Health – When a story is missing

On the whole, doctors like to fix things. It pleases the patient and makes us feel good about ourselves. But in general practice we learn to live with a considerable degree of uncertainty. Not quite the “impenetrable fog” that the author Victor Hugo referred to, but sometimes close to it.

In any given consultation, we may be dealing with a minor illness or a life-threatening emergency. As first-line practitioners, we encounter illness at an early, undifferentiated stage. Symptoms may be non-specific, significant or trivial, and may point to multiple possible diagnoses. The prognosis may be unpredictable. Sometimes we envy the hospital doctor, highly knowledgeable in one area, working in a facility bristling with high-tech machines and with the patient under constant surveillance. It would be very unusual for a patient in that situation to go 24 hours without a clear diagnosis.

But in my world, some maladies are simply not diagnosable. There is even a term for this – medically unexplained symptoms (MUS). They account for up to 20 percent of presentations in general practice and are associated with great distress, significant disability and high use of medical services.The list is long, including pain, fatigue, dizziness, headaches, sensory disturbances and gastrointestinal issues. 

When a diagnosis cannot be pinned down, even after extensive investigation, patients may find themselves in medical “no man’s land” – still sick, but without an explanation. A recent journal article put it this way: “To be left without a diagnosis is to be left without a story, with no way to make sense of distressing symptoms, or explain the disability to others. No diagnosis means no prognosis, so the patients live in perpetual uncertainty.”

This may engender self-doubt, anger and anxiety. A message may be received that “it’s all in my head.”

There is considerable literature devoted to MUS and a helpful distinction can be made between three types:

Elusive illness. This describes the situation where both the patient and their doctor feel there is something “going on”, but it cannot be pinned down. There is always concern that something serious could be missed. A point may be reached where close monitoring is the only possible strategy, but at least the doctor and patient are on the same side of the problem.

Contested illness. This occurs when a patient is committed to a particular diagnosis, but the doctor does not agree. The patient feels they have to fight to secure their diagnosis and that the medical profession is their opponent.

Chaotic illness. Usually there is such a range of symptoms that both doctor and patient feel overwhelmed and hopeless. None can be clearly pinned down, or if one is resolved, another group appears. Consultation dynamics can be challenging and sometimes counterproductive.

There are strategies for all of these situations, including seeking a genuine second opinion, consulting colleagues and referring to medical research. When this is done collaboratively, with mutual respect and an open mind, outcomes are better for everyone.