At a recent networking event, I listened as multiple specialists across varying areas in medicine described one specific rare disease population as “angry,” “difficult,” and “off–putting.”
When asked whether they’d be interested in learning more about the condition or furthering their education to better support patients in that space, the response was repeatedly some variation of:
“Why would we? Those patients are unpleasant.”
And honestly? That should concern all of us.
Because if an entire patient population is consistently presenting exhausted, frustrated, distrustful, medically traumatized, or emotionally reactive, maybe the question shouldn’t be:
“What’s wrong with these patients?”
Maybe the question should be:
“What happened to them?”
Rare disease patients often spend years, sometimes decades, fighting to be believed.
Many have been dismissed, misdiagnosed, gaslit, under-treated, or labeled “difficult” simply for advocating for their own survival and quality of life.
Lived experience does not diminish credibility. In many spaces, it creates expertise.
Patients who have navigated these systems firsthand carry invaluable insight into barriers to care, diagnostic delays, provider bias, accessibility gaps, treatment burden, and the emotional realities of surviving within systems that were not built with them in mind.
And if the healthcare community only welcomes patients when they are agreeable, easy, smiling, grateful, and non-disruptive, then we are unintentionally rewarding silence over honesty and transparency.
Patients should not have to coax the ego of others in the room to be deserving of equitable care, curiosity, or compassion.
The most impactful progress in healthcare happens when clinical expertise and lived expertise are treated as equally valuable forms of knowledge, not opposing ones.
If I could leave you with anything, it’s this:
Remember, patients are not “difficult” simply because their suffering makes others uncomfortable.
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