Why do so many pain patients say their symptoms were ignored?

Eileen Davidson, a Canadian advocate for patients with pain, describes what is was like for her to struggle with rheumatoid arthritis for much too long before diagnosis:

For years I knew there was something seriously wrong with me but no one would listen to me when I brought it up. I thought it was all in my head. I thought I was crazy. I thought I was being dramatic. So did others. In reality though, I was living with a serious autoimmune disease.

As usual, “no one would listen” is a major feature of the story. It’s shocking how much suffering is caused by healthcare professionals ignoring pain and other subjective symptoms — especially in women. It’s bizarre to me that we’re still struggling with this, that taking people seriously is apparently such a reach for so many healthcare professionals that it’s a major feature of nearly every story of chronic pain/illness.

I think a major factor is the widespread belief that pain can be psychosomatic. The mind is all-too-easy to blame. But hypochondriac pain is either quite rare or doesn’t exist at all. (Lying about symptoms—malingering—is also extremely rare. Ain’t nobody got time for that!)

You know what’s not rare? All the diseases that cause pain and/or malaise for years before diagnosis! (Even rare ones, because rare diseases are collectively common.)

So why even bother to blame the mind? I mean, what the hell? There are no excuses, but there are bad reasons.

Limited resources and prejudice

One major factor in choosing to trivialize a patient is “bad triage.” Healthcare is hard, resources are always stretched thin, and most doctors are juggling a lot of priorities and dilemmas… and so they are often keen on any seemingly legit reason to de-prioritize a patient, or at least to make them someone else’s problem (referring).

Enter systemic racism and sexism! If you’re going to avoid taking some patients seriously, who gets chosen? Why, the “difficult” and “weird” ones, of course! The queers and the freaks and the hysterical ladies! The people with weird subjective symptoms you can’t personally relate to! Even super straight white guys may be selected for convenient dismissal as fey weirdos.

Most of this is unconscious, of course. But not all! And don’t get me wrong: prejudice is an adequate explanation all by itself, not to be underestimated. Plenty of clinicians are more than sexist enough to be dismissive of women even if they only saw one patient daily. But the pick-your-battles pressure is always going to make bigotry more seductive.

But no one is immune, and you see the same behaviour even where prejudice is unlikely to be an active ingredient. Prejudice pours gasoline on the fire, but the fire is the irresistibly convenient scapegoat of psychosomatic symptoms — and it can burn any kind of patient.