Have you ever had the experience of going to a doctor, feeling unwell, only to be told there seems to be nothing wrong, but “I think you might be depressed”? Were you satisfied with that response? Did you question it? What sort of answers did you get?

Have you ever (as I have) really wanted a different kind of conversation – about the long term effects of trauma on the body, and whether that might be important in partly understanding what’s going on for you physically? How did that work out for you? Not great, was my experience!

In this post, I reflect on the knowledge gap that can arise in medicine when symptoms don’t have a clear explanation. I argue for the gap to be opened up, rather than closed down prematurely with convenient labels (like depression, anxiety, and stress) that can cause harm.

Wastebasket of ‘medically unexplained symptoms’

It’s not unusual, it seems, for patients to be told their medically unexplained symptoms are psychosomatic (or some other variation of ‘in your head’). Particularly when the condition is difficult to diagnose, and particularly when symptoms (some of which might overlap with mental health conditions) are part of a syndrome such as chronic fatigue, irritable bowel, fibromyalgia, chronic pain, or endometriosis.

The symptoms of such conditions can, of course, be toxic to mental health, as Franklin Warsh notes in relation to chronic pain. But, that’s not the same as short-circuiting further investigation by transposing unexplained symptoms into a mental health framework, and then treating them accordingly, potentially with psychotropic drugs.

Filling the knowledge gap can cause harm and women are particularly at risk

Both men and women can be dismissed and misdiagnosed, although the chances of unexplained symptoms being interpreted in mental health terms are higher for women, as Maya Dusenbery documents in Doing Harm. Up to a third of patients in primary care, and up to two-thirds in specialty clinics, she notes, have ‘medically unexplained symptoms.’ About 70 percent of these are women.

When she started asking questions, Dusenbery says: “It seemed like nearly every one who’d had a serious health problem had an experience to share.” There was the friend whose abdominal pain, from an infection, was diagnosed as ‘stress’; the friend experiencing dizziness, wooziness, ringing in her ears, and floaters in her eyes who was referred to a therapist for depression, but was subsequently found to have West Nile virus; the friend who was told her stabbing chest pain, from pericarditis, was likely just anxiety. And on and on.

Nearly 200 women wrote to Dusenbery about their experiences, and she interviewed many of them. She also reviewed the scholarly research.

“Women’s reports of their symptoms are too often disbelieved,” she writes. “For centuries, ‘hysteria’ was a label for pretty much any mysterious symptom in women, and theories that tied it to a ‘wandering womb’ or women’s sensitive nerves flourished.”

“The labels doctors apply, often with surprising confidence, to symptoms they can’t explain have varied over time, from Freud’s diagnosis of hysteria, to Briquet’s syndrome, somatisation, somatoform disorder, and conversion disorder. Perhaps most common in the current medical literature is the term ‘medically unexplained symptoms’ ― a phrase that needn’t necessarily imply a psychogenic origin but, in practice, often does.”

And, the problem self-perpetuates, as doctors rarely get feedback that the patient they sent home with a prescription for antidepressants was eventually correctly diagnosed by another doctor.

Wouldn’t it be simpler, I find myself wondering, to admit not knowing? To acknowledge that medically unexplained symptoms might be just that? Symptoms that need an explanation but lack an immediately obvious one? Rather than muddying the waters, and possibly the internal systems of patients, with inappropriate diagnoses and unhelpful antidepressants and anxiolytics?

“No,” I’m sometimes told when I raise such questions. “You’re ignoring the expectations patients have about ‘answers’ and the pressure practitioners feel to provide them.”

Maybe. But, then, maybe those expectations need challenging. Maybe we need to live more comfortably with the reality that bodies, minds, and their intersection, are complex, and that ‘answers’ are sometimes not the answer. Particularly when such ‘answers’ are poorly based and may give rise to interventions that can cause harm.

Maya Dusenbery’s experience

Dusenbery’s book was inspired by her own experience. She had a bad bout of flu, following which her knuckles, elbows, toes, ankles and knees started to ache. She eventually went to a rheumatologist and was diagnosed with rheumatoid arthritis.

She was relatively lucky, she says, to get a diagnosis within several months. “According to the American Autoimmune Related Diseases Association, patients with autoimmune diseases (75 percent of whom are women) see an average of four doctors over four years before they receive the correct diagnosis, and nearly half report being labelled chronic complainers during their search.”

A substantial proportion of those “chronic complainers” would no doubt have received ‘diagnoses’ of depression, anxiety, or both.

Dusenbery says she’s grateful that her early diagnosis meant her condition is now well-managed. The precariousness of the process, however, made her think about how things could have turned out so much worse. She became curious about other people’s journeys, and the frequency of misdiagnosis, particularly the use of mental health labels to paper over a knowledge gap.

‘Depression’ in palliative care

One of the most startling misdiagnoses I’ve come across occurs in a podcast by Andrew Denton. It concerns a woman in palliative care who is seen by the medical professionals as “having depression”.

Denton is interviewing Shayne, whose mother, Jan, is dying a painful death from an aggressive form of brain cancer. Jan is in hospital under terminal sedation. She’s suffering extended seizures and feels as if she has “a giant thrashing around in her body”.

