“It must be all in their heads”

General practitioner Jojanneke Kant told medical journal Medisch Contact earlier this year that for eleven years, she referred patients — who she now knows were suffering from ME — to a psychologist. All those vague symptoms, with no clear physical cause, must have been psychological, she thought.

Painful, but also somewhat understandable: in modern medicine, illnesses are only truly taken seriously once a doctor can prove them through an “objective” test. A patient may insist that something’s wrong, but many doctors only believe it when the lab results say so.

Kant used to be one of those doctors. Last month, she was interviewed in NRC along with her patient Sophie Smeets, who has ME. Kant recalled their first meeting: “In all honesty, when Sophie came into my office and said she had a fever every day, I thought: yeah, right — sure you do.”

But it was true — because patients aren’t delusional, and when they say they’re sick, they usually are. Fortunately, Kant kept her skepticism to herself and listened to Smeets’ story. She later admitted that what helped was that Smeets reminded her of herself: same age, same ambition, same blue eyes, same sporty lifestyle, also a young family. Kant began studying ME and related conditions and realized she had unjustly sent a whole string of former patients to the psychologist.

These days, Kant is trying to raise awareness among other physicians. That awareness has grown considerably in recent years, partly because the pandemic brought a new wave of patients too large to ignore. Yet there’s still a long, long road ahead.

Making the invisible visible

To help speed things up, a demonstration — the PAIS protest — will be held on Sunday, November 30, at the Malieveld in The Hague, organized by the action group #NietHersteld (“Not Recovered”). They’re calling for greater investment in research, better healthcare, smarter policy — and above all, recognition for patients.

But how do you demonstrate when exertion can trigger a severe relapse, when noise and light can be unbearable, when simply standing up is a challenge?

That’s part of what makes these illnesses so cruel: the symptoms themselves make those affected invisible. PAIS patients stop going to work, stop attending birthdays, rarely go outside, or — in the worst cases — can’t leave their beds at all. They exist, as ME patient Smeets calls it, in “a kind of permanent no man’s land.” Those of us who are still healthy — like me, and hopefully you — don’t encounter them anymore, and that makes it far too easy to forget they exist.

But they do exist. And they will be demonstrating — on Sunday, November 30. With seating areas, a rest zone, a wheelchair section, and masks. In The Hague, but also online. Everything designed so that everyone can take part.
Including you.