAA) has given patients a legal right to access their medical records. Starting in October of 2022, the 21^st Century Cures Act made it easier to do so. In particular, the Act requires that healthcare providers provide patients access to all the health information in their electronic medical records without delay and without charge. This rule does not include notes from psychotherapy sessions that are not contained within the regular medical record, but it does include any diagnoses made. If a patient believes anything in that record is wrong — such as an incorrect psychiatric diagnosis — they can request that it be changed. See the “Tools” section below for specific guidance on how to purgi falsehoods from your medical record.

Fully fixing the problem of incorrect psychiatric diagnoses, and the array of challenges that result from them, will take a major shift in mindset in the medical profession. It will require a much more nuanced understanding of the complexities of how our mental and physical states affect one another bidirectionally. It will require an acceptance that psychological treatment is an adjunct for physical treatment, rather than a way of getting rid of responsibility for a problematic patient. And it will require a transformation in our healthcare system so that doctors have the time they need to investigate complex patients.

Such changes are beyond what any individual patient can accomplish. But in the meantime, patients can at least ensure that their medical records aren’t making their quest for accurate diagnosis and effective treatment more difficult.