Andrew Denton: “When you [Shayne] spoke to the medical staff, you said to them clearly, my Mum wants to be knocked out.”

Shayne: “Mm.”

Andrew: “Do you recall, clearly, what they said to you in response, or was it a vague sort of obfuscation?”

Shayne: “No, they actually said ‘I think your Mum might have depression’”.

Andrew: “She was within a couple of weeks of death at this point.”

Shayne: “Yes.”

Andrew: “She had a major brain tumour. Multiple brain tumours. She was clearly in pain and her body was shutting down all over the place and they said she may have depression.”

Shayne: “Yes. Yep.”

Personal experience of being labelled with ‘depression’

I’ve also had relevant experiences (although not in palliative care!) with two specialists, neither being a mental health specialist. In both cases, the ‘assessment’ (“I think you’re depressed”) was off-the-cuff and in response to my reports of weakness, breathlessness, and general un-wellness beyond what they found explainable.

In fact, the symptoms were not ‘unexplained’, although their level may have been puzzling. I have heart disease, lung disease, and was iron deficient. The combination perhaps created effects that were greater than the sum of the parts, or greater than could be ‘explained’ by any one condition through the lens of its particular specialty.

The heart condition is now stabilised with stents and medication, and an iron infusion dealt with the iron issues (at least temporarily). The lung disease is untreatable, but I’m feeling a whole lot better and much stronger. On that basis, like Maya Dusenbery, I’m one of the lucky ones.

I was also lucky enough to know enough to reject the ‘diagnosis’ of depression, and disputed it at the time.

“I thought you might disagree with that,” said one specialist. He knew I was a retired psychologist. His acknowledgment did not, however, stop him from putting his ‘diagnosis’ into a letter back to the general practitioner.

Maybe I could have done a better job of setting the record straight. I don’t know. As Dusenbery notes, “questioning a medical expert is difficult even for those patients who are highly educated and privileged. In the exam room, the doctor always has the power.”

And the patient may not be feeling up to an argument!

Opening up the knowledge gap

Although I wasn’t impressed by the default position of the specialists, I was fortunate that my general practitioner seemed refreshingly able to sit with not fully understanding what was going on for me.

At one stage (while I was still feeling pretty dire, before the iron infusion, and before heart medication had been optimised) I was sufficiently encouraged to push the boundaries of conversation with him.

I was curious to explore any possible connection between some of my cardiac issues (rapid heartbeat, atrial fibrillation, for example), the fact that I have long been prone to an overactive startle response, and my personal history, threaded as it is with car accidents, violence, and other forms of trauma.

Could it be, I wondered, that as I’ve aged my body has, in a sense, lost the plot, behaving as if it’s constantly under threat, even when it’s not? And forgetting the unlearning and relearning I’ve done to manage overreactions to environmental triggers?

“Oh,” was the response from the general practitioner, “do you think what’s happening is psychogenic?”

“No,” I replied.

We were back to locating unexplained symptoms ‘in the head’, and cutting them off from history, whereas I was interested in a different conversation – about the legacy of trauma and the way personal history can, in effect, speak through the body.

The imprint of trauma on physical systems is an important area of scholarship, and people like Bessel van der Kolk, Judith Herman, and Babette Rothschild are among the experts. Knowledge about the effects of trauma does not, however, seem to be well integrated into mainstream medicine, and the trauma model is in tension with the dominant medical diagnostic one.

I didn’t get any sense that my general practitioner understood what I was talking about in terms of competing models, or how differently each might approach ‘unexplained symptoms’.

PTSD (post-traumatic stress disorder) comes about as close as it gets to spanning the two models. It’s pretty much core business within a trauma model, and does have some recognition within mainstream medicine. To establish it, though, requires knowledge of a patient’s personal history, and their exposure to events such as warfare, sexual assault, other forms of personal violence, and traffic collisions. I have never been asked about any of these experiences by a general practitioner or medical specialist.

My question about my heart issues was an attempt to enter the territory of trauma and long term physical effects. It might have reflected my ignorance about physical processes, and I would have been happy to hear that, but the response in terms of psychogenesis was a conversation-stopper.

Unexplained symptoms are contested territory

‘Unexplained symptoms’ are, I’m arguing, contested territory. They might, as in examples provided by Maya Dusenbery, and in my current case, end up being medically diagnosed and effectively treated with medical interventions. They might, alternatively, sometimes be effectively explored within a trauma model. Or, they might, in yet other cases, most effectively be considered and treated within a mental health diagnostic model. The last possibility should not, however, be the default option.

Premature judgments may do harm. It would, I believe, be in the interests of good medicine to open up discussion of ‘unexplained symptoms’ rather than filling the knowledge gap with convenient, but questionable labels.

It was possible, for me, to avoid being passed from the medical system to the mental health system when the medical practitioners encountered a knowledge gap that they attempted to fill by diagnosing depression. Others may not be so well placed, and it shouldn’t come down to the luck of the draw. That would be depressing!

Comments and stories about your own experiences are most welcome…Joan Beckwith.

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NOTE: If you like this post, you might also be interested in other posts in the  categories of Health and Mental health and Gender; Sexuality

